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Posted in Finally, 100% relief from cluster headaches.... and now liver disease. on 28 Feb, 2017 - 9:04 pm

Hi Colin

I can't really comment on the Medical ~v~ Welders O2 with the exception of stating that my gas supplier charges the same amount for both and my prescription clearly states:
Medical Grade 02

Further, I am a chronic sufferer of cluster headaches meaning I do not ever get a period of remission. Therefore, and bearing in mind I'm on a Disability Pension, I have found much more success with a continual flow of 02 at 2-3LPM using Nasal cannulas rather than PRN doses of 12/15+ LPM using a non-rebreather mask.

Note: My case is extraordinary unique from most other ch sufferers and I sincerely doubt this method will work for most.

I am only here to state that after over a decade of suffering and over 7 years as a member on this forum, for the first time I have a green light next to my username.

Posted in Neurologist in Newcastle or Sydney?? on 18 Feb, 2017 - 2:46 pm

Also, Associate Professor Alessandro Zagami is one of Australia's leading headache specialists and consults at Randwick and Kogarah. He is particularly interested in cluster headaches but unfortunately has a very unique bedside manner.

Posted in Finally, 100% relief from cluster headaches.... and now liver disease. on 17 Feb, 2017 - 7:42 pm

Note: This post contains the subject of suicide.

To all members of clusterheadaches.com.au

As many old timers would know, I am a chronic sufferer of cluster headaches diagnosed 13 years ago and treated without success by one of Australia's leading headache specialists, Associate Professor Alessandro Zagami. I was fortunate enough to spend three weeks in Prince of Wales Hospital under his care where I was treated with IV lidnocane in addition to receiving a greater ocipital nerve block - I was discharged in exactly the same pain as I was admitted (no success) with the exception of O.T.C Neurofen (Ibuprofen) Zavance (Fast-Acting) and Xanax (Alprazolam).

I applied and was granted the Disability Support Pension in 2014 and I have been living with chronic daily cluster headaches, with Methadone providing the knock-out type anaesthesia that was finally prescribed after years of Pain Management courses and over 2 years in a psychiatric hospital under the care of a Psychiatrist as "surely a young fit male couldn't possibly experience that amount of pain each day".

In 2014 I gave up on the medical profession - it had been over a decade and I had tried and experimented with over 70 prescription medications. The only medication which provided relief were opiate painkillers much to the disapproval of this forum.

I decided to commit suicide in February. I said goodbye to my mother and had booked a ticket to a country where obtaining the drugs I needed to die were freely available. Fortunately, my Visa card expired in February and as I headed to the airport I realised I would have no access to cash without my new card. I called Qantas and delayed the trip for one week.

During the weeks leading up to my departure date I began experiencing vomiting, nausea, pains in my abdomen and other symptoms that required a trip to a GP that I had not seen before. I thought I had gastroenteritis and had a full blood count.

Now during this appointment I explained for the 100,000,000 time my cluster headaches. I explained that I had tried O2 therapy without success in the past and had completely written it off. For some reason, I asked my Dr. for a referral for home medical oxygen as another symptom I was experiencing was shortness of breath.

To cut a long story short:

I made the effort to go to BOC and obtain the necessary forms for a D Size O2 Tank. I had them signed by my Dr and picked up the regulator and cylinder.

My sole purpose in obtaining O2 was for my constant shortness of breath which was becoming a big problem. I decided to use 2 LPM during the night and 3 LPM during the day when required.

Since I obtained my O2, my cluster headaches have completely disappeared. I am talking no pain at all - the headaches which have plagued my life for over a decade just numbed out when I put on that medical oxygen. For the first time in my life I saw some hope - things which I believed were impossible suddenly became possible - this was truly a miracle.

I know that generally speaking, CH sufferers require high flow oxygen of between 12 - 15 LPM using a non-re-breathable mask.

I use my O2 at 2LPM for 8 hours a night and I have never slept so well. I do not wake up with headaches.

I use my O2 at 3LPM as soon as I feel the beginning of any type of head pain during the day - within 2 minutes the pain is gone. I continue therapy for 30 minutes.

I use a standard nasal (two-pronged) mask - it works.

I cannot believe that after all I have been through - the standard first line therapy works at a level far less than what is normally required.

My reason for posting this message is because I believe O2 therapy works 100% for cluster headaches, if it doesn't - try another mask, another flow rate - whatever it takes.

In relation to obtaining medical oxygen - it is as simple as getting a referral stating:

- You need home medical oxygen.
- You need between 2 - 15 LPM.
- You need it on a PRN basis.

BOC Gas will then send a form which contains exactly the same questions before they will open an account. It helps greatly if you book 2 appointments - the first to explain to your GP that you require the oxygen and for the initial referral and the second to have the BOC form signed prior to them opening an account.

I swore O2 didn't work and wasted my entire teenage years and most of my twenties sitting at home or in hospital in absolute agony. This was unnecessary - I simply needed O2 and the ability to find the appropriate flow rate and mask.

Unfortunately, I found out today that I have liver disease. I believe this was heavily contributed to because of the amount of Paracetamol I used to take in an attempt to self-medicate.

I don't know how much longer I have - I hope I can live a normal life, but I wanted to write this post for those who have given up. Even if you have tried O2 - try it again. Use a different mask, a different flow rate and for goodness sakes do not be afraid to use the bloody thing for as long as you need too (within your Dr's specifications). For the very first time since joining this forum, I can click on "no longer suffering".

**** Do you thoughts regarding self harm or suicide? Call lifeline on 13 11 14 ***

Your Friend

Alex

Posted in What to do when all else fails... on 23 May, 2015 - 12:29 pm

Thank you very much for your kind words everyone. I've been a member of this support group now for over 5 years (cluster headache sufferer for 12 years). When I first logged on I was looking (like all of us) for the miracle cure - I've learned over time that there will likely never be a cure and therefore our energy is best spent learning how best to manage and deal with this terrible condition.

Posted in What to do when all else fails... on 21 May, 2015 - 11:21 pm

Thank you for your reply and I'm glad to hear that you can sort of think along the lines of what I was saying.

When I was younger and had a more vivid imagination I would pretend that a cluster headache was when a Martian from Space visited and "connected" to my brain, inputting valuable information that would increase my intelligence. I had to endure the pain in order to benefit from the intelligence that only a visitor from outer-space could provide. I don't think I ever told my psychiatrist that story... icon

There are many different ways of thinking, many different treatments or techniques to help deal with the pain. They all however share a common objective: Making yourself as comfortable as possible whilst you endure the passing of time.

I realised a few years ago that to fight the pain only used up valuable energy, I was much better off submitting and letting the beast do its best at attacking me. The only thing I bother doing is laying down and trying to keep still whilst controlling my breathing, the only thought in my mind is "this too shall pass".

Posted in What to do when all else fails... on 20 Feb, 2015 - 12:03 pm

You are in the middle of doing something important: in a meeting, working on a project, in class, at a funeral, at a wedding, giving a presentation, relaxing with your partner on the only day you both have off and it happens. You feel the niggling sensation of movement on either your left or right temple and you just know that in 5 minutes everything will be hell.

You turn on the oxygen, you scull an energy drink, you pop some pills doing absolutely everything you can think of to abort the impending swimming pool of hot acid that you can almost see coming towards your eye. Your worst fears come to fruition, none of the "abortive medications" have worked and the cluster headache starts. You seclude yourself, you hide, you check the time and start the stopwatch, you turn off your phone.

What happens next for the vast majority of cluster headache suffers is indeed the worst part of their lives. The pain is unimaginable, worse than anything you have ever experienced before... in fact prior to your first cluster you didn't actually think pain existed in this form before. You try and describe it in words but words never quite do it justice, terms like brain-freeze, hot eye poker, knife stabs, hot acid in your veins are used in a futile attempt to explain to non clusterheads what the pain feels like. You can tell they don't understand even if they do their best to try. Until you have had a cluster headache, you cannot possibly understand the pain (if you can even call it pain).

For over 10 years now I have been experiencing attacks on a near daily basis. I have spent months and months on over 5 different occasions as an in-patient in hospital under the care of one of Australia's leading neurologists. I have tried so many different medications, medications for blood pressure, depression, neurological pain, steroids, anaesthetics, painkillers - over 50 different drugs are on my failed list. Nothing works except for Imigran Injections and on a disability support pension I simply cannot afford them unless I really, really cannot afford to have a headache (like my wedding day). I am also on a medication hated by nearly everyone who hears it due to the close association it has with heroin addiction, it doesn't stop the pain - it does make it manageable. That is my purpose in writing this article. How to manage headaches when everything has failed and the hot acid has burnt through all of your medication, used up all your oxygen and is now heading towards your eye and temple.

I have watched YouTube videos of clusterheads in the middle of attacks and it isn't pretty. I am surprised watching one where the man suffering is actually yelling and speaking words. I understand everybody deals with pain differently, but the pain experienced when I have a cluster doesn't let me yell or talk. I go quiet.

Someone on this website (you know who you are) told me that he stopped "suffering" from cluster headaches decades ago and when I first read that my only thought was that he obviously doesn't get them. He was telling me how he has trained himself to not feel the pain and to become in control of it. I thought he was a lunatic. I looked up mindfulness meditation and read a little bit about it, I paid $12 for an iTunes album called "Mindfulness for the Workday" and began taking some time out during the day where I listened to one of the 12 minute tracks.

Meditation isn't hard, in fact you probably do it already without realising it. Have you ever been stressed or anxious and taken deep breaths? That's meditation. That's really the extent of mindfulness mediation - it isn't hard or complicated, in fact it is the easiest thing I have learned to do.

The secret to mastering anything is practice and repetition, having chronic cluster headaches gave me 3x 1.5 hour periods during which I could practice mindfulness meditation every day. I have done this now for over a year and the results have been incredibly rewarding. I can now say that I do not "suffer" from cluster headaches, this is something which I never thought I'd be able to say. I still experience them every day, I still go out of my way to avoid them, I still would do anything I could not to have them, but I do not suffer like I used to.

I used to be so angry during a cluster headache. I was angry that these doctors of which I'd paid thousands and thousands of dollars to and which I had spent months of my life being treated under had not done anything to help me. I was so frustrated that medication which helped others didn't do a damned bit of difference to me. I tried 02, I got the biggest cylinders and the special mask so it was "high flow" at 15lpm. Nothing worked and that made me so angry. I set up a google news alert for cluster headaches so that I was the first to know about any new medications that came along. I did this for years. I was so proactive about my pain, registering and posting on websites like this.

My cluster headaches reminded me of failure, they reminded me of relationship breakups, they reminded me of loosing jobs, they reminded me of not doing well in school, they reminded me of whinging and complaining, they reminded me of doctors waiting rooms, hospital and chemists.

When I got a headache I was angry and the burst of adrenalin made me want to throw things, punch people and hurt myself. I never did, but it took every bit of self control I had.

I started meditating at night time before I went to sleep. I started meditating when I did NOT have a cluster headache. I practiced until I could do it without relying on a CD to guide me through the process, it took me about two weeks to get to this point. Then I began meditating during cluster headaches.

When the cluster starts, I still do everything I can to avoid it, but I don't fear it like I used to. I simply accept that there is a good chance I am going to have a full length cluster headache. I tell my partner and I go into the bedroom where I have a misting fan set up and a stopwatch. I used to have ice packs but they really became more of an annoyance than a comfort. I sit on the edge of my bed and try to get in a comfortable position. I start the stop watch and I begin listening to my body. I feel the pain sensations coming into my eye, I feel the burning pain going back through my temple. I begin to focus on this pain and I freely let my body experience it. I do not in anyway try to fight it. I do not tense up or rock backwards and forwards like I used to. I do not take shallow breaths or breathe quickly like I used to, I take meaningful, slow, deep breaths. I focus on three things only, my breathing, the pain sensation and the time on the stopwatch. I "observe" the pain as if I was an outsider, I let the pain do what it wants to do, I let it go where it wants to go. I accept it. I understand that there is nothing that I can do to stop it. I close my eyes and I touch with my hand where the pain is. I apply a little pressure on the area where the pain hurts and focus my attention there and on my breathing. When I look at my stopwatch I know that the only thing that will end this pain is time and I have no control over the time.

My cluster headaches used to make me suffer, I would try everything I could to fight the pain, to make it go away. I would hit my head hard and tense up. Now I relax and experience the pain.

My cluster headaches have taught me about myself. They have taught me to really cherish and value the time I have without pain and to make the most of every second. They have taught me that I cannot control what happens to me, my control only extends to how I react and handle situations - my response. My cluster headaches provide me with time throughout the day where all I do is listen to my body.

I am amazed by the pain of my cluster headaches. When I meditate and look in from the outside I am often surprised and find myself in a sense of genuine wonder at how strong this feeling of pain is but I am not overcome by it. I remain in control of it and I can manage it, even though I am motionless and not able to physically move I am mentally in control of my pain and the sensation that goes along with it.

I am not surprised by anybody who reads this and thinks to themselves that what I am saying is stupid, ridiculous, unobtainable or even insulting. That is exactly how I felt when I first read about it and thought about it.

The truth is for a large portion of those who suffer from cluster headaches no therapy or medication is going to work 100% of the time. I am someone who tried in vein to find something, I didn't care what it was, I just wanted some drug that would take away my pain and enable me to live a normal life. I spent literally 10 years attending doctor after doctor, trialling drug after drug and researching triggers and the cause of my condition. I reached the end of the road and unfortunately I know that I am not the only one who will discover that treatments which normally work do not.

For me, the only thing I had control over was how I personally dealt with the pain. I couldn't control whether I experienced it or not and trying to do that led to frustration and anger. Accepting the pain does not mean defeat, it does not mean that I have given up on looking for new treatments or new therapies, it does mean however that I do not go into these new therapies with the expectation or hope that they will work and that I will be pain free.

I am a chronic sufferer, when I am out of a cluster period I still get multiple cluster headaches a week. As a result of this I have changed every part of my lifestyle and made it "cluster headache friendly". Things like my job, the layout of my room, my partner, the foods I eat, the exercises that I do or do not do... I have built my life around my condition and as a result I am a lot more comfortable. I used to be a neat freak and could not relax unless everything in my house was clean and in its place, this used to cause me a lot of stress and the constant moving around of keeping everything clean and tidy aggravated my headaches. I now live a very minimalist life and I guess I have just learnt to be kind to myself and my body.

My headaches still hurt as bad as they used to hurt a year ago. The pain has not changed, nor the frequency with which I get my headaches. What has changed is my attitude, I accept the pain and I accept that whilst I am having a headache nothing is going to get "done". I give myself permission to remove myself from life for the duration of my headache and have no expectations of myself other than to make it through until the other end. I relax, I breathe and I focus on the pain. I focus on it coming in and I focus on it going out.

Posted in Triggers and treatments on 20 Feb, 2015 - 10:20 am

Hi Jay

I've really been struggling in this hot weather. I find the worst thing ever is at the end of a stinking hot day when I see rain clouds and there is a thunderstorm - instant cluster headache for me when that happens and bad shadow headaches.

I have never touched illegal drugs ever in my life because I would never do anything illegal. But my cat has cluster headaches and tried Cannabis for them once. He never tried it again because like in your situation it made the pain go from "I didn't know pain could get this bad" to "I wish I felt like I did before when I said that I didn't know pain could get this bad". It is also a serious trigger for my cat, when he is pain free and he smokes he will get a cluster headache just like with alcohol.

Opiates do help for me but I am in the absolute minority and the dose I have to take in order for it to work is simply ridiculous, the side effects are almost as bad as the cluster headache itself and it took me years and years of begging doctors before they finally agreed to treat me with them. I only recommend it if nothing else works after trialling absolutely everything. Even then I don't think I'd recommend it.

Now, some things for you to try that may work well:

At the beginning of a cluster (as soon as you can feel any sort of pain or movement) drink a big can of Red Bull or Mother as quickly as you can. Take 2x Neurofen Zavance, this is a quick release version of ibuprofen and available over the counter or even at Woolworths / Coles. Read the back of the box, speak to your doctor and chemist before using so that you have someone else to sue apart from me if you have a bad reaction.

Seriously though, I've tried nearly everything there is to try and nothing has ever worked except for:
- Energy Drinks
- Neurofen Zavance
- Binaural Beats http://www.youtube.com/watch?v=s4JafbX3WQg
- My prescribed opiate painkiller which I am too scared to speak about on a public forum because everyone will immediately tell me that it doesn't work for cluster headaches and that I am a drug addict.

The energy drinks and neurofen zavance will only work if taken at the earliest time possible, during that 5 minute window between feeling normal and having a cluster headache. That period of time where you think to yourself, oh god, hear it goes again. That period of time when you look at your significant other and you don't even have to tell them, they know by the look of impending doom on your face.

If all of that fails (and it does, often) then I enter this mental state which I actually think I am going to write about in a new post because I think it might help everyone.

Posted in New to cluster headaches on 20 Feb, 2015 - 10:01 am

You do not have cluster headaches. Cluster headaches are short in duration, rarely if ever lasting over 2 1/2 hours. Mine last about 90 minutes each headache, I have about 3 headaches a day.

Jay is correct, this is very likely another migraine that you are suffering from. You are in luck, there are many effective treatments for migraines available so definitely find a good doctor and get treated!

Posted in Binaural Beats on 20 Feb, 2015 - 9:55 am

About three nights ago I was dealing with bad shadow pain after experiencing three cluster headaches throughout the day. It was about 8:00pm and I was just so sick and tired of being in constant pain with no sign of it ending. I was bored and typed into YouTube "headache" and this video came up:

http://www.youtube.com/watch?v=s4JafbX3WQg

The sound, called (Binaural Beats) somehow interrupts the brains pain signals and also made me feel very relaxed and drowsy. I had a wonderful nights sleep. The pain went away within about 5 minutes of listening to the sound although I waited the whole 30 minutes because it was so relaxing.

I had never heard or read about this before, it was all new. I tried it again last night and it worked for a KIP 4 cluster headache although I had to keep listening until it was over.

Stereo Headphones are a MUST for this to work and the volume needs to be loud (8/10). Close your eyes and focus on the sound.... it literally takes your mind off the pain.

This is the first drug free, alternative treatment method that I have found to be effective. The best part about it is that you can try it right now and there is no cost, ever. I honestly found it to be as effective as taking an energy drink (Red Bull).

Google Binaural Beats for more information.

I hope this works for you all.

Posted in Adequacy of A&E response to CH on 20 Feb, 2015 - 9:42 am

As a chronic cluster headache sufferer for over 10 years I have only been to the Emergency Department at a hospital once. That one time was very early in my cluster headache career and even then I only went because the initial cluster was over and I was just having excruciating shadow headche pain of which morphine did help (although I needed a lot of it).

Please do not take this the wrong way but in my opinion somebody with diagnosed cluster headaches should not be attending the emergency department at a hospital unless:

i) The pain is at a point where your mental health is being affected to the point where you are considering suicide.

ii) You have recently been put on a new medication which you are having a bad reaction to.

iii) There is something about this particular cluster headache that is not normal (unexplained symptoms, period of time exceeding 2 hours).

Cluster headaches are extremely rare, most doctors who do not specialise in neurology have not heard of them or if they have heard of them they certainly do not know how to treat them.

Cluster headaches are extremely painful, probably the worst pain you will ever experience, cluster headaches however are NOT life threatening with the exception of a deterioration in mental health (which does happen).

The emergency department at a hospital is for the saving of life and limb, neither apply in the case of cluster headache. Your life is not at risk and your head is not going to fall off or your eye fall out (even if it feels like that is what is going to happen).

I can understand somebody attending the ED or even calling an ambulance if they are having their first cluster headache or simply do not know what is happening. The fact however that you know that you are having a cluster headache and that you know what works to treat them are good indicators that you should not be arranging to go to hospital, you should be hitting up the oxygen, imigran or whatever it is at home that works for you.

You cannot expect to walk into the ED and hand the triage nurse paperwork on the condition you have and how best to treat you. Whilst this may seem like a good idea in theory it does not work in practice.

Tori - You already have O2, Sumatripan and Mersyndol at home to deal with your cluster headaches. I understand (I really do) that despite these treatments cluster headaches will still at times be extremely painful and that there is nothing else that works however going to the ED isn't going to do anything either. You have asked for advice on how to make hospital trips more manageable, I suggest instead making a personal action plan for when you get a cluster headache so that you know what to do.

For example: At onset of cluster headache take 2x Mersyndol and begin O2, if at 20 minutes there is no noticable improvement in pain use sumatripan. Go into quiet room and use ice packs / hot packs to assist with pain. Use a stopwatch to monitor time since attack started.

Salt Bush - attending the ED 4 times in 20 days is not the correct way to go about treating your cluster headaches. You have an official diagnosis, now go and arrange for some O2 to be delivered to your home so that you can treat yourself when a cluster headache strikes. The reason the staff were not interested in reading your paperwork was probably not out of ignorance, but because they are required to follow procedure and are ensuring that your life is not at risk, that you have no internal bleeding, that you are not seeking drugs etc. I can sympathise with you regarding being lectured about smoking in the middle of a cluster headache attack but it is documentated that smoking can trigger a cluster headache in some people.

If there are people who have been diagnosed with cluster headaches by a medical doctor and they are still attending the emergency department at hospital then this is a good indication that your current medication regime needs urgent review. Call and make an appointment with your neurologist and request to see him/her as soon as possible. Explain that your cluster headaches are not being controlled and request both a change in medication and a follow up appointment.

The doctors in the Emergency Department are jacks of all trade, masters of none. It is their job to save lives and they do so on a daily basis. It is, in my opinion, wrong of us to expect them to be educated on cluster headaches as this is not a life threatening condition. The vast majority of people who go to the Emergency Department have no idea what is wrong with them and therefore doctors in this setting are not used to being told what works and what does not work. They probably think to themselves that if you know what works so well.... why are you here.

Please do not misread this as me not understanding the crippling, disabling pain involved when you have a cluster headache. I also know of the panic and sense of hopelesness associated with such an attack. I have lived this for 11 years.

You are so much better of staying home and using your abortive medications than going to the Emergency Department and being frustrated that the staff do not know how to help you.

Posted in Electric shock therapy on 18 Feb, 2015 - 12:37 pm

When I was about five years old I had a "Night Light" that plugged into the power point. I was playing with it upstairs in my bedroom on my own and pulled it apart with a screw driver to see how it worked. I completely dismantled it and had the two mettle prongs that go into the powerpoint in each of my hand. I wanted to see if the light would work outside of its casing so I pressed the two metal prongs into the powerpoint and bang!

I still remember the shock to this day, it is so vivid in my mind. I was so scared that I ran downstairs to where my Mum and Dad were watching television and told them that I just electrocuted myself, my Mum decided this was a good idea to teach me about English and told me that the correct phrase was that I had experienced an electric "shock" because "electrocuted" would mean you were dead. I still do not think either of them had any idea just how close their 5 year old son had been to killing himself. I think in hindsight they must have thought I had got a static shock.

So to answer your question yes, I experienced a huge electric shock when I was young.

Posted in Would warferine work on 18 Feb, 2015 - 12:29 pm

Hi Jay

I "see your logic" behind Warfarin (I'm assuming that's what you are referring to, there is no such medication called warferine). In reality, Warfarin is not going to make any difference to the life of a cluster headache sufferer as it is not a blood thinner, it is an anticoagulant. This is a common misconception even amongst doctors.

The general consensus amongst both suffers and those in the medical field is that cluster headaches are a vascular condition and therefore vasodilators, notably Verapamil (Isoptin) are frequently prescribed to cluster headache suffers as a preventative. I personally used Verapamil up to doses of circa 900mg and had serious side effects such as dizziness and a very low heart rate. In relation to my cluster headaches, Verapamil and other similar drugs did absolutely nothing. This is not to say however that my case is normal, Verapamil is frequently prescribed as a first or second line treatment for cluster headaches and some suffers have reported significant relief.

There is a growing number of both neurologists and sufferers moving away from the theory that cluster headaches are vascular in nature. I spent a considerable amount of time researching what I personally believed the cause was and although I never found a definitive answer I am nearly certain that the root cause of cluster headaches is not due to vasoconstriction. I am of the opinion that cluster headaches are caused by a part of the brain near or in the hypothalamus releasing a chemical that either causes pain when being released or presses on a nerve when being released. I believe that in non-sufferers this "chemical" is either not released at all or released throughout the day - in a cluster headache sufferer the chemical is released "all at once" over a period of 15 minutes - 120 minutes (however long the headache lasts). The chemical could be anything, all I know is that it feels like hot acid as it gets pumped out of my brain in the case of a cluster headache or as it slowly leaks out in the case of a shadow headache.

The above paragraph is a really simplified theory and may be entirely incorrect however I remember personally undertaking a huge amount of research and there is evidence to support my theory. I even listed some of the potential names of the chemical which I believe is being released. Unfortunately I have lost all this research so all I have now is my theory with no evidence, not that it matters because even if my theory was true I had no idea what could be used to prevent it.

So in summary, Warfarin isn't going to do anything for your cluster headaches I am sorry. I would encourage you to try Verapamil (if your doctor recommends it) as some people have experienced significant relief in pain and a reduction in the number of headaches.

I personally do not take any of the normal medications used for cluster headaches as they have never made any difference for me at all. I use a daily opiate painkiller and that is all. 99% of cluster headache suffers will adamantly state that opiates do absolutely nothing in relation to their cluster headaches and that there are so many better options out there that do not have anywhere near the side effect profile of opiates - they are correct. I am simply not normal - I suffer chronic cluster headaches with periods of remission lasting no longer than 2 weeks. I had my first cluster headache when I was 14, I am now 25.

At the first sign of a cluster headache I take Neurofen Zavance which is simply ibuprofen but in a quick release capsule form and a 473mls of Red Bull. That is the extent of my treatment regime after 10 years of seeing one of Australia's leading headache neurologists and trialling many different drugs, nerve blocks and months spent in hospital.

Peace

Alex

Posted in Subconscious Mind on 19 Jun, 2014 - 5:09 pm

Finally, someone else gets it.

After 10 years of suffering with absolutely no form of serious relief from any of the normal medicines, techniques, Katy - you've hit the nail on the head.

Think about your first cluster headache, if they are anything like mine you can remember it quite vividly - for me it was in Year 8 in maths class. I hated maths, I didn't want to do it.

I am going to cop a lot of slack for this from all the cluster headache forum members but look at the date I joined this site. Read my story. I am now free of the suffering of cluster headaches. Why? How? I went back and remembered my first attack, I meditated on it for probably an hour. I remembered the sights, sounds and smell around me. I remembered the people I was with, the person I was sitting next to etc.

I didn't have to do that maths class, and I didn't have to do any of the other classes in the future. Why? Because I had cluster headaches. I forgot I had made them up, they became very automatic to the point that now, as a 24 year old, the pain is very real - but it wasn't always that real.

I am writing this from a psych ward in a hospital. I am bankrupt. I own nothing. I am on methadone because I became so addicted to painkillers. I am however feeling the best I ever have emotionally, because I remember that I made up my first cluster headache, after then it became very automatic and before you knew it bam I had them three times a day every day for the rest of my life. In order for me to be right others had to be wrong - these weren't migraines, the weren't normal headaches, they were something far worse!

I don't know if what I am writing makes any sense, but it's the truth. I made up my first cluster headache to get out of what I had to do, the rest were just automatic recalls of that excuse. With that, I am cured.

Posted in Video - Me during an attack (Warning: Graphic) on 19 Apr, 2014 - 7:24 pm

The purpose of me posting this video is explained in the description. The Australian Government needs to subsidize Imigran MKII Injections on the Pharmaceutical Benefits Scheme. Additionally, I wanted to give some idea to non-suffers of what we go through and what efforts we go to in order to get some control over the pain.

The video is embarrassing to me, but I hope it does something to educate others and bring our condition out into the open.

Posted in Stuck in Prison on 11 Feb, 2014 - 10:17 am

Hello St Peter

Good to hear from you mate. I'm currently recovering from a hernia repair so for the next week I have no other option to rest (I'm using that as my excuse for now LOL).

Still waiting to hear the result of my application to have the Disability Support Pension approved, at the moment I'm on sickness benefits.

Yes - My Mum is amazing.

You are correct, I need to become more active, but I need to initiate this slowly and work my way up to walking for an hour each morning with breakfast.

Cheers Mate, I hope all is well with you.

Posted in Stuck in Prison on 09 Feb, 2014 - 2:35 pm

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Hello Clusterheads

Brief intro for those who don't know me (I only post when I feel like it):
First c/h at age 14 in 2004 (Year 8)
Diagnosed at age 16 2006 with episodic cluster headaches (Prof. Alessandro Zagami)
Diagnosed at age 20 2010 with chronic, treatment refractory cluster headaches
Now 24 years old, unemployed and on sickness benefits due to cluster headaches

Right now I'm doing OK - but I want to discuss activity / moving / exercise / daily tasks that may impact on cluster headaches, specifically your heart rate. I would be very interested to know what your resting heart rate is, what your normal heart rate is (walking slowly, doing chores) and what your heart rate is when you experience a cluster headache.

If there is one thing I have learned on this forum it is that although we all share a common, crippling and dreadful medical condition that severely impacts our lives we have not yet found a cure or treatment method that works for 100% of us. We all have different lifestyles and triggers. We all have our own opinion on what causes our headaches and nobody (including our medical professionals) really understands the underlying cause behind our condition.

I currently live with my Mum and brother. If it wasn't for my Mum I wouldn't be here today typing this message - my mother has stood by me at my worst and unlike me has never given up hope. She has encouraged me to do what I can, when I can, yet understands my limitations.

For the most part, I stay in my bedroom lying on my bed. This is how I spend most of my day, I am not depressed (I'm on 2x anti-depressants) but often feel bored and isolated. I do not suffer from social anxiety, the only reason I spend so much time lying down and in my bedroom is because the number one trigger for me, in fact the only trigger I have been able to really pinpoint, with the exception of alcohol, is an increase in my heart-rate.

I have recently returned from hospital where I had an unrelated procedure undertaken and was intrigued at how often the nurses took my observations. I have a very slow resting heart rate (46bpm), I do not take Verapamil or any other blood pressure medications and when I do they make me extremely dizzy and nauseous.

When I wake up in the morning I am usually pain free. It isn't until I get out of bed that I can tell whether I am going to have a bad day or not, it's that first moment when I stand up and my heart rate elevates that I can tell if I'm going to have a good day or a painful day. I use the bathroom and then go back to bed. If I have something on during the day which is essential, such as a medical appointment, I take my painkillers and do my best to take it easy, walking slowly and not worrying (which also elevates my heart-rate).

Ideally, I would love to be able to maintain a consistent 46 beats per minute throughout the day. I think if I was able to do this I'd be pain free. Unfortunately, life gets in the way and I can't stay in bed all day everyday.

I'm at the point now where I wonder how I'm going to live the rest of my life. I have stopped working full-time and I'm now on sickness benefits. I have declared bankruptcy and do not own a motor vehicle or have any possessions other than my laptop and mobile phone. Such is the life of a chronic cluster headache sufferer.

I have found myself spending days, sometimes a week in bed doing nothing but surfing the internet or watching television. To others it looks like I'm terribly lazy and unmotivated - nothing could be further from the truth. I love business, finance and politics. My ultimate goal is to set up my own business with the ability to work from home. I just cannot see myself at this point in time ever working in a 9-5 job despite how badly I want to.

Even typing right now, my left hand is shaking because of the Lyrica my pain management doctor prescribed. I have a gash to my right side where I wrote off my motorcycle last weekend (I know, bloody stupid thing for a person with cluster headaches to do) and of course I have a nagging. boring pain in my right temple and eye. All because I decided to post a message on a forum instead of lying in bed not moving.

Movement = Increased Heart Rate = Pain
Stress = Increased Heart Rate = Pain

I am determined to make 2014 a new beginning. I am still practicing mindfulness and learning to accept that for now and probably the rest of my life this is how things are and are going to be. I know my limitations, I accept them and understand them.

Thankfully, I live in an age where it is possible to work from home using a computer. I am thankful that I have a genuine interest in finance and business which gives me the motivation to accept the pain I experience and study. I am thankful that I'm young, 24, and that declaring bankruptcy won't have a significant impact on my future. I am thankful that this forum exists so that I can type to people I have never met and know that at least some will understand this rant.

I have one friend left who I still speak to, he understands my condition and forgets the many times I've promised to meet up only to cancel at the last minute due to my headaches.

My prison consists of my bedroom, within it lies me, my bed, my laptop, mobile phone and several ice-packs. I have no job, but I don't owe anyone anything either.

I have learned that sometimes it takes loosing everything to discover who you really are and what really matters.

I love my new life actually. Despite the pain, I know my limitations and I'm ready to take on the world with that knowledge. One day I will succeed in my goal of setting up my own business from home. In the mean time I take one day at a time and study when I can, on my good days.

End of rant. Thanks for your support.

Posted in Recently Diagnosed on 24 Oct, 2013 - 8:45 pm

Hello Edee87 and welcome to the forum mate.

You're 27 and should be at the prime of your life, I'm willing to offer whatever advice I can in order to help you.

There is a wealth of information on this site and none of it is worth skipping over, I had my first attack at 14 (in maths class, I remember it like it was yesterday) and was officially diagnosed when I was 15 by one of the countries leading Neurologists.

I understand your pain, I am a chronic sufferer with no periods of remission lasting any longer than 3-4 days. I experience 3 headaches a day at the moment, each lasting around 90 minutes.

Firstly you need a diagnosis, it's very easy to get cluster headaches confused with other (and sometimes more serious) conditions. Tell your neurologist everything and ask for an MRI scan to rule out anything nasty.

Buy a diary and begin to record your attacks (or open up a spreadsheet on your phone or computer). Record the time, duration and intensity of the attack, try and see if you have any triggers such as alcohol and do whatever you can to avoid them.

Welcome to the forum, I hope that you find your headaches are only limited to Tuesdays and that the normal preventatives and abortive medications provide you with some relief.

Let us know how you go, we do all care very much in this forum.

Posted in Sufferer for 10 years on 22 Sep, 2013 - 8:34 pm

We will continue this thread because it was started by somebody other than you open to seeking help with her headaches, you sort of hijacked it and took it off into another direction alotogether.

'Ex-Cluster Headaches' - mate you've got to be kidding. Look at all the red 'Currently Suffering' in this thread.

What we're all trying to say is you're welcome to join us, tell us your story, your successes and failures with meds and various other treatments. Just don't get so wrapped up on one solution that'll help all of us.

If you want to leave that's your choice, but at the end of the day this isn't a place for bickering, arguing or advertising. Leave your mental stress, anger at the world and subtle insults when you sign in, there's enough pain in these forums as it is.

Posted in Sufferer for 10 years on 22 Sep, 2013 - 11:11 am

SKW said:
Unfortunately it is these forums and contributors like you who kills "hope" for others. I believe that when we "contribute" to forums or blogs, it is because we are passionate about something relating to the subject matter or cause. This is why I wrote.

"These forums" + "Contributors like you".

SKW you've been a member for 3 days and made 5 posts, 4 of which are exactly the same. We're a very close knit community, we've probably saved lives and we've definitely helped many, many people. When somebody comes on here and makes a suggestion, we take it seriously as we are all in immense pain trying our hardest to find anything that brings relief.

Relax, take a chill pill and get to know us a bit better. Chances are you have a lot more to learn about cluster headaches from this website and the posts contained within it than you have to offer (not to say it isn't appreciated).

Posted in Mindfulness on 17 Sep, 2013 - 7:15 pm

PM sent, book purchased for $12.99 on Kobo.com. Thanks!

Posted in Why Russia? on 17 Sep, 2013 - 7:14 pm

I've wanted to travel to Russia for ages, specifically Moscow and St Petersburg. It certainly seems like a very "different" (and I mean that in a nice way) country, much more of an adventure than a relaxation holiday. Who knows, I'm off to the US in December but maybe next year sometime? It'd be great to catch up.

I'm not sure "my type" are welcome in Russia, or is that just the vocal minority?

Shrek

Posted in I am still here--long time no speak on 17 Sep, 2013 - 6:57 pm

Hi Heather

I didn't know there was another chronic sufferer on here. I've found finding a routine one of the most effective ways of making it through each day. I'm still working shift work which literally makes it impossible to find a set sleep pattern, in fact that's something I really need to work on changing ASAP.

I'm a member of a number of internet forums and one of the unique characteristics about this one is the number of members who come and go - but they're the same people. It's easy to forget about cluster headaches when you're out of cycle (and good on you - go out and enjoy your pain free life when you can), it's just sad to see the same people come back X amount of months later with the subject "they're back".

It's a horrible, horrible condition we suffer from. The support found on this forum makes it so much easier.

Posted in Mindfulness on 17 Sep, 2013 - 5:43 pm

Mmm, again very similar. What's the book?

Posted in Mindfulness on 16 Sep, 2013 - 6:10 pm

I'm sorry Saint Peter you're going to have to resend the title of the book. I will read it, I promise. Yes - the strength required to do anything lies within you.

Quick question and please feel free to not answer, are you religious at all?

Posted in How to split an Imigran injection on 16 Sep, 2013 - 6:08 pm

Oh how I miss Imigran Injections. I was admitted to hospital for a few weeks a while back for an unrelated matter and simply put that I used Imigran Injections for c/h relief three times per day on the admission form, that was three solid weeks of no headaches and being in hospital as an inpatient the cost was included in my insurance.

Let's add up how much it would have cost them:

2 injections = $124.39* / 2 = $62.19

3 weeks (21 days) = $62.19 x 21 = $1,306.09

*Source:
Chemist Warehouse Imigran 6mg Injection Refill Kit
http://www.chemistwarehouse.com.au/product.asp?id=54900

Unbelievable.

To put that in perspective I'm a chronic sufferer and Imigran MKII is the only medication I've used with absolute success, it works every time without fail meaning I'd be able to work full-time in a career requiring me to think clearly. In order for this to become a reality, I'd need to make an AFTER-TAX salary of $68,098.05.

Instead, I take medication to 'mask' the pain. Ah, the frustration of it all. I'm so over this and I can't wait until the day the Australian Government puts Imigran MKII on the PBS.

Posted in Mindfulness on 14 Sep, 2013 - 11:50 am

It was you St. Peter!

I initially laughed at the thought of it, not allowing yourself to suffer from cluster headaches.

I was referred to a pain management clinic for no other reason than to fulfil a legal requirement to continue the meds I was on - turns out he was one of the most understanding and sympathetic doctors I'd ever come across. He said it so bluntly:

'Alex, you're here because your neurologist cannot help you anymore. We've tried everything, you are going to have to accept that there is no operation, medication or procedure that will help you in 2013. Maybe in 2023 it will be different but for now it's up to you.' Or words to that effect.

I had a paradigm shift and my energy spent searching for new meds, new doctors, new whatever's stopped. I decided to use that energy to just make it through each day. I then coincidentally had this course at work which touched briefly on mindfulness and as I said earlier I am forced to practice it 3x each day. I focus my mind on nothing but my breathing, of course I can still feel the pain but because I've 'accepted it' the fight / flight response has gone.

Posted in Sufferer for 10 years on 14 Sep, 2013 - 11:36 am

Vixen I only just read this post before replying to your PM. From what you've stated and from what I know through having diagnosed cluster headache, it seems unlikely you have them.

You stated that your headaches move from one side to the other, this is possible but unlikely. Generally speaking it's the same headache, at the same time each day, at the same spot in the head, for the same duration (think Groundhog Day).

The biggest indicator for me that you don't have cluster headaches is that it takes the same amount of time to recover than it did for the headache to occur - again, this doesn't really describe cluster headaches with its 'switch on / switch off' profile.

What you are describing is disturbing. You need to get urgent professional medical help and a diagnosis. Do it during your pain free moments, a doctor can certify you unfit to job seek due to medical conditions (using a centre link medical cert). As to what damage is being done, if it's a cluster headache then none apart from the psychological implications. I'm more concerned you have something else. Go and see a neurologist and don't have any pre-assumptions as to what you have - that's his/her job.

Good luck and keep us updated.

Posted in Opioids don't work in CH. on 13 Sep, 2013 - 12:08 pm

Note the article states that codeine is especially singled out as causing rebound headaches, in my experience this is absolutely correct and I believe the same may apply to paracetamol which most codeine preparations include.

I still completely reject the blanket statement that:
'Opiates don't work in c.h'.

I'm living proof that they do. They also suck big time and the side effects are severe and risk of dependance high. Still, when everything else has failed I refuse to suffer 8-9/10 pain 3x daily when I know I can mask it down to a 4/10 using opiates. Thankfully my doctors concur.

If anything else worked, anything at all - I'd pick it over opiates.

Posted in Opioids don't work in CH. on 13 Sep, 2013 - 12:08 pm

Also Ben in your list of 'tried' opiates you're missing out on a big one, unique from others that I'm currently using which is working better than anything else I've ever used. Fentanyl.

Posted in Mindfulness on 13 Sep, 2013 - 1:49 am

Dear Friends

I recently attended a course at work and a component of it included 'Mindfulness Meditation', now before you all tune out now please understand that I am a huge skeptic and really not the sort of person to seek out alternative therapies. In fact, mindfulness meditation is not so much a therapy as it is a process of simply bringing your mind into the present moment and living breath by breath.

I cannot remember who said it, I think it may have been Ben but on this forum someone stated they'd stopped suffering from cluster headaches and simply began experiencing them. This simple sentence has stuck in my mind and through practicing mindfulness I've begun to understand the implication of what was being said.

The process of mindfulness is ridiculously simple and one of the original books on the subject is 12 pages long. On iTunes or Spotify there is a CD called 'Mindfulness for the Workday' and it is well worth the $18.00.

Essentially through practice (being a chronic, 3-4x c/h per day sufferer gives me a lot of time to practice) it becomes possible to remove the panic, flight or fight mechanism by simply focussing wholly on the present moment. Yes, the pain is still very much there and very real however with mindfulness I have completely changed my outlook on it. Rather than clock watch, pace, reach for pills, pull at my temple, push against my eye etc. I can now lie down in bed and permit myself to experience each cluster headache for what it is - a temporary uncomfortable sensation that I have no control over.

This isn't for everyone but I've put it in my toolbox and I'm finding it very, very useful. Prior to this I've had no experience with meditation, I am not a Buddhist, but wow - this has helped and it's completely free of charge.

PM me if you want more info or google mindfulness and pain management.

Cheers

Shrek / Alex

Posted in Opioids don't work in CH. on 25 May, 2013 - 9:34 am

Chronic cluster headaches are the absolute pits. One advantage however is that you're literally forced to make big changes to your life which actually end up being beneficial in the long run. For example, I've now made a change in my job where I'm alone for 95% of my shift, I don't drive, I have my medication with me wherever I go and everybody I associate with knows about my condition.

I know I have limitations, for example I am focused on paying down all my debt as a matter of urgency. I won't use credit cards, I will never buy a house that requires me to take out a mortgage. I don't really know where I'm going with this post but I'm trying to convey the 'disability' mindset associated with chronic c/h's and the changes in lifestyle it demands.

I'm a little busy this morning but this evening I'm going to start a new thread regarding coping mechanisms outside of pain relief (lifestyle changes) that I've found beneficial. I've found we are all so focused on the pain aspect of our condition we often neglect to talk about the psychological, social and lifestyle changes we can make in order to make our lives that little bit more easier.

I'm off to start my volunteer work, I'll be back later. Have a pain free day everyone.

Posted in Financial coping strategies during CH cycles on 23 May, 2013 - 12:21 am

Hello Belle

I hear you loud and clear. How difficult it is to walk into work 2 hours late looking perfectly fine (the off and on nature of our disease) only to explain that you had a 'headache' - yeah right thinks the employer and you're left feeling not only exhausted from the pain you've just been through but justifiably frustrated and embarrassed at being late.

Worse still, that feeling just before a meeting or important task where you just know you are going to get hit. How do you do it? You can't just run and hide in the bathroom for 2 1/2 hours - it's a nightmare and I know exactly how tough it can be. Full time work and cluster headaches don't mix.

This is where so many people become unstuck. The psychological effects of having cluster headaches is nearly as bad as the pain itself. I experienced it today, I work shifts and arrived at work at 12:30pm an hour early ready to start at 1:30pm. There's a cafe outside work and just as I sat down I felt that sinking feeling where you know you've got 5 minutes to go of sanity before the beast rears its ugly head. I had about 10 colleagues at my table and the conversation went like this:

'Alex, you look terrible and you're very quiet, what's wrong'
'Cluster Headache' * stares off into oblivion
'I saw today tonight last night, did you see it? A cure for migraines!!!'
'Not migraines, much worse, cluster headaches'
'Oh.... I have 2 Panadol, would you like them?'
'I've just taken serious medication, I'll be ok soon, just need to chill for a bit'
'Yeah your eyes look like you're all drugged up, did you have a big night?'
'No, cluster headache'
'Oh.... What are they like? I had a 5 day migraine once'
'I don't mean to be rude, but I'm in a shit load of pain, just need to chill'

Everyone starts talking again, another few people arrive.

'Hi Alex, you look sick - what's wrong?'
'Cluster headache'
'Oh, you should go home'
'By the time I get home I'll be fine'
'There should be a bed or a sick bay'
'(No response / KIP8)'

Another few people arrive, too much pain to get up and move.

'Alex, do you have the flu? You're face is red and you can't stop blowing your nose'
'Cluster headache'
'Oh, what are they?'

I have my iPad with me, bring up the Wikipedia entry for cluster headache, pass it around the table.

'Oh.... Shit, worse than childbirth - you should go home'
'Keep reading, 30 minutes I'll be fine'
'Oh ok, I'll see you upstairs'

Sure enough, the headache goes just in time to start work. A few people make nice comments. One guy texts me and says he hopes I feel better.

2 hours into work I'm called back into the office. On the walk all that's going through my mind is that somebody told a manager I looked really sick, out of it or worse on drugs. I'm expecting the worse. Turns out if was something completely unrelated.

I can't help you out here I'm sorry Belle. I'm going through a period where I'm questioning my own ability to work full time, especially in a job I'm not passionate about. I'm planning on going through the next 6 months in order to clear as much debt as possible and look at returning to full time study at University.

I was speaking about this to a friend the other day about how much cluster headaches have interfered with my career. She actually gave me some brilliant advice:

'Explain that you can be the best employer ever for most of the time, but for 2 hours you need time to yourself because of a medical condition. Show your employer some information regarding headaches, explain that you'd be happy to use that time as your lunch break and that you could work extra hours if need be'.

The other option is the disability support pension - speak to Ben about that. Companies operating in Australia have a duty to cater to people with a disability, it's certainly worth bringing it up with your employer and negotiating changes of hours etc. Some people will go out of their way to help you, others will never understand - those people aren't worth working for anyway.

I believe I have a successful career ahead of me which I'm prepared to work for. I also realise that in doing so I'm going to need to be completely up front at interview time and state:

'I can be the best employee you've ever had, but I will occasionally need 2 hours where I can isolate myself because I suffer from this condition (show info)''.

Work for me is very important, but thankfully I'm not driven by money, rather causes. This enables me to surround myself with people who genuinely care about their work and I hope will be willing to take on somebody with a disability.

Realise Belle that by simply working full-time you are doing something remarkable. I'd suggest you speak to your manager before resigning. If you're episodic, explain than in a few months you'll be back to normal. If Imigran works for you try and use it if there are important meetings etc. Try and find some abortives you can use at work.

Most importantly, let people around you know what you're going through. I was surprised at the response I got by showing one Wikipedia article on my iPad today. Now 20 of my work colleagues know that I'm not making it up and that the pain is just as bad as I make it out to be.

Most importantly, don't be embarrassed. You did nothing to bring on this disease and were dealt a shit deck of cards. I have had to change my career goals because of my disease, but in doing so I've found an area of work which I believe will be much more rewarding.

Good luck!

Posted in Opioids don't work in CH. on 22 May, 2013 - 6:26 pm

I owe a reply to Ben who has been extremely helpful in reassessing my situation.

I stand by my statement, cluster headaches are such an excruciatingly painful disease and when an individual has failed to respond to normal treatments and experiences headaches chronically, without remission, any medication which provide a degree of relief is warranted.

Are opiates indicated for patients with cluster headaches? No, they're not. Are they a good idea? In 99% of patients no. I'm the 1% and have multiple specialist reports to prove it, additionally I have other medical conditions which are undisclosed which warrant treatment.

I'm signing off the Internet for a while. It begins to become too stressful. Thanks for your help everyone.

Posted in Opioids don't work in CH. on 20 May, 2013 - 9:22 pm

Hi Ben

We'll most probably have to agree to disagree on this subject and I know you won't take this personally which is why I'm going to say it.

As you and most of the forum know from previous posts I have tried every preventative and abortive medication indicated for cluster headaches, available within Australia with the sole exception of mushrooms. The only reason I don't use mushrooms is because they are illegal, it pains me (figuratively and literally) that there is no medication derived from psilocybin or other sub-hallucinogenic substances which could be trialled but the fact remains there isn't. I would willingly participate in any clinical trial or use the drug abroad where it is legal but due to my own ethical principals I just cannot allow myself to go ahead with it. I do not judge others for doing so, I just cannot do it myself. I genuinely challenge any forum member to name a preventative or abortive which is available that I haven't tried.

The only drugs which have had a positive impact on my headaches are:
i. Imigran Injection (Complete relief, frustratingly expensive - tablets and nasal spray don't work).
ii. Greater Occipital Nerve Block (First one gave complete relief for 3 months, second had no effect at all, third provided a 2-3/10 drop in pain level for 3 months).
iii. Neurofen Zavance combined with RedBull (Effective in aborting headaches when taken within 2-5 minutes of first sign of attack, became completely ineffective when my cluster headaches moved from episodic to chronic).

No other medication treatment has resulted in any difference, either positive or negative.

Now, back to the original subject: Opiates.

I discovered the effects of codeine on my headaches whilst being treated for another medical condition. Thanks to the ignorance of my previous GP I was prescribed it for the treatment of my cluster headaches. Codeine originally alleviated my shadow headaches completely and improved attacks by between 3-5/10. I was taking tablets containing Paracetamol 500mg / Codeine Phosphate 30mg. During this period I was episodic with clusters averaging 3 months duration, 2 headaches per day with remission periods of up to 5 months.

Herein lies the problem with opiates: tolerance and dependence. Note I refuse to use the word 'addiction'. Addiction is a disease in its own right and not relevant to this particular post regarding the efficacy of opiates for cluster headaches. Please don't misinterpret what I am saying, to clarify, I'm simply stating that when used exclusively for pain relief - requiring more and more of a drug is not by definition 'addiction', it is 'tolerance'.

In 2009 my headaches became chronic and my tolerance built up, that is to say I required more and more of the drug in order to experience the same level of relief. My GP swapped Codeine with Tramadol a strange kind of opiate / anti-depressant mix. Tramadol also worked well for a period of 3 months, I was taking 200mg twice daily (maximum allowable dose). One afternoon I forgot I had taken my afternoon dose and took it twice, I sat down to watch a movie and woke up in sheer panic with 2x paramedics staring at me. I had experienced a grand-mal seizure for approximately 10 minutes, I was extremely lucky not to have experienced brain damage. It was by far the most scariest experience of my life. I was admitted to hospital and advised I was allergic to Tramadol and that if I ever used it again I could die. I was transferred to immediate release OxyCodone 5mg (Endone). OxyCodone is a synthetic opiate, approximately 1.4 x stronger than Morphine.

After 1 month of taking 5mg Endone I was experiencing no pain relief due to tolerance. I was changed to a controlled release version of the same drug (trade name: OxyContin) at 20mg twice daily. This provided partial relief of cluster headaches and full relief of shadow headaches. Within 6 months I was taking 40mg three times a day.

For me, the worst thing about cluster headaches outside of the pain is the complete lack of understanding shown by nearly everybody outside of my Mother, younger brother and 5 out of the 30 doctors I've seen. Combine this with an addictive drug like OxyContin and the sympathy experienced decreases tenfold especially when you are a young male.

To cut a long story short I had built up a physical dependance to OxyContin whereby I could not go through any longer than 20 hours without medication before experiencing withdrawal symptoms. Opiate withdrawal symptoms are indescribably, the only pain worse that I've experienced is the very pain that led me onto these tablets. I was admitted to a private rehabilitation clinic and monitored by a Psychiatrist, a GP and several mental health nurses over a continuous 3 month period.

It is this experience that enables me to confidently state my opinion that in some extremely unusual and rare cases, opiates work and are justified for cluster headaches. During my stay in Currumbin I was withdrawn off opiates completely. My room was opposite the nurses station and a 50m walk to my psychiatrists office. My psychiatrist had a copy of my neurologists reports which proved 1 thing, I experienced cluster headaches at least 7 years prior to me first being prescribed OxyContin.

I went through full opiate withdrawals over a 4 week period. Why was I not discharged then? Because I was the sickest I had ever been, my chronic cluster headaches (3 x daily) were not under control. My psychiatrist made me select from my list the top 5 medications that I had found to be somewhat useful in treating my headaches outside of opiates. I chose 3x preventatives (Verapamil, Epilim, Melatonin) and 2x abortives (O2 and Imigran Injection). I was monitored 24/7 for one month on the above medications with no opiates and having been off opiates for an additional month.

This month was actually one of the most enjoyable months of my life, why? Because I had access to unlimited free Imigran Injections!!! I had private health insurance and as Currumbin Clinic was a hospital all medications were covered. My psychiatrist had worked his magic and I was now off opiates and experiencing little to no pain. My psychiatrist at the end of month 2 asked me why I didn't use Imigran all the time, I explained that outside of the hospital it was $109 for three injections (at the cheapest pharmacy I could find). He looked at the months history and worked out that each month I would be spending approximately $3500.00.

The plan for month three was basically the same as month 2 except I wasn't allowed the Imigran Injections. The nurses called my doctor in at about day 3 and said they'd seen enough. The sight of watching me suffer 3 cluster headaches a day was apparently too much for them. I remember at one point the nurse called my psychiatrist who walked in to find 4 used ice packs and about 50 used tissues on the floor (I'm normally a very tidy person) and I had my head under this tiny basin trying to flush the cold water into my eye. It was at this pom the called me into his office and prescribed the exact same dose of OxyContin I was admitted with. He told me quite bluntly that in my case the risks of OxyContin dependence are nothing compared to the pain I was experiencing and that should I struggle to obtain prescriptions in the future based on an unsympathetic GP to call him.

In summary:

I wouldn't recommend opiates to any cluster headache sufferer. They are as Ben said not very effective. At their absolute best they provide an improvement of 4-5 points on the KIP scale and alleviate shadow headaches. This lasts for about a month until your tolerance builds and you need a higher dose. After 3 months of treatment you will be dependant on them. Being dependant on a drug sucks big time. It means you can't go away on holidays without organising tablets, it means your ability to get through the day relies on a doctors ability and willingness to prescribe them to you. It means you will be viewed by the vast majority of people as a drug addict (even the people who know you very well - it helped ruin a relationship with someone I (at the time) loved and thought I had a future with. It complicates an already very complicated medical condition.

The only reason I take OxyContin today is because I know through experience that the alternative is worse, only marginally, but worse. As no other medication has proved effective for me, this is all I've got. The side effects are horrible - constipation, agitation, fatigue, rapid weight loss etc.

If anything else works for you, even if it doesn't work as well as you'd like - take that instead!

So Ben yes, opiates and cluster headaches in the vast majority of cases are a terribly bad idea. In some cases though, they are the only thing which enables a person to make it out of the house each day.

I cannot wait for the day I don't have to take these tablets each day. Whenever I feel my headaches are getting even fractionally better I immediately lower my dose of OxyContin. Sometimes (like now for me) the tolerance builds up too quickly and there is no relief to be seen, the dose needs to be increased or a hospital visit is in order.

Opiates and the associated pain is the second most painful and negative part about my life. If I could deal with the first issue in any other way I would. I say that without a doubt in my mind.

Posted in Noises during and post c/h attacks on 20 May, 2013 - 8:22 am

Quick question, does anybody else experience a bubbling or creaking type sound near there ear or jaw when experiencing a c/h?

I've noticed I can hear a crackling type noise towards the end of my attacks and can feel an associated 'release' of tension. I believe that this is due to my nerves and muscles relaxing after being so tight. It's making me research into alternative theories that c/h are not so much vascular as much as they are almost like seizures. I'll elaborate further if required - need to go to work.

Cheers,
Alex

Posted in 10 Year Anniversary on 20 May, 2013 - 8:15 am

Dear Ben

I remember you very well during my time in Prince of Wales, I have no idea why you'd be under the impression that I didn't 'like' what you had to say. You're right in your assumption that I am not seeking sympathy - it's rather useless and personally unless it comes from somebody who is me ie. nobody, then it's rather insulting.

I need facts and workable theories in order to make the next 10 years alive, let alone productive of better than the previous. You state the situation as it is and for that you have my utmost respect.

I'm on a crowded train this morning on the way to work as I type this. The only reason I'm able to sit here after experiencing 10 degree cold and walking into a heated train (temperature changes, specifically artificial heat are major triggers) is because I took my pills this morning. I'll take another when I arrive at work in about 45 minutes and another at lunch and another tonight. Hopefully they'll be effective today in permitting me 4/10 shadow pain. There will most likely be a 90 minute cluster at around 10am so I'll schedule my day so that during that time I can disappear from my colleagues and boss. As I said, I'm not seeking sympathy - just explaining what my day is like as you did yours. In about 2/3 months my tolerance will be too high for the meds to make any difference and I'll take my 'annual leave' to go through withdrawals in order to then go back on the medication and for it to work again. The next 3 years will be similar. Why 3 years? Finances. You're correct in me needing to experience a Copernican Revolution and this will happen, I know now that I cannot function in the way a normal person can - but this doesn't stop me achieving my goals - it merely changes the method by which I do it.

I'm now at Town Hall, Sydney and need to grab a coffee, take my tablet and go through the motions of looking productive and busy. Tomorrow is my day off, I have a meeting with my GP and will send you a PM if that's ok regarding my actual plan for the future. I need your help and guidance if that's ok with you. I'll explain more tomorrow.

I wish you a pain-free and enjoyable day my friend. I'll be in touch tomorrow as promised.

KIP-0,

Alex

Posted in 10 Year Anniversary on 17 May, 2013 - 6:21 pm

Dude, thanks. I wrote this post at lunch, went out for a meeting and thought about coming home and deleting it. It's negative - but honest.

Thanks for your reply, it means more than you realize. It often feels so damn lonely suffering day after day, you forget other people are going through the same thing.

Posted in 10 Year Anniversary on 17 May, 2013 - 12:20 pm

icon
I decided to start this post with a smile emoticon because it's as close as you'll get to a smile in this post.

I'm not a regular visitor of this forum, but I share the pain and intense frustration that each and every CH sufferer goes through each and every day. I'm simply in the mood to write and hope that somebody, somewhere will get something out of this no doubt long and dragged out story.

10:00am, one day in May 2003. I'm 13 years old and have just stood up from my desk at school after finishing a history class. My next class is maths conveniently located in the classroom next door. I'm doing well by all accounts, in the top 10% at school, according to my report "a promising young man, highly intelligent and shows maturity well beyond his years".

I sit down ready for maths and it hits, something is hitting me in my right temple. I had my backpack on my desk ready to get my books out and simply rest my head on my bag at my desk. The teacher immediately notices something isn't right and asks me what's wrong. I can't talk, I can't move, I just sit there with my head resting on my bag. I mumble something about pain, my eye is watering, and all of my friends are staring at me. The teacher walks me down to the office where there is a bed. I’m asked questions by the school nurse but I can’t answer – it hurts too much. In 15 minutes my Dad is at school, by 10:45am I’m in my GP’s office having a pethidine injection. The Dr wants me to wait until the pethidine has worked before I leave. At 11:30am I’m fine, although feeling a little bit dopy.

The next day I go to school, at 10:00am the same thing happens. This continues for a few weeks and I take a lot of time off school. My parents were concerned; did I have a brain tumour? Was I making it up? Was I depressed? My family GP (kind, caring but highly incompetent when it comes to pain) sent me for an MRI scan which revealed all was OK. It must be psychological; nobody can be in this much pain every day. I must be depressed and just don’t want to go to school.

After 3 months the pain goes away, 3 months later it comes back. It’s now 2004 and I’m in Year 8, the headaches continue and my GP refers me to a neurologist. I see the neurologist with my Mum, I’m diagnosed with cluster headaches. I learn they’re treatable, fantastic. I’m happy that I finally have a diagnosis and medication. I start taking Isoptin which makes me feel dizzy when I stand up and tired, but it’s a hell of a lot better than the daily headaches.

It’s the end of 2004 and I’ve had 104 days off school (nearly half of the school year), my grades have plummeted, I’ve lost contact with most of my mates and the crucial support that they provide when you’re a teenager trying to grow up. I’m actually genuinely depressed now and incredibly frustrated. My neurologist tries new medications and lots of them. Nothing works, nothing has any effect.

I leave school and decide to complete my Year 10 equivalency at TAFE. I’m bright enough to cram 2 years into 1 and believe that going to TAFE will enable me to work around my cluster headaches. I’m now 15 and have a small lipoma on my right wrist which is too close to the nerves in my hand to have it removed at the doctors’ surgery. I have it removed in hospital (day surgery) and leave with a packet of 50 Panadine Forte tablets for the pain. There isn’t really any pain in my wrist, but hey – these tablets actually work for my headaches and very well! I tell my GP who is happy that I’ve found something that helps and begins writing regular prescriptions. For a while there I’m pain free.

I graduate from TAFE having completed Year 10 and have my heart set on becoming a Police Officer. I’m still only 16 so far too young; I get a job doing administration work. It’s now 2006 and I’m at work sitting in front of my computer. 10:00am rolls around and bam – I get hit again, I take 2 Panadine Forte, it doesn’t do a thing. I take 2 more, it still doesn’t work. My boss calls me to her desk to ask my why I’m crying at work. I’m not crying, my eye is watering because of the headache. I run with it though and ask to go home. I stumble downstairs and cannot fathom the idea of walking to the train station and catching a 60 minute train ride back home. I’m panicking, in excruciating pain (KIP 10) and hail a cab. I pay $80 for him to drive me home whilst I lie down across the back seat wriggling around trying to get some relief from the pain. By the time the taxi arrives home the pain has completely alleviated – I’m perfectly fine. I wonder why the hell I just left work and spend the rest of the day at home.

This continues day after day, I keep seeing my neurologist; I try every drug listed on this forum and 100 more. Nothing works. I tell my boss what’s happening and she allows me to take my lunch break at 10:00am each day instead of 12:30pm with everyone else. The headaches were so predictable it was almost convenient.

It’s September 2006 now and I’m really beginning to feel severely depressed; I’ve lost all contact with my friends from school and have nobody my own age who I can relate to. I decide to go back to school as my friends have now completed Year 10 and are entering Year 11.

I’m now in Year 11 having spent 2 years out of school and 1 year working full-time. I struggle to keep up with the level of work expected preparing for my HSC and I know deep down inside I’m not going to be able to do it with these headaches. I’m still taking a lot of time off sick which I spend at home feeling miserable. My consultations with the neurologist continue with more new drugs to try. Nothing works, nothing makes an impact. I’ve also moved from episodic clusters to chronic clusters. I never get a break, every day I’m in pain. I leave school for the second time and get a job somewhat related to being a Police Officer.

It’s now 2007 and I’m actually enjoying my new job, it requires working shifts which means most of time at 10:00am I’m at home and can just get my headache done with. I begin to get shadow headaches but learn to live with them – what other option do I have? I keep seeing my neurologist every 3 months and try more new medications. I’m now up to over 600mg of verapamil each day which is making me feel terrible, dizzy and doing nothing for my headaches. I apply to join the Police and pass everything; all that’s left is the medical declaration. I get a letter in the mail stating that based on my medical condition I am not eligible to become a Police Officer. I’m shattered, completely depressed in pain every day and just fed up with life.

My work becomes my entire life. I quickly learn I can’t go out and drink alcohol on the weekend; it brings on a KIP 10 in less than 10 seconds. I’m on so much medication I feel sick and don’t eat.

I get the courage to go out one night and find someone I really like and get along with. I move interstate to live with my new found partner. I’m happy, for the first time in my life I’m really happy. On the second night after leaving my life behind in Sydney I come down with a KIP10. My partner is scared, I go and see a GP and try to explain my past history regarding headaches.

Now I’ve got a problem, I’m a 19 year old male who has just moved interstate and is trying to tell every doctor he sees that he suffers 10/10 pain. I don’t have any proof of the pain I’m in, it’s just my word. I have my medical history from my neurologist in Sydney but that’s it – nobody knows me up here on the Gold Coast and I’ve never in my life found it so difficult to find a doctor who believes the pain I am in and is willing to treat it.

I fly back down to Sydney once every 3 months for an appointment with my neurologist. My partner becomes suspicious of my constant doctors’ appointments, medication and pain that just magically disappears as soon as it comes on. My partner goes to work whilst I stay at home. I try to start a business to earn some money trading shares online, it works for a while. I’m lonely again and fed up with the pain.

From 2009 – 2011 I see a total of 10 GP’s and 2 neurologists. My medication list is as long as the bible and I’m still experiencing chronic cluster headaches. I don’t have a job, I feel like giving up. I’m not a fun person to be around the relationship falls apart.

2011 I return back to Sydney and I’m admitted to Prince of Wales where I’m given a lidocaine infusion and a nerve block it works! I’m cured; I’ve finally found what I needed and I’m on the right medications. For the first time in 8 years I go 3 months without any pain whatsoever. I’m ecstatic and think of all the things I’m going to do with my new life. My family is thrilled, I even move back to my ex-partner to start things up again and find a job.

February 2012 – I’m driving with my partner and it hits. I can’t believe it, I thought they were gone. I’m too scared to tell anyone because I don’t want to disappoint them; I hide them for a month and then see a new GP. Bear in mind at this point I have been viewed by everyone (my family, my partner, my friends) as a drug seeker. My relapse in being pain free is viewed by everyone as a relapse back onto drugs. I go back to Sydney where I go downhill really fast.

July 2012, I’m back working and have given up on doctors. After 8 ½ years nothing has worked, I’ll just put up with the pain as best I can and begin taking Nurofen plus. I’m experiencing c/h’s 3x a day generally around the KIP 7 – 8 scale. It’s awful, debilitating.
I begin to lose all motivation to do anything at all. I sit at home unemployed chewing on Nurofen plus tablets. I contemplate suicide frequently, my friends are all graduating from university and beginning their careers. I’m genuine when I state no medication typically found effective for cluster headaches works for me.

I give it one last shot – I’m desperate, really desperate. I go and see a doctor I’ve never seen before and lay my cards out on the table. I’m honest about myself, who I am, my faults and where I want to be in life.

My new GP is around 30 years old. He is positive and most importantly he actually believes me when I tell him the suffering I go through. He doesn’t judge me; instead he sympathises and works with me to improve myself. I wouldn’t have made it this far without him.

He writes to my neurologist and explains the situation; I’m finally given the label:
- Chronic, treatment refractory cluster headaches.
This enables me to have access to medication which most people on this forum would claim “doesn’t work for cluster headaches”. For me, it’s the only thing which provides some degree of relief. It’s what enables me to work full-time and volunteer in my community on the weekends.

In 10 years I’ve gone from being a promising young student to a suicidal, drug addicted loner. Am I angry? Yes, I’m really pissed off. I’m pissed off at every doctor who dismissed me as a drug seeker, I’m pissed off at my ex-partner for not believing me when I said I couldn’t go to work / lunch / parties because I had a headache, I’m pissed off at my own family for not really understanding (not that I blame them).

I have a hell of a long way to go. But I know where I want to go in life. I know the person I want to become and for the first time in years I feel a sense of hope. I genuinely believe the future is bright. I’ve got a lot of work to put in, but I wake up each morning and do whatever it takes to go to sleep again that night knowing I’ve done myself justice.

Posted in Propranolol on 20 Feb, 2013 - 7:39 am

M.I.A. said:
This always happens to me when I begin to get out of a cycle, I get my brain back to myself after 3 months and start to realize how damaging this is to my life and studies( its taken me 5 years do far on a 3 year degree as I'm always having to make up for failures during cluster periods). I guess it might just be time to except that this is going to be a long term thing.."

You have just summarized the previous 5 years of my life in one paragraph.

Posted in just how far can you go on 13 Oct, 2011 - 10:37 pm

Thanks Matt. I appreciate you're thoughts.

Ben - Let me know if you find them, if you do - give me some!!! icon

Posted in just how far can you go on 09 Oct, 2011 - 10:39 pm

Well said Chris. Thanks mate! Nothing like being attacked at that hour with anything, especially an 8+. So, so glad Prednisone is working! Top drug that one is (when used as directed).

How long have you been suffering Chris?

Posted in just how far can you go on 09 Oct, 2011 - 8:45 pm

Now I've read it a 3rd time and I'm sure I've made a mistake! Haha what's this fungus thing?? I'm using an iPhone so I can't read and write simultaneously.

Posted in just how far can you go on 09 Oct, 2011 - 8:41 pm

Hi Dev,
Thanks for the support. I'm still in hospital (and if you've ever been in the neurology section of a hospital you quickly learn what neurology actually is, I didn't really find out myself until yesterday) and keen to get out. My Prof will no doubt send me packing, though he did refer to the fact that he's still not 100% happy with my med set up and I don't want to leave uncooked and without a solid blue print of the mansion I'm about to build (my life) that I can show to any doctor anywhere and say this is what I have, this is what I need. See ya.

Ben sorry buddy but I missed the part in your previous posts on modern medicine and fungal hunting. I'm assuming you live in a country that has an outright ban on certain pharmaceuticals? I could be way off, just guessing. Hope you're travelling well mate, pray you discover a miracle fungus that cures it. I'll help you file the patent in Australia, we can charge it at huge prices (all C/H Aust. Members are of course eligible for a free lifetime supply).

In all sincerity thank you again everyone. I really mean it, every member on here I feel I owe a debt too. It's just so reassuring that there are people out their who can not only completely sympathize but care for eachother as well. Prior to finding this site I was a member of various US ones and never really made a connection. Kind of feels like I've been given 50 good and genuine friends just as I needed them.

Does anybody know who owns this website? I'd love to make a contribution to the running costs etc.

Cheers everyone,

Alex

Posted in just how far can you go on 09 Oct, 2011 - 11:35 am

Thanks Ben, that's what I was alluding too. Credit where credit is due and in this case it's 100% to my 'team' of medical professionals with 'google' eliminated. Many times before I have spent months at the 'Google Public Hospital' and received no pain relief but frustration and addiction problems!

Posted in just how far can you go on 08 Oct, 2011 - 7:06 pm

I owe a hell of a lot to this website and it's members. Thank you!

Posted in just how far can you go on 08 Oct, 2011 - 6:50 pm

Everything you've stated I 100% support. My lidocaine was removed about two hours ago. I am free to move around the hospital now after being stuck for 6 days! I can't wipe the smile off my face, after 8 years - this is by far the best I have ever felt! Truthfully, I know it won't work forever, but right now it does and that's really all I care about! Right now!

Posted in just how far can you go on 08 Oct, 2011 - 1:52 pm

Hello everyone!
Thanks for responding, yes I've been on Lidocaine for well over 5 days now. I'd personally never heard of the drug so automatically dismissed it because I had the Internet and of course being 21 know much more than an Associate Professor in Neurology. icon

That's another big thing I need to do, actively listen to medical professionals who are involved in this condition. Of course, the Internet has it's uses to some degree such as educating an uninformed GP or for moral support but I, as I've already stated - I need to accept the advice of trained medical professionals rather than a quick search on the net!

Sara - I guess the reason I haven't asked for advice is again due to the fact I've learned, taken in and accepted so much in the past week. My mind is constantly remembering things I'm trying to take it all in. Thank you so much for your well wishes! I'm certainly enjoying my pain-free time. The post I wrote yesterday took me about an hour and a half to write and admittedly I wrote it for myself as much as I did for you guys. I will be hanging it on my wall the second I return home! Thank you again.

Heather - I'm so glad you found my post thearaputic! Yes to confirm Lydocaine IV Infusion for 5 days. I haven't had it before - any adverse reactions I should be aware of when they take me off it completely? I'm currently still at 15lpm waiting for it to be removed. My highest dose was 45lpm and an EEG was performed and signed off by the Dr. before it was increased. I'm also on a constant ECG machine and cannot leave the ward under any circumstances whilst I'm on it. They made it really clear at the beginning and even when I went to the bathroom I was questioned over turning off the ECG machine (it's not portable) I told him why (so the alarm didn't wake up the patient next to me) and he was still not happy! Sounds like serious stuff. As it's a local anaesthetic being pumped around my veins I'm assuming when it's taken off all those tiny bits of pain you don't realise you have will return. Sore legs etc.

I'll be back soon! Thanks for all the support!!!

Posted in just how far can you go on 07 Oct, 2011 - 10:33 pm

Hello Friends!
I am asking myself at the moment why I never made the call to go to hospital earlier. I guess it was school, work commitments, fear and until 12 months ago a strong addiction to opioids. But as I've stated - I'm here now and I've made good progress. I started with Lidnocaine Infusion at 15, 30 & 45 LPM over 6 days. I had a nerve block in the back of my ear which completely got rid of all pain, every little bit of it. I was amazed but warned it wouldn't last long. I'm still completely pain free, but I've finally realised this is how we have to live everyone. Unfortunately and as much as we'd love it to happen, the reality is that there will not be an immediate 'cure' for C/H's.

We have three things that we need to focus on. Firstly, stress - this incredible pain that almost made me throw my life away was my mind playing tricks on me. Pain is not harm! When we have a 10/10 C/H in our head nothing is actually happening physically that will 'harm' us. Although we feel like a knife is stabbing us from our eye to our temple, it's not. I found this to be some-what useful in my plan for dealing with chronic pain.

The second is medication, there is certainly room for ANY sort of medication albeit Panadol to - I won't state it but I'm sure most of you are aware. One huge lesson I've gained from being in Hospital is the way the nurses hand out medications ON THE HOUR we are due for it. It's never late or forgotten. How many times do we sleep in on Saturdays, forget our preventatives because we are currently pain free. Everything useful has a purpose. For me - my Prof. Is still deciding, but I can assure you I'll be taking it on the hour everyday, pain free or not. The same goes with abortives, keep a dose at your house, in the car & in your top drawer at your desk. Don't play around with whether it's a 'real' cluster headache or not. Just take it and RELAX. Better to take an hour or two sitting down at the computer with your eyes closed, going to the bathroom, sitting in the waiting room on Level G and doing nothing. Relax every part of your body that you can. Do what makes YOU stress free and let that abortive medication work. Whilst admittedly it's sometimes impossible, don't tense up by placing your hands exactly where the pain is and rocking backwards and forwards, letting you're mind focus soley on every bit of the pain - that's exactly what the demon wants you to do! One if the patients lying next to my watched me go through a 9/10 cluster, I used NO2 & the nurse gave me a very strong painkiller. All in all it took about 30 minutes for me to go through it. The man next to me said, "you know - I'd never even consider trading my condition for yours". He was a paraplegic who couldn't even go to the bathroom. That's how serious our condition is. Never let anyone downplay it in your mind! If someone says I get migraines like that, just walk away - there is NO point in trying to explain it to people other than immediate family and medical professions who specifically work in neurology.

The final thing I'm going to state is - Do Whatever It Takes. We are REAL people suffering from REAL CHRONIC pain. My team here in POW Hospital consist of a pain psychologist, an aneithiatist and a drug and alcohol team. At first my reaction was why do I need all these people? A packet and multiple scripts of XYZ is what I need. In just 6 days my attitude has completely changed. I'm 21 and spent over 6 months 'out of it' which I honestly cannot recall and a further 3 months in a rehabilitation clinic. That isn't a life anymore than being locked up in a room with 10/10's everyday.

I have a very small plan after 6 days:
- My anethiatest knows where exactly to inject a nerve block.
- I know that for MYSELF (everyone is different) NO2 does not work after using up the entire hospitals supply LOL.
- Cigarette smoking is an excellent trigger.
- At during the day and before I go to sleep I need to focus on being relaxed physically with my back, neck and mouth.
- There actually is room for a very controlled supply of a drug I swore I'd never take again, providing I take it as directed, let me say it one more time, as directed.
- Hospital is going to become a regular place for me. I can't say how often but I know what works and so do my team of Dr's. I imagine that I'll need to come here every 6 months to break a cycle - I'm chronic.
- I'm a sufferer of chronic debilitating pain. In all likelyhood I will remain like that for the rest of my life, but instead of whinging about it I'm going to play the cards I've been dealt - with a smile on my face! For every hour, every day that I don't suffer pain. I will be in a state of eurohria, I do accept however that those days will be limited.

Alexander - 6 days in Prince of Wales Hospital (Randwick, NSW).

Posted in just how far can you go on 03 Oct, 2011 - 11:17 am

Hello Fellow Friends!

I've just been admitted to Prince of Wales, haven't been seen by a doctor or my neurologist as of yet. So far no C/Hs! Maybe just being in a foreign place is the answer smile

Have a beautiful view of the Opera House & Harbour Bridge. Will keep you all updated as my treatment progresses.

Thanks again for the support.

Alex

Posted in just how far can you go on 30 Sep, 2011 - 3:12 am

Hi Shell

Thanks for the support! I actually have some Melatonin in my medicine cupboard (it belongs to my Mum but she never uses it). I'd never heard of it being used as a C/H treatment before so I'll take some earlier this morning when I'm ready to go to sleep.

At the moment my sleeping pattern is non-exsistant.

Thanks again!

Alex icon

Posted in just how far can you go on 28 Sep, 2011 - 5:19 pm

Hi Matt

I wish I could tell you more about what exactly I'm in for but to be honest although it was all explained to me in detail I was suffering from an 8/10 throughout the entire appointment and all I was focussing on was how quickly I could get all this done.

I received a call this morning from Prince of Wales Hospital advising me that I'm in as of Monday - how's that for speed! I rang my neurologist less than a fortnight ago and will be in hospital in 5 days.

Whilst I appreciate all the information I can get, I'm still in a huge cluster and wouldn't be able to digest it all at the moment. I'm on this forum whenever I get a break to again thank everyone for their support. I'll be bringing in my iPhone to the hospital and that'll enable me to give everyone a heads up (excuse the pun) on where I am at and how I'm feeling.

Thank you all for your support!

Alex icon

Posted in just how far can you go on 28 Sep, 2011 - 11:09 am

Hello Friends

Yes the reason I've been quiet is simply due to the amount and intensity of my clusters at the moment. I saw my neurologist yesterday for an emergency appointment and I'm currently on the priority waiting list for a nerve-block operation. My neurologist wants me to stay in hospital to see if that's effective and if not then he'll go for a more invasive procedure involving a nerve stimulator.

I didn't really get much more out of him as I was experiencing an 8/10 cluster as he was speaking - which he was genuinely sympathetic about. Unfortunately it became apparent that Imigran (my only lifesaver) was causing me life threatening side effects due to the amount of Effexor (anti-depressant) I am on. So that was withdrawn yesterday.

I've woken up this morning with a 9/10 which has now gone. Just waiting for the next one to hit.

I'll let you all know when I'm in hospital, I could be called today or in two weeks depending on bed availability.

Thank you for your support - all of it from everyone. Again, please excuse my lack of replies, I'm only on the computer when I'm feeling alright and then I have 50+ business emails to try and reply to.

I am most grateful for all the support and will keep you all updated as things happen. My cluster headache diary which is at public hasn't been updated, I'll do my best to get it up there asap.

Cheers and good health to all,

Alex

icon

Posted in oxygen availability on 27 Sep, 2011 - 9:43 pm

I absolutely agree with Heather. The flow rate really needs to be at the minimum 10LPM, preferably 15+. A facial mask isn't going to help either - you require a non-rebreather mask. They're often hard to find but I simply walked into the local hospital ER and told the triage nurse that I needed one (showed her my letter from my GP) and she gladly went behind the desk and simply handed me one out free of charge! I guess I was lucky icon

In the middle of a cluster headache I don't know how you'd be able to sit still in a forward position. I'd focus more on taking deep breaths.

With your non-rebreathable mask make sure you cut off the elastic which will ensure if you do happen to pass out (very rare) your mask will simply drop off and you'll be back to breathing normal air.

Of course, confirm this all with your treating neurologist or medical professional.

Posted in just how far can you go on 20 Sep, 2011 - 10:14 pm

Thank you for the support Daniel & Heather!

I can't wait for my appointment next Tuesday. Tomorrow is a new day - let's hope it's pain free for everyone.

Posted in oxygen availability on 20 Sep, 2011 - 1:45 pm

When I used Oxygen I also went through www.oxygensolutions.com.au and was able to void the delivery fee and refill fee because I lived 1km away from their headquarters and owned a ute.

In regards to "how much is too much" be aware of the following. The amount of Oxygen you're currently breathing in is around 21%, with 78% nitrogen and 1% Carbon Dioxide. When breathing through a non-rebreather mask from an O2 cylinder, you are breathing in 100% pure 02 which in itself can be potentially dangerous for extended periods of time.

Oxygen is also highly combustible (not flammable - there is a difference) and can sink into your bed sheets, clothes and everything else. It's highly recommended that when you do use O2 you have the windows open and don't think about lighting a cigarette.

It's proved a miracle for many sufferers, most GP's are quite liberal in writing a letter so good luck!

Posted in I'm going to get flamed over this but please try it! on 20 Sep, 2011 - 1:34 pm

Glad to hear it Heather. Like I said, who the hell would have thought an OTC medication could abort a cluster headache? I didn't believe it until number 2 or 3.

Unfortunately I'm well set into a cluster period at the moment. I still take it as it's the only thing available to me at present. It still drops 1 or 2 kip points if taken early enough!

I'm happy for you! icon

Posted in just how far can you go on 20 Sep, 2011 - 1:22 pm

Right now I'm suffering. All I can do is type. 6/10 at the moment - severe. 2 mins onset. Took my abortive meds. In the middle of a serious cluster headache bout (check my diary). I've had enough. I'm over it.

Last night I wrote:

"I simply give up:
There is no real future, noting to live for except loosing money, getting deeper into debt and living a life full of chronic pain that nobody close enough to me understands. The lowest of lows, 21 years old and my life is already laid out before me.
Depression, Chronic Exhaustive Pain, Lethargy and ultimately death.
Goodbye my dreams of the future."

Of course this morning I felt differently, but just how far can you go? I'm seeing my neurologist next week. I'm telling him straight up that he can do whatever he wants to do (brain surgery), put me on whatever drug he wants me to be on or simply diagnose me as treatment refractory. After 8 bloody years of this I'm so, so over it! I can't work. I can't live. I can't socialise. What's the point in getting up each morning?

My previous medication list:
i. Isoptin (960mg per day for three months – no effect on aborting headaches).
ii. Deseril (Prescribed by Dr. Ian Maxwell – no effect).
iii. Cafergot (Prescribed by Dr. Ian Maxwell – no effect).
iv. Lithium (Prescribed by GP – no effect).
v. Topamax (Given to me by a friend who suffers migraines – no effect).
vi. Prednisone (Prescribed by GP – no effect).
vii. Tegretol (Prescribed by GP – no effect).
viii. Maxalt (Prescribed by GP – no effect).
ix. Replax (Prescribed by GP – no effect).
x. Voltaren Rapid 50 (Prescribed by GP – little to no effect).
xi. Oxygen Therapy (High Flow 15 l.p.m with non-rebreather mask - no effect)
xii. Oxycontin (Highly Effective, Highly Addictive, Rapid Tolerance)

My current medication list:
-Effexor 300mg (Depression)
-Epilim 500mg twice per day (For relief of pain – not effective - Used as mood stabiliser)
-Naltrexone 50mg (Opioid Blocker)
-Xanax 2mg / 3 times per day (Working with GP to wean off all benzodiazepines)
-Valium 5mg / 3 times per day (Working with GP to wean off all benzodiazepines)
-Imigran Injection (Extremely expensive & contraindicated with Effexor – effective)
-Neurofen Zavance (The closest anybody will give me as a painkiller – effective for OTC)

Any advice from anyone? Headache is now down to 5/10. Going to have a coke, cigarette and get off this bloody computer.

Thanks

Alex

Posted in My Introduction on 20 Sep, 2011 - 12:58 pm

Welcome to the forum BreakingPoint

I'm relatively new and have personally found this website to be the best C/H support group so far. Especially considering it's based in Australia.

Mate if I were you I'd ask to be referred to a neurologist rather than continuing to see a chiropractor. Everybody's situation is different yet we all suffer the same horrific pain - you'll quickly find out there is no "one answer".

I'm in the middle of a severe cluster period at the moment. It began a few days ago and is now hitting hard. I made an appointment to see my neurologist and asked for an emergency appointment - he was able to squeeze me in on Tuesday at 11:00am. I'm at the point now where anything goes, anything is allowed, I simply do not care what they do to me as long as these headaches stop.

Check out the treatments listed on the left hand side of the page specifically "Medications" and "02 Therapy" none of them ever worked for me but anything is worth trying under your doctors advice.

Good luck,

Alex

Posted in I'm going to get flamed over this but please try it! on 18 Sep, 2011 - 11:44 am

Hi Heather,

I didn't know it was available in a gel capsule form - I'm please you were able to find it! I really hope it works.

Ben - I absolutely agree with everything you've said, specifically the part on the difficulties obtaining clinical information on unrestricted / exempt from scheduling medications. Please don't for a second under-estimate my knowledge of drug contraindications, unfortunately from personal experience.

Of course, this does NOT ever replace seeking proper medical advice. If in doubt - don't take it.

Off the top of my head one of the most dangerous drugs currently scheduled as an S3 (Pharmacist Advice Required) is Voltaren Rapid 25 (Diclofenac Potassium). The list of contraindications are huge and potentially life threatening.

The purpose of my original post was to simply imply something new to try - personally I've never had anything work under an S3 and Neurofen Zavance caught me by surprise.

Lesson learnt!

*This advice does not consider your individual health condition or current treatments. Please consult with your G.P or Specialist before attempting to mix or add new medications based on the advice of a public forum.

Posted in I'm going to get flamed over this but please try it! on 17 Sep, 2011 - 8:10 pm

Hi Heather

You won't find it in the gel capsules as they're already made to be dissolved in the stomach as quickly as possible and I don't believe that the active ingredient (sodium ibuprofen dihydrate) would be able to withstand enough time in a cap to maintain effectiveness and preservation over a period of time. God I know way too much about pharmaceuticals considering I have never studied chemistry in my life... kind of sad really when I educate doctors on what the medication being prescribed to me actually contains.

I've even had debates with pharmacists over medications - only to win icon

Posted in Untitled on 17 Sep, 2011 - 8:04 pm

I think if we were all to write to the Australian health minister outlining our concerns as suggested by Matt - it'd not only bring to the attention the condition to the Australian parliament but could result in a change of name. Brilliant idea mate, I'm in!

Posted in Anyone else's CH go to eleven? on 15 Sep, 2011 - 3:28 pm

Hey Ben

Before I start thank God you made it out of there OK. I hope your CT reveals nothing and your body is as tough as your mind.

I've been in similar situations (car accidents, seizures, dropping a piece of glass on my toe and watching the bone protrude through the skin) and have had the question asked many times by Paramedics, Nurses and Doctors. I always put myself in a "normal persons" position and simply self-determine my need for pain management.

For example when I broke my toe I thought to myself, "What would a normal person feel?" I gave the answer 8/10. In reality though, compared to a C/H it would be more a 3/10 at the most.

You can't compare the pain of a cluster headache to that of anything else in my opinion! So why bother? You know why they're asking (in order to determine a painkiller and/or dosage amount) so give them the answer that suits you at the time. After having a car dropping on you and nearly escaping death - you'd be crazy to try and rationalise your decision based on your C/H history. If it hurts - yell out 8 or 9, if it's bearable 5 and if you can't feel it - let them know.

Once again I hope your feeling better mate and rest up. Make sure your Brother buys you a case of beer as well (not during a C/H period though). icon

Alex

Posted in Untitled on 13 Sep, 2011 - 11:03 pm

I've absolutely suffered from exactly the same symptom to the point where it finally proved to my boss at the time that "no, I wasn't making it up and I didn't have a migraine" but my head was literally exploding! icon

Thank God I don't work for that bitch anymore. The company went into administration three months after I left.

Posted in Anyone else's CH go to eleven? on 13 Sep, 2011 - 10:55 pm

I have always personally used the KIP scale to describe my headaches and printed off a copy for my parents, friends and doctors but absolutely understand where Ben is coming from.

For me a Kip 8 in 2007 is certainly not a Kip 8 in 2011. I find the older I get - the worse my headaches become. In the middle of a major cluster I can almost swear that each consecutive headache is worse than what I've ever experienced before. The scale does not represent that. Whilst it's difficult - I try and maintain a log in which I have my GP sign off each week recording headache duration, pain level, what I was doing prior and what medication I used. A simple 1 day to a page diary should be adequate and in this way you can state after the headache just how bad it was in order for your medications to be changed.

As a narcotics user it's imperative I do this so that when the average pain level does decrease, so does the medication. In this way there is the potential to avoid serious withdrawal symptoms without sacrificing pain.

My log on this website is public for anyone to view - but my private log is generally a lot more descriptive.

Posted in I'm going to get flamed over this but please try it! on 13 Sep, 2011 - 10:39 pm

Thanks buddy, needless to say my Neurofen Zavance is generally gulped down with a can of coke or if I'm particularly lucky and it's in the house, Red-Bull. There is a high correlation between smoking and cluster headaches and for whatever reason the combination of the three (2x Neurofen Zavance + 1x Red Bull + 2x Cigarettes) is my number one abortive treatment at the present moment.

I really can't see it working for a full blown cluster (anything above 7/10) and you must act within the first 5 minutes but again today it worked for me.

I'm a chronic sufferer with the following stages, intensity levels and treatments.

Stage 1: C/H's exceeding 8/10 on an intra-daily basis. (Narcotics)
Stage 2: C/H's exceeding 5/10 on an intra-daily basis. (O2 & Imigran)
Stage 3: C/H's with varying pain levels 3-5 times a week. (Dependant upon pain)
Stage 4: C/H's with minimal pain levels 3-5 times a week. (The abortive method above)
Stage 5: No cluster headaches - Occurs when I'm under a general anaesthetic icon

*If you are not a smoker for God's sakes don't start - it's just unique to me!

Posted in I'm going to get flamed over this but please try it! on 13 Sep, 2011 - 1:18 am

Dear Fellow Sufferers

In my whole life I've only ever met one other person who suffers from cluster headaches. This goes to show how rare the condition is. I met him in an inpatient rehabilitation clinic whilst we were both going through withdrawal from narcotics after very lengthy and painful cluster periods. Of course, we keep in touch and check on one another now and then and about 2 months ago he had a cavity and was scheduled to see the dentist the following day. He went to the pharmacist who suggested Neurofen Zavance. Most Australian's have probably seen that ridiculous advertisement with the "activate zavance" button on a racing car but he swore that it was by far the most effective over the counter pain reliever he'd ever had.

This guy is a lot older than me (in his 60s) and we've both been through all the typical treatments for cluster headaches hence our meeting at a rehabilitation clinic. He then spoke to me a few weeks later and unfortunately the poor guy was in the middle of another cluster period - he still had half the packed of Neurofen Zavance and told me that if you take it within the first 2 - 5 minutes (like Oxygen) it significantly reduced his pain and the duration of the headache.

My first reaction was of course disbelief and that it must just be some sort of a coincidence (he isn't one to lie). I bought a packet at Coles in order to see what exactly was in it:

- Contains 256mg sodium ibuprofen dihydrate (equivalent to 200mg ibuprofen).

About 3 weeks later I felt the beginning of a cluster coming on and gave it ago. It worked, within 20 minutes the headache was aborted. Again I thought it was pure coincidence however I've been using it for about 2 weeks now and it has worked about 70 - 80 % of the time.

I'm quite familiar and interested in pharmaceuticals and I cannot understand what Reckitt Benckiser (pharmaceutical company) have done in order to modify ibuprofen but it is absolutely different to any other over the counter ibuprofen medication I've tried before.

It's non-addictive, doesn't contain wheat, gluten, preservatives, lactose or anything I'd consider dangerous. Buy a packet of 12 for $6.00 the next time you're doing your grocery shopping and give it a go.

Independent product reviews are here:
http://www.productreview.com.au/p/nurofen-zavance.html

Please note:
I realise that many people on this website would absolutely laugh at the thought of an over the counter medication even touching the walls of a cluster headache. I'm extremely well informed of what other medications are out there (view my profile) and this post is purely just something to try if you're battling and are running out of options. Being cheap and easy to buy makes it an easy medication to try and either tick it off your list of failed medications or find that it gives you enough relief to warrant carrying it around with you. What have you got to loose?

Posted in My Introduction on 13 Sep, 2011 - 12:46 am

Hi Matt

I know, the evil narcotics that pose such an immediate threat to our wellbeing in case we get "hooked" that they are very rarely - if ever, prescribed.

I've been on OxyContin - too be honest I was that hooked I was taking in excess of 200mg per day and after six months I was so tolerant I could still feel the headache behind it all. This proves 2 things:

1. Whilst they are extremely effective - they are a last resort and by no means get rid of the pain completely.

2. Your body becomes so tolerant to them that within 6 months you become physically dependant and go through 2-6 weeks of hell trying to get off them. I also found they can bring on rebound cluster headaches as well, though it's almost impossible to tell if your in a cluster or withdrawal.

I'm sorry you're suffering quite badly. I am too to be honest with you though I have had worse periods. I've been diagnosed as chronic so even when I'm out of a cluster period I still have on average 3 / 4 headaches each week which is where I am now. Usually they are quick to abort and rarely exceed a 7/10. When I'm in a full blown cluster you simply wouldn't want to know me - in fact you'll probably notice that I'll stop posting on boards such as this only to return in a few weeks / months time with more stories from hell.

I sympathise with you Matt. I for one know exactly what you're going through - especially having your wife leaving you for three weeks during withdrawal. I spent three months in an inpatient clinic in order to gain some sort of normality after a year long period of consistent, chronic 8/10 + headaches. This was just about a year ago now and I remember I was seeing my GP three or four times a week in tears (the receptionist had a special room for me to wait in so I didn't distract other patients). Unfortunately I've moved now so I have to start all over again - not to mention my addiction to Xanax and Valium which were used as replacements for OxyContin.

For work I'm a full-time foreign exchange and stock trader. My childhood dream was always to follow in my father's footsteps and become a Police Officer however that goal has been put aside as NSW Police don't really want Officer's kneeling over and smacking their heads on the bonnets of cars (that's my sarcasm coming out).

I'm lucky enough to have had a real interest in business and finance though and managed to complete a Diploma in Business Studies. I'm making more money now than I would as a Police Officer and because I work from home in front of a computer all day my bed, room of silence and medication are literally 30 seconds away.

You're allowed to rant as much as you want bud. This is what forums like this are for. It's genuinely so nice to know that there are other people out there who know what it's like. Not people telling me that their next door neighbour has migraines - but people who actually know the intensity of the pain. I think we can all agree that it cannot be exaggerated!

Providing you have an official diagnosis by a neurologist and an accompanying medical certificate I see no reason why you would not be eligible for the Disability Support Pension. There is more available on it here if you're interested:

http://www.centrelink.gov.au/internet/internet.nsf/payments/disabil
ity_support.htm

Unfortunately the current government is trying to restrict eligibility but at the end of the day you've paid taxes, I pay taxes and I don't doubt for a second that you are in need of financial support that the Government is there to provide you. Just be aware (and I know this from personal experience) that being on Centrelink payments is almost as time consuming and stressful as working itself. Once you've been approved though - you don't have to speak to them again for 2 years.

If you need any help relating to Centrelink send me a private message as I know the system quite well. During my year of hell I wasn't able to go on the DSP but it was very easy to claim Newstart Allowance as a "Job Seeker" and then simply provide a medical certificate stating you're unfit to complete your required activities to look for work.

Thankfully I'm in a good position at the moment (despite the headaches) and I am able to work which I thoroughly enjoy. There are of course moments in every CH's life where even getting out of the bedroom is impossible and I wouldn't for a second judge anyone for claiming their entitlements in that situation.

Keep calm Matt, relax, use whatever medication works for you and know that sooner or later (and I pray sooner) the cluster will end.

Good luck and keep in touch!

Alex icon

Posted in My Introduction on 09 Sep, 2011 - 9:23 pm

Hi Daniel

My only option for work was to:

- Claim the Australian Disability Support Pension (which I was eligible for).
- Start my own business.

I chose the latter as I couldn't stand sitting at home doing nothing all day. I am now in a position where I am my own boss and fortunately I earn enough to make ends meet as well as giving me some sort of satisfaction.

I worked between the ages of 16 - 20 in numerous roles of which none of my superiors understood why I had to take 2 hours off work. Whilst I did my best to explain to them the medical condition I suffered from - they didn't understand in the slightest. These were all government jobs by the way (secure and supposed to be supportive to those with medical conditions).

I know what it's like to be laughed at when you get hit with a C/H by a boss. One company I worked at involved working in a sales role within a call centre. My boss just couldn't understand why I exceeded sales targets and then 10 minutes later had my head resting on the keyboard and sweating profusely at my desk. Whilst she tried to be supportive - it looked terribly unprofessional and I resigned shortly after. 10 days of sick leave is pathetic when you are a chronic sufferer. I remember one day jumping in a taxi straight out of work and I was in so much pain I simply handed the taxi driver my licence with my address (I couldn't even talk). He thought I was drunk and threw me out of the cab.

I've only recently moved back to Sydney from living on the Gold Coast (interstate) and it's yet to be seen what my GP is willing to do to help me. Fortunately he has been treating me since I was 4 years old, but he is very conservative and our national medical administrator (Medicare) alerts doctors of prior "doctor shoppers" of which I freely admit I was one during one of the worst stages of my life.

I just hope that soon he'll understand, that my neurologist understands and that together we can come up with a solution that works. It may take years, but what other option do I have?

Overuse of medication for a cluster-headache sufferer is almost, if not inevitable. I also suffer from an extremely addictive personality which doesn't help. But like I have said over and over, at points it becomes quite literally a life or death situation which is why I am on the medication I am now to sedate me.

I feel for you Daniel. I'm sorry you're laughed at for taking a day off for a headache - believe it or not I really, genuinely understand what it's like. In addition, because of the short duration of the C/H itself you no doubt feel a sense of guilt or paranoia when it ends. It's so closely related to your sense of self worth that it's scary in a way.

Take comfort in the fact that mate, I know exactly what it's like - your bosses don't! Again, this is just something that the medical profession generally doesn't take into account. The actual cost of a C/H sufferer. It's not just excruciating pain - it's your job, your friends and family, social life etc.

Any sufferer would know the feeling of receiving an invitation to a party in the mail. You'd love to go, but can't RSVP because you simply don't know if it'd be physically possible to go or not.

I'm really grateful for this forum and everybody's support. Thank you for your sympathy - it does really help to know I'm not the only one and it's even more assuring to know I'm not being judged for my choice of how I deal with my headaches. On other websites as soon as I mention narcotics I'm inundated with warning messages and often barred. Again, it's pure ignorance. I wish that 500mg+ of Verapamil would work, I wish that Imigran or 02 would work, I wish that anything non-addictive would work - and I am willing to subject myself to any clinical trial!

I don't know if any of you are religious or not. I'm not generally except when I'm pleading to God to stop the pain. But may whoever created us give us a break exactly like Daniel said - even a day, a week, a month or preferably a lifetime.

Thank you again!

Alex. icon

Posted in My Introduction on 09 Sep, 2011 - 6:49 pm

Hi Peter, Dusker & Ben

I agree - there is no point arguing over who has the greatest "pain" or which treatment is the "best". Ultimately we are all individuals and unfortunately we are only meeting here because we suffer from what I believe is the worst pain imaginable known to human beings.

The cost of living with C/H's is immense: Pain, Self-Worth, Depression, Relationships, Careers, Time, Embarrassment, Frustration, Anger, Fear etc. I personally do not care what anyone thinks of my pain (with the exception of a physician treating me) or what I use to deal with it. I've given up on that a long time ago. I've also given up on trying to tell people what it's like. They just do not understand - if there is a place called "Hell" then I think I'd prefer to be there than where I am when I'm suffering.

I can appreciate your comments Ben - yes, I am fortunate that I have an official diagnosis at such a young age. Unfortunately, being 21 does come with it's downsides. I travel a lot due to my work and if you can imagine a 21 year old male walking into a doctors office complaining about cluster headaches - most write you off within the first 10 seconds as a drug addict or dealer. I want an official "Cluster Headache Sufferer Card", it should be a red card that I can carry enabling me to prove in an instant to anybody that my pain is the equivalent - if not worse than being continually stabbed in the eye through to the temple for up to 2 hours. Whenever I show this card, I should be given the same respect and entitlements that any other severe chronic pain sufferer has, albeit medication, time on their own or immediate help.

Unfortunately because I'm dependant on Xanax & Valium at the present moment (due to me being dependant on OxyContin which I'd do anything to get back on) my medication options are quite limited. Once I've maintained a decent period of abstinence my first port of call will be to go back to the neurologist who officially diagnosed me and wave the white flag. Oxygen, Imigran, Isoptin (and the other 30+ meds) which I've tried DO NOT WORK for ME. Yes, they may be of very great therapeutical benefit to some if not the majority of C/H sufferers but for me - they have no effect whatsoever.

My headaches are chronic and treatment refractory. The only thing which provides any degree of relief is narcotic based medications. Yes - they don't treat the cause, they mask the symptoms. Yes - they have an extremely high potential for addiction. Yes - they are not recommended for headache sufferers due to rebound headaches. Yes - withdrawal at the end of a cycle is terrible. I know all this from first hand experience. But in the middle of a cluster headache upwards of 7/10 I genuinely begin to question what's more important - the continuation of my life or getting rid of the pain.

As crude and insulting as this may sound, I often wish (even at 21) that cluster headaches were a terminal condition due to 2 factors:
- Treatment is available freely.
- There is a time limit set of which you have to suffer.

Call me whatever you'd like. But at the end of the day I would do anything and everything to avoid getting these headaches (and I think most C/H suffers would agree). It ruins all aspects of your life.

I'm sorry if my initial posts sound depressing. But at the moment I'm suffering big time and I can't say for a second that I'm happy with the way my life is going.

Thank you all for your kind words.

Alex.

Posted in Untitled on 06 Sep, 2011 - 8:41 pm

Hi Ben

I completely agree mate. I've suffered from migraines before, tension headaches, normal headaches etc. As I've said many times to GPs - give me 100 migraines before you give me 1 cluster headache! I only mentioned it because the term "headache" generally refers to the feeling a person gets after a stressful day at work. 2x Panadol and it's fixed within 20 minutes - lucky SOBs!

The term cluster-migraine wasn't even my invention rather it was coined by a friend of mine who also suffers from CH's. He only uses it because it tends to get more "attention" from medical professionals who don't know what a CH is. Please don't for a second think I don't realise the lack of information and understanding we get from those who are supposed to be there for us and support us. The fact that it's reffered to as a headache disgusts me.

When I was detoxing off narcotics (OxyContin 200mg+ a day) I was still contemplating what was worse. The headache or the withdrawal. I'd walk into my psych's office dripping with sweat, shaking like a fish out of water, goose bumps etc. All I could say was, "It's still nothing compared to a cluster".

Posted in Untitled on 06 Sep, 2011 - 4:45 pm

I personally refer to them as "cluster-migraines" in an attempt to emphasise to people who are unaware that they're not a headache.

Cluster Headache needs to be changed ASAP, I think something along the lines of:
"Extreme Life Threatening Chronic Disabling Pain In The Eye That Makes Me So Irritable When I Have One It's Not Even Worth Explaining Syndrome"

or "ELTCDPITETMMSIWIHOINEWE" Syndrome for short icon

Posted in My Introduction on 06 Sep, 2011 - 4:31 pm

Hello Everyone

Before I start my introduction I'd just like to say how great it is to have an Australian website set up without advertisements for such a rare condition. Thank you very much to the person who set this up - I'm sure he'll reveal himself / herself sooner or later.

My headaches began when I was in Primary School at around 12 years of age. I would come home at the end of school with a migraine every single day. It'd involve vomitting, not being able to do homework, not eating dinner and basically lasted until the morning when I felt fantastic again. Of course I'd have the occassional day without them, but generally speaking they were very consistant. I had an MRI done which revealed nothing and was given Panadeine Forte (being 12 I only needed 1 tablet).

Fast forward to when I was 15 and my headaches changed considerably. No longer were they migraines but something much, much worse. I had a job in a call centre after school and I just remember being in the most excruciating pain I'd ever felt in my life. I would leave work, jump on the train and by the time I got home (under 1 1/2 hours) I was only suffering from a shadow headache. This of course raised suspicion with my parents as to whether it really was "pain" or a "psychological issue" - something that I still have problem expressing to people to this very day.

At 16 I was referred to Prof. Alessandro Zagami - a very well respected neurologist in Sydney of whom I'm sure many board members would have heard of. He immediately put me on verapamil and continued abortive treatment with Panadeine Forte. Initially it worked, although the problem with cluster headaches is that you never really know if it's working or if you're just out of a cluster period. After a period of time the beast returned and to be honest years went by in my life where I was in absolute agony. I've been on every single medication available (there's no point listing them all here).

After regular appointments with Prof. Zagami and numerous trials of different medications I ended up "giving up". I was spending hours in doctors surgeries and of course when you are not in a cluster period generally speaking you tend to loose motivation to continue finding treatment.

I ended up moving to the Gold Coast after meeting my partner and saw a GP when another cluster period began. After telling him my story and verifying everything with my neurologist he prescribed on a very regular basis Panadeine Forte. Over a period of 12 months this quickely became ineffective and to cut a long story short I was put on OxyContin.

For 6 months I was fine. I then became completely dependant and addicted to OxyContin where I could not get out of bed without it each morning or go to sleep without it each night. It ruled my life and I was a true addict. I spent 3 months in a rehabilitation clinic and on my 21st birthday was discharged and haven't touched that stuff again (or any other narcotic). Unfortunately, in order to get me off OxyContin I was put on a cocktail of Xanax and Valium and cross-addiction soon occured.

At present my daily medication consists of:
5mg Xanax
15mg Valium
50mg Revia (An opiate / narcotic blocker to prevent "relapse")
500mg Epillum (To stop seizures and in an attempt to stop cluster headaches)
300mg Effexor (To battle constant depression due to chronic pain)

I am now living back down in Sydney and have one GP who is slowly weaning me off Xanax and Valium. Each day is difficult and hard, I'm currently in a cluster period and I just don't know what to do. If I could have it "my way" I would turn back time and remain on a sensible amount of OxyContin and wean off it when I wasn't in a cluster period. Nothing was more effective.

I do have a strategy in place which I've found works occasionally for aborting headaches if you catch them as soon as you feel one coming on. I'm a smoker so for those who don't smoke you can eliminate that part.
On first sign of attack:
2x Neurofan Zavance
2x Cigarettes
1x Can of Coke (or other energy drink)

That's the best I've got available for me at the moment. Hopefully I'll be able to check in soon with a reasonable medication schedule.

Please realise that I have tried everything. I've gone through a D-Size O2 Bottle in 3 weeks using a non-rebreather mask, I've been up to 800mg Verapamil in a day, I've tried numerous triptans including immigran, cafergot, maxsalt etc...

* Caution: 02 Is highly combustible and sinks into your clothes etc. Do not smoke when using 02.

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