Sign in

My Introduction

Home  >  Forums  >  General Chat  >  My Introduction

shrek_2226

(Member)
From: Wollongong
73 total posts
Currently suffering :(
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.
0 people like this

saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi Shrek and welcome to the forum. It's sad you have to be here, but i'm glad you found us. I do hope our usually friendly bunch gives you a better welcome than you've received so far.

That's quite a story you've got going there. We have another life long sufferer here in Ben, how you guys coped with childhood and CH has me in awe. As I think it best to avoid treatment p*ssing contests I won't put your list up against Bens, but suffice it to say between the pair of you there wouldn't have been much missed.

The cigarette part of your "abort an attack plan" is hysterical, but hey, whatever works. I quit nigh on 5 years ago and noticed an immediate decrease in attack intensity and duration, as well as other, non CH related, health improvements.

Good luck to you in your battle with yourself and your meds. I believe Ben also had similar experiences- fortunately I can't get a lot of that stuff here in Russia, so i've been spared that particular load.
Best Wishes to you,
Cheers peter.
0 people like this

Dusker

(Member)
From:
767 total posts
Currently suffering :(
Hi Shrek

Sorry, have been away for a few days and bit caught up with other stuff so have been a bit remiss in checking out what going on here.
You certainly have been in the grip of headaches for a long time; and of course the problem that goes along with them, the drugs and the reliance and the problems that goes along with them! You and Ben will certainly have a lot to talk about.
I am so pleased you have found "us"; a group of like minded people at times struggling with our demons, or monsters trying to get them under control so we can get back to some form of normal life.
I believe we have a good attitude here which is--let's get on with it, keep working to find what helps and supporting each other even if only through the forum and some private messages of support.
I can see that you "tried everything" and that you are currently working with a GP. Have you looked into working with a pain management clinic within a public hospital? Ben here in SA is working with a Prof Rolan who has been helpful. I only mention this as as far as I can see you have not mentioned this as having tried it!
Great having you join us
Cheers
Heather
ps--I am one of the lucky ones--last year was hell, currently coming up to 12 months' remission, with fingers and toes all crossed!
0 people like this

Ben

(Member)
From:
327 total posts
Currently suffering :(
Amen StPeter!
It is very difficult to outline the exhaustive treatment processes without it coming out like a p*ssing contest. The lists are so long, it does look ridiculous, I know. When I initially arrived on the site, I very ignorantly presumed that I had a monopoly on CH pain experience. Pre-internet, most Doctors had reiterated this position to me, basically on the premis of the rarity of the condition. How wrong I was. Probably a product of 30 years of pristine isolation and misdiagnosis. I had never met another person who had heard of the term CH, let alone experienced one!

In my lifetime, I too have only come across 1 ex-sufferer, a dentist who experienced CH from ages 12-16, then they just stopped.
Lucky person he is!

When I read about Shrek having an MRI at age 12, I thought "You lucky bastard!".
I had to look back and see when Shrek was born, I could hardly believe it!
In 1988 at age 12, I too was given my first box of Panadeine forte for "Migraine".
Closely followed by "Lingraine" (anyone remember that one?)
But I don't think MRI was invented yet, or at least not widely used or available.
They did X-rays for CH - what a joke!
But we did rule out tumors and aneurisms etc...

Contests aside, the comparisons in our stories are very similar with the exception that Shrek was "Lucky" enough to be born in an age where people had heard of CH.
(Yeah, I know - I am calling a CHer lucky...)
He doesn't have to spend 15-20 years crawling the walls undiagnosed and unmedicated whilst seeking diagnosis and treatment. At least he knows its CH! (Sorry Shrek mate, I know this does not make your situation or CH attacks one bit easier to handle) From where I sit, having this diagnosis at an early age is a huge plus for your treatment options and psychological state. I wish I knew about my condition at that age.

This shows that CH diagnosis and treatment have improved dramatically from one generation to the next. This is about the rate of change that we can expect if we are to rename the condition - generational change.

There is the proof over the last 20 years that CH research is still going on and that hopes can be held onto for a CH cure. Lets hope the next 20 years go a bit better!

Cheers, Ben.
0 people like this

shrek_2226

(Member)
From: Wollongong
73 total posts
Currently suffering :(
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.
0 people like this

dev1980

(Member)
From: Northcote, Melbourne
59 total posts
Not currently suffering :D
Hey Alex

Your story is terrible, I cant imagine what its like for all the chronic sufferers out there. Its Sad to say but during a cycle i totally agree that it would be easier to overuse meds with risk off addiction than it is to suffer the pain.

And how nice it would be to have that card to give to new GP's. Not needing to explain the story over and over again. but im sure any good neurologists would surely give you a letter to carry around. my neuro gave me a letter to hand to hospitals so i didnt have to explai what i was suffering from and also to get oxygen from any gas company. i must ask for the same letter to give to a new GP if i ever move.

I too was a sufferer of migraines as a child but then no headaches until late high school and i was never diagnosed as CH until 21 so those few years i was told i had migraines again.

how do you cope while travelling with work? I work in a industry where im basically laughed at if i have a day off for headache. luckily mine are at night and afternoon otherwise id be with the other who lose their job due to this condition.

How horrible this condition has been to us.

I hope you soon find pain free days, weeks, months, years. lifetime.

Daniel
0 people like this

shrek_2226

(Member)
From: Wollongong
73 total posts
Currently suffering :(
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
0 people like this

Silent Planet

(Member)
From: Freshwater
261 total posts
Currently suffering :(
Hi Alex and Everyone Else,

Sorry to hear that you have found this web site, but in saying that welcome to our every increasing family. I too suffered from the age of 8 now 44, i was not diagnosed until my mid to late 20's so i also went through school being taunted by teachers who didn't understand what i, we suffered from and what the pain was actually like.

I too have also tried everything that is opn the market for CH and anything that might also be able to give some relief even though it was used for some other condition. I rely on the narcotics to try and get some pain free time using 50 - 80mg Endone and 15 - 30mg morphine and yes as we all know narcotics are not the way to go due to the face that they are so addictive. I have also been on oxycontin 100mg p/d but found that when i trird to stop it i couldn't as i was so hooked on it. I eventually went cold Turkey ans suffered through the withdrawal badly, i try not to go back onto it due to the fact i can't get off it. With the Endone and thwe Morphine i can stop that straight away and have very little withdrawal. They even tried me on Methodone at one stage and man i never want to go therer again. i fell aslleep over the sink full of water while doing the dishes one night. My wife left me for about 3 weeks while i was on it as i couldn't function and was a danger to the family, i even dropped my baby daughter while on it. i dont now how Heroin addicts can live on that stuff.

At the moment i am suffering quite badly so i start to go on these little rants. ou said that you work for yourself what do you do, i used to work for myself doing gardening, handyman jobs, painting, cleaning and lawn mowing until the pain got to much and had to sell the business recently. I have just applied for a disability pension dur to the fact that i have been off work for the last 6 months and will be off for atleast 6 - 12 months until i can get in to have my 3rd lot of surgery putting an nerve stimulator implant in. See "Topic post on Lyrica" under medication to see about the implant very long story. ben is next on the list to try and have it done.

Sorry Ranting Now.

Good Luck, Dont Let Anyone Put You Down Because You Have A Rare Condition.

Matt
0 people like this

shrek_2226

(Member)
From: Wollongong
73 total posts
Currently suffering :(
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
0 people like this

breakingpoint

(Member)
From: Echuca
90 total posts
Not currently suffering :D
Hi all my name is Chris and I live in Echuca on the banks of the mighty Murray River.
As I write this I am "coming down" from a 1.5 hour 8/10. My fourth for the day (if you start the day with my 1.00am to 2.30am sleep depriver)
A little bit about me and my CH.
I got my first CH when I was 22 and for the first 8 years I never had a remission, and in that time I was having 2-3 CHs a day.
I found it impossible to get anyone to understand what I was going through, a situation that I'm sure most in here are well aware of.
I finally got some relief from my chiropractor who was treating me for a back problem one day and I had a severe CH, and he asked what was wrong. I told him and he told me that he may be able to help and worked on my neck for a while and then did some rather viscious manipulation.
Amazingly, I had my first CH free night for more than 3 years that night.
Over a period of time I have been treated by several different chiropractors and most have been able (eventually) to achieve a degree of remission for varying lengths of time.
CHs have only returned to my life in the last 3-4 weeks after not suffering for about 3 years.
I have also been taking ENDEP otherwise known as amitriptyline... an anti depressant that was prescribed to me in low doses for pain management during my last bout of CHs 3 years ago. I have not noticed any reference to this drug on any of my web browsing into CHs ..... Has anyone else used this???
Since the first chiropractor induced remission I have have had 6 seriously nasty returns to daily CHs, but they have always been controlled within about 3-6 months, and have been followed by remissions of varying lengths.
That is enough for now, other than to say that I wish I had looked on the internet a long time ago, and found this and other sites.
To be able to communicate with others who can relate on all levels to the cruelty of this parasitic affliction can only be beneficial.
Chris
0 people like this

Ben

(Member)
From:
327 total posts
Currently suffering :(
Breakingpoint,
Welcome. Oh how I wish it was a parasitic condition!
Then we could all go to a tropical disease clinic and have the bastards removed!

Yep, done Endep and the rest of the "tryptylines" - all the cousins of Endep. It did jack for CH or my depression. Neither did the other 20 odd anti-depressants I was prescribed. As it was explained to me at the time, the use of anti-depressant medication in CH was "off-label" or "experimental" (Basically when a drug is being used to treat any condition other than it was originally marketed/approved for use).
I think the general idea is to alter ones perception of pain by using anti-depressant medication to give our psyche a break from the CH hammering. It can provide minor and temporary relief.

Endep was prescribed to me in an attempt to help with pain management. Endep, in my opinion is a specialist's best guess at solving CH straight out of "The A-Z of Neurology" manual. I grew tired of refusing yet more boxes of the stuff. If anyone implies or has experience that shows CH will cease outright after using endep - please point me in the direction of the clinical trials, I want to see this... I think Endep is useless, anyone else?

Careful of getting on this Anti-depressant merry-go-round mate, it can go on forever. Especially if you are not depressed, I wasn't. I just had CH. Then all this happened. I have done over 60 drug trials in 30 years of CH. A large number of those trials were Neuros stuffing about theorising over the use of anti-depressant medication to treat CH outright. Guinea-pig stuff. They can offer no proof statistically or otherwise that anti-depressants will help manage CH, except psychologically. Personally for me, the bottom line is - Anti-depressants have their place in CH treatment. If you are clinically depressed or feeling depressed by CH and the lifestyle it inflicts upon you, I would recommend talking over anti-depressant use with your doctor/specialist. I realise that CH is a major downer and a lot of CHers will need anti-depressant medication to get them through, as I have done. I note that depression is a condition in its own right and co-exists (Unsurprisingly) quite frequently in CH patients.

Although the frontline CH medications and their modes of action are relatively well understood in the clinical sense, I have my doubts about the use of anti-depressants in CH treatment, other than for treating underlying depression itself. Science understands these medications a lot better than it understands CH. My specialist and I have found SSRIs, SNRIs, MAOIs, TCAs etc. to be counterproductive for my CH treatment. After all, we are trying to attenuate a complex series of Neurotransmitters, this is not well understood. We ended up "chasing my tail" through a myriad of side-effects, contraindications and tolerance issues. It is a complex balancing act at the best of times and always comes back to the risk/benefit analysis.
Any prescribing Doctor should assess the potential risks against the benefits in his/her patient. There is such a thing as "Harm by prescription pad", a thing most GPs will do at some point in their careers. Anyone being prescribed anti-depressant medication for CH should sit down and talk with their GP/specialist about the risks/benefits of any new medication. In my case the side-effect burden, coupled with the total inefficacy of anti-depressant drugs has seen them withdrawn permanently. I have not felt better in years.

I speculate that any "Mode of action" or "effect" that an anti-depressant can have on a CH can backfire spectacularly. If a Neuro explains that a drug constricts veins and that will "sort out" the CH, they forget the rubber band effect - What happens as the drug wears off? What happens as we build up resistance and escalate dosages? We start to get dehydrated, constipated, sleeplessness, headaches etc etc. Then there's the rebound CH attacks to consider.
From medication or not? Nobody can say for sure without withdrawing said medication, leaving you with CH, depression and a brand new withdrawal/discontinuation syndrome to deal with! Too many variables come into play. A hard way to "nail down" just exactly what drug is effective for you I suggest?
All these side-effects play havoc with other medications that actually might work!

When all is said and done, I am 5 years out from beginning work with my current specialist and I have had many problems with drug tolerance and efficacy:

High liver counts
Cysts on my Kidney
Fibrilation and near death (Topiramate, Sodium Valproate, Dothiepin, panic attack interaction)
A stomach ulcer (Thanks Prednisolone)
Chicken pox (Thanks Prednisolone)
Permanent Heart Arrhythmia (Thanks to the moron Neuros who prescribe huge doses of Verapamil without adequate ECG, your turn will come Mr Neuro...)
Depression (after 60 trials wouldn't you be?)
Anxiety.
Serotonin syndrome.
Benzodiazepine withdrawal.
Hypothalamus disorders (sleep time, body temp, issues)

I was really depressed too and had many, many anti-depressants due to lack of correct CH diagnosis and treatment. Once I found my current specialist and a pain management team, they introduced me to CH abortives yay! - Imigran Tablets, Nasal spray, injections), Cafergot, Ergotamine, Oxygen treatment etc. There are more widely used preventives available for CH, with clinical data to back their efficacy in CH. Lithium, Verapamil (and other Calcium channel blockers), Anti-convulsant (epilepsy) medication. Once I had correct diagnosis and treatment, guess what? I am not depressed anymore.

I have been 3 months plus without anti-depressant medication (Dothiepin, a TCA)
I have gone over a week off Xanax (for anxiety)
I have been left on Nexium (a reflux drug) to treat my stomach ulcer
I have been left on Maxalon (A nausea medication) for stomach ulcer too.
Still taking Atenolol for heart rhythm issues.
I have Soluble Aspirin 900mg, Imigran FDT 50mg tablets and Imigran MK2 Injections.
With this lot I manage up to 6-7 attacks per 24 hours for 9-10 months of the year.

I am not looking back.
For me, things could not be better.
I am on less drugs than I have been in a decade and you know what, 4 weeks of no CH and counting...
I am not tempting fate and "Going Green", superstitious I guess...

Anyone feeling depressed should check out the home page on this site. There are phone numbers there from SANE and LIFELINE for people who need to discuss or are concerned about their depression.

Cheers, Ben.This post was edited on 20/09/2011 at 8:51 am
0 people like this

Dusker

(Member)
From:
767 total posts
Currently suffering :(
Hi and welcome Chris
First to answer your question re Endep--yes. Is part of my medication regime. Does it work or more to the point has it been working up to now. Who is to really know. Have been in remission for nearly 12 months--started on Endep in an endeavour to wean off of Topomax. All a bit of a mute point for me at the moment as I think I am in a little trouble as we speak. BUT lets talk about you.
Know Echuca well--lovely area. Have some friends at Tocumwal so pass through general area. Being from SA unfortunately our poor old Murray doesn't look quite so mighty at times, though at the moment is looking a little better than it has.
I did cringe a little when you told your story about the chiropractor only because I had a bad run in with a chiro many years ago which resulted in neurosurgery so I sort of stay well clear of them! You obviously got some relief. There are others who would agree with you. There may be something in the becoming too stiff and generally tense, muscles cramping or whatever. Will leave that to the experts to work on.
I do know that when I started to do relaxation exercises and used breathing techniques I was able to handle my attacks and the pain far better.
You have not said how you are/if you are taking any medication now, or seeing any Dr now. I hope you have had a chance to read up on the all the good information available on the links on the left.
One thing to keep in mind, none of us are medicos here, all just CH's dudes who have just like you been pulled through the mill and tried a lot of different things. Some work for some, others work for others.
Great having you on board.
Cheers
Heather
0 people like this

shrek_2226

(Member)
From: Wollongong
73 total posts
Currently suffering :(
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
0 people like this

breakingpoint

(Member)
From: Echuca
90 total posts
Not currently suffering :D
Hi Ben Heather and Alex and thanks for the welcome.
I was first diagnosed by a neurologist when I was 25 in 1992, I had been suffering almost evrey day (2-3 per day) since not long after my 22nd birthday.
Incidently my CHs started about 2 weeks after I had a serious concusion during a football practice match. I injured my neck in the same incident.
I went 8 years from 22 to 30 without having any form of remmission and in this time i tried several different drugs with varying lengths of relief but none ever withstood the test of time with there efects diminishing in time.
As I wrote before a chiropractor adjusted me and after his first session I was CH free for about 6 weeks, and when they returned they came back slowly with very mild pain initially. They then returned to normal and I returned to the Chiro.
This was in 1998. Since then I have had about 10 CH free years and the other 3 years have been with CHs tortuing me several times a day .... Something most in here understand only too well.
I have spent a lot of time cursing this affliction but don't believe that I have ever reached a stage where I would consider that I was suffering from depression which I am thankful for, but at the same time suicidal thoughts(I'm sure this will be understood) have flowed at times at the height of a 10/10. Fortunately I have never seriously considerd this an option or a path that I would take
I have been on ENDEP for about 6 years but do not use it all the time and at the time that I was first prescribed ENDEP I was also under the care of a chiropractor who had worked on me before.
To this day I have no idea weather the ENDEP is actually doing anything but I think mentally it is some form of comfort.
Last night I had a session with the Chiro (same one) and came home and had a massive headache that was over by 8.30pm which often happens after a session with the chiro, but I have not had one since and I actually got a full nights sleep for the first time in a month.... not that big a deal really but i have felt a lot better today.
I don't think i have been "fixed" yet but I'm hopeful!!!!
This bit may sound a bit silly and incredibly selfish but I'm so glad I am able to speak to people that actually understand how incredibly debilitating these headaches can be.
I wish I had gone looking online a long time ago.

Cheers
Chris
0 people like this

Henry

(Member)
From: Sydney
4 total posts
Currently suffering :(
Hi All,

It has probably been 2-3 years since i have been on the site.
Great to read and relate again.Thanks for sharing

I am a chronic sufferer was finally diagnosed by a neurologist in Sydney about 5 years ago with chronic migranus neuralga (if you look for the definition of that it just means cluster headaches)It was a great revelation for me when i finally was diagnosed! it answered many questions
My variety has been afflicting me for as far back as i remember probably aged 8 when i used to drink soft-drinks in the sun, would trigger and go all day or night,never was given anything stronger than a panadol and the headache would mostly last for 8-12 hours with vomiting attached
The symptoms have never changed for 44 plus years usually 2-3 headaches a week ( sometimes i will get an off week) and behind my right eye in the same spot feels like a skewer is being poked in and out.And i become and absolute ares-hole to be around,totally intolerant and if pushed ave been abusive.I don't like myself when i have a headache (and would do anything not to have one),my wife and i have learn t to stay away from each other when i am suffering.
And today when my kids are really screaming i often go elsewhere for an hour(if i can).

When i turned 24 i found opiates( heroin) and thought i had found heven from hell,
I was a binge user and if i had a shot it would generally keep my headaches well at bay,instant relif for 36 plus hours.This behavior lasted for 10+ years
But the consequences were great,as at times got a habit for maybe a month or two and i ended up in and out of detoxes ,the headaches in the detoxes like i had never seen(they were scary and at this time i still was in the dark about what my condition was.I thought everyone who said they had a headache went through this and i was just a wimp)
I finally started getting clean when i was 36 and of course was all mixed up about my reasons for using,My A.A sponsor told me i was different and i had the disease of Addiction and need to stay clean one day at a time(good advice,and sobriety does work, but wont help me if i get a serious cluster headache,perhaps i was an addict but was i born like that?,perhaps we all are able to be if push comes to shove, who knows?.. but my main concern at the time was to dull my headache,and my headache had nothing to do with my dysfunctional family,anyway that is all another story i don't buy into much today just get on with life
But i did battle on like this for years,sometimes relapsing,going to hundred of meetings believing god would finally solve my headaches and my desire to shut them down.
Once clean I thought it may be cigarettes that gave me the headaches(no doubt a good trigger when in my cycle) but once I gave them up i still suffered,i thought it was maybe chocolate(another good trigger for me),gave that up and still suffered,then i thought it was my sinuses and had a doctor suggest i have surgery to have them surgically removed which i did, with the hope this would solve this problem,What a let down it was the day after the surgery i got a massive cluster.it seem everyone occasionally had headaches and i was just a wimp about mine.
finally i was sent to a leading neurosurgeon who told me my condition,and one of the first things he asked me was "have you used opiates to solve you problem in the past" I thought ah ah mmm. now i was seeing the bigger picture
So the fact i came from a dysfunctional family and all the other things you learn in 12step fellowships defiantly had merit for me,but unfortunately the AA journey could not give me the facts about my headache condition.
So first it was imigram, tamedol,theni was on Deseril (oooh heavy) then Lithium carbonate
Nothing was working again,and i was getting serious headaches
so i had to find a solution quick,i used t go to emergencey and they would give me panadine forte and this would not fix but dull.
Back to the opiates again,i thought oh dear
But for the past 3 years if i get a serious enough cluster which is twice a week i take 2-3 panedine forte ( a great alternative to heroin considering i can have it in the cupboard on hand) ihave only ever taken the panedine forte when i have cluster headaches, and never abused them.Horrible things really
I havent drunk alcohol, smoked cigarettes,or used heroin for years and it never really enters my mind.
I probably take 4-5 Pandene forte per week. I dont worry about my headaches any more as they are permanently in the cupboard if i need them
This is far from a perfect world,but really great to there for my family and for myself,it is a compromise, i have made as this is all i can see that works for me
it took me a long time to find a doctor who would prescribe me more than ten at a time with my history of heroin abuse
So that is my story and i rattle along and like most don't even try to explain to people about my cluster condition.
My employee can sense a headache in me sometimes before i do, as my eye will droop and he can sense the change and he will suggest that i take some panedine forte which i really hate now, as they make me feel like shit and makes me constipated ,But it dulls my headache to make my life tolerable for me and especially those around me
The doctor prescribed and I tried taking pure codeine once but does not do the trick

Anyway thanks for listening Look forward to reading your stories

Regards
Henry
0 people like this

Dusker

(Member)
From:
767 total posts
Currently suffering :(
Hello Henry and welcome.
When I read some one's life history as yours I can not refer to it as as a story!
The difficulty of diagnosis of condition and subsequent treatment and the depths of despair with addiction of any substance--to be able to manage one self through out this and to then go on and cope with family and a job is to be acknowledged as inspiring. I hope that you have been able to take some information from our side bar as possibilities to try. Oxygen has been of tremendous to help to many of our members and can be organised to be used at home.
Thank you for sharing your history with us, I am sure it will help others here on the forum.
Best wishes
Heather
0 people like this

Please sign in to leave replies

An ad to help cover the costs of keeping this site up: