Second Opinion

28 Feb, 2012 - 3:23 pm

Hi all, I've been debating about joining this site for a while now, and today's episode has made the decision for me.

I have been getting terrible headaches for a while now, the furthest back I can remember the chronic pain is prior to my HSC. I remember waking with agonising pain, always on the left side (even now). I remember the pain lasting on and off for weeks, only attaining relief during winter and mid-summer. I remember feeling like hell, and never thought twice about it. I suppose I got so used to it I just assumed it was a part of life that most people go through.

It takes a lot for me to take pain killers of any kind; but when one of these headaches hits, nothing will help (off prescription, anyway). I have gone through ibuprofen, paracetamol, codeine, dissolvable aspirin, reaching 900mg of aspirin without even denting the pain.

There have been several occurrences in the last year where I have seriously considered driving myself to the hospital, when the pain has peaked. It has made me wonder on several occasions if unconsciousness (or worse) is the only way to stop the pain.

It has only been in the last six months that I finally reached the last straw, now in my second year of a demanding University course, I forced my way into an after hours doctor just to try and find some relief. The doctor determined it was nothing more than a migraine, and injected me with sumitriptan. THAT helped, albeit it made me fairly loopy.

Following the trip to the emergency doctor, I revisited my GP and explained the severe, sudden pain that feels like a screwdriver covered with acid is being shoved into my eye, flowing down into my teeth and jaw, that occurs early morning/on waking, on one side behind my eye, that will not respond to any over the counter medicines, that can last for hours with only brief minutes of relief, that always occur spring and autumn, like clockwork, and the random runny nose that will occur out of no where and disappear just as quickly as it appeared.

The diagnosis I received was: migraine. I disagree with this. Migraine sufferers respond to codeine, to triptans. Migraine sufferers can sleep the pain away, experience nausea, light and sound sensitivity. Migraine sufferers can predict their headaches with auras. I can only predict mine through "twinges" or "shadows"- painless, uncomfortable pinches throughout the left side of my head.

I wish I could sleep, but unfortunately that just aggravates the headache, as does any bending or laying down motion.

I have asked my doctor why she thinks it's migraine, not cluster headaches, that I suffer from. She said that I should have brief, noticeable absences of pain- hours pain-free and seconds/minutes of pain- not hours. And the headache would more likely jump to the other side during a cluster attack. Plus statistics- I am female. I mentioned the rhythmic appearance of the headaches, the sharp pain behind my eye, the absence of classic migraine diagnostic criteria. She still sways to migraine.

I am not a Doctor (yet), but I feel she could be mistaken. I can't convey how excruciating the pain is, words barely do it justice. I have resigned to keeping a headache diary, and resigned to the idea that I may have to wait years for the evidence to become more revealing.

Presently, I am on a dosage of 1.5mg pizotifen taken before bed, and 2.5mg zolmitriptan (which I find useless) for the headaches.

I was previously on verapamil 160mg SR as a preventative, I had mixed results. I stopped this very recently (8/2/12) and have had another 2-3 major attacks since (after one of the attacks, during a pain free period, I took eletriptan which seemed to prevent any reoccurrence that day).

I had about a month (give or take) without any major (cluster type) headaches prior to stopping the verapamil. A few tension headaches from dealing with Insurance companies, but no excruciating ones.

I am under a lot of chronic stress, and my doctor has attributed these headaches to my subconscious suffering (consciously I deal with it via SSRI use).

I wanted to share my story in the hopes of receiving some feedback, some insight into these horrible headaches. I really am sick of writing off an entire day from the shadow that lurks on waking. I do not believe these are migraines (I have never felt anything so painful), but I would like to hear what other people and other sufferers make of this.

I have considered getting a second opinion from another doctor, but most around my location have closed their books

- REDThis post was edited on 28/02/2012 at 3:25 pm

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28 Feb, 2012 - 3:24 pm

P.s. The eletriptan was given to me by the doctor just after the attack had occurred, so it's not a regular medication.This post was edited on 28/02/2012 at 3:26 pm

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28 Feb, 2012 - 7:52 pm

Hi Red

Welcome to the site - but sorry you had to come looking.

It seems to me you have done the research and developed a sound understanding of some of the characteristics of cluster headache and the difference between cluster headache and migraine - that's a great starting point.

From the info you provide I agree you either need a second opinion from a GP and a referral to a neurologist. You know all this though; your challenge is to get yourself in the right mindset to deal with the situation without causing yourself anymore grief.

As you're no doubt aware, there's heaps of info available on this site. Maybe print some out to have with you when you next see a health professional.

Here's a link to an excellent book that can be downloaded (thanks Ben) - for some reason the link will need to be copied and pasted into yr browser.

http://tinyurl.com/8xcfctm


Good luck with your search for answers, and please remember we're always here if you need to vent

Cheers
SaraThis post was edited on 03/03/2012 at 10:18 am

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28 Feb, 2012 - 9:57 pm

Hi Red,

Sorry that you have to be here, as Sara said read all the info you can and even take some of it with you when you next see your G.P. You might want to ask and see if they will give you a letter for you to get some O2 and give that a try. If you do get a letter it needs to say that you suffer with Cluster headaches and need a flow rate of 10 - 15 Ltr/Per Min.

You might want to check out your local hospital and see if they have a Pain Management Clinic there, if they do get your G.P to call and make an appointment for you while you are there as you can usually get in a bit quicker if your G.P calls and does it for you, same with a referal to see a Neurologist.

There are so many different types of Preventative and Abortive meds on the market. Please don't be affraid to ask questions as we won't bite but are here to help you in any way we can. Please remember that we are not Dr's and only offer this info from our own experiences and that before you try anything always consult with your G.P or specialist.

Good luck with all your research on this site.

Matt
Silent Planet

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29 Feb, 2012 - 5:05 pm

grannysa said:
"It seems to me you have done the research and developed a sound understanding of some of the characteristics of cluster headache and the difference between cluster headache and migraine.

From the info you provide I agree you either need a second opinion from a GP and a referral to a neurologist. "

Sure have! And completely by accident too. I put my symptoms into webMD (bad idea I know, but I was curious), and it churned out CH as most likely, followed by migraine. I read symptoms of both, and CH seems to fit best- except the middle of the night attacks and short duration- I wake up with them and they can last for hours at a time, with short breaks in pain, and that cycle can go from anywhere from under 8hr to 2 days, upon waking.



EDIT: I just wrote like a page and for some reason only 1/4 of it posted ;( didn't copy it either. Not going to rewrite it tonight, This post was edited on 29/02/2012 at 5:09 pm

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02 Mar, 2012 - 9:01 pm

Hi Red
Hope by now that you have been able to follow up with appointment with GP etc.
As you have discovered there is a wealth of information here, plus a lot of people who have been round the traps awhile when it comes to CHs!
Right diagnosis and treatment--just as for any illness.
Know your medications, side effects and how they effect you and report back to your doctor. Work with your doctor and have a plan for your treatment. Dont forget oxygen and giving a good trial. I am amazed at the number of people who DO NOT give this a try. It is one of the first line medical treatments and often used for diagnosis.
You sound very switched on--stay that way. It can be a tough road you are on. Medications that work for some, may not work for you and vice versa.
Let us know how you are travelling.
Cheers
Heather

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07 Mar, 2012 - 12:50 pm

grannysa said:
"It seems to me you have done the research and developed a sound understanding of some of the characteristics of cluster headache and the difference between cluster headache and migraine

From the info you provide I agree you either need a second opinion from a GP and a referral to a neurologist."

There is certainly not much, from what I have read, about migraines that fits my circumstances, except for pain, gender and (rarely) sound sensitivity.

I have been unfortunate enough in my short life to experience three different types of headaches: sinus headaches (migraine-like), tension headaches and these. Every single one of them feels different. I know the sinus ones are more like thunderous, throbbing headaches that induce sleep and light sensitivity (haven't had one since I was 14), the tension ones I get when I am incredibly stressed or trying to absorb too much information; it's like a band of pressure around my head. And then there's this, which doesn't fit either mentioned above.

I am told that GPs do not know a lot about CH, but my GP printed me off some info but didn't seem to read it- in fact I think she may have said some of the opposite things to what she printed. I've decided that next time I see her I am going to ask for a referral to a neurologist- I love her and she is a magnificent doctor, but I do not agree with a migraine diagnosis, and the treatment doesn't seem to agree with me either.

I've mentioned I'm a student, however the depth of my situation has not really been outlined- I am a Medical Radiation Science student with numerous health problems, medicated by a Specialist clinician. I struggle financially and support myself on part-time work (no Centrelink, no domestic support); I live with my partner who bears most of the financial pressure (for now). I also deal with a volatile workplace and a dysfunctional domestic circle (not including my partner, he is wonderful).

Now, that being said, I have had enough of the agonising pain that plagues my sleep for months at a time- I dread autumn and spring. I am sick of trying to juggle life's difficulties, study, work, AND remain coherent during an attack. I can't explain how HARD it is to do anything else, even have friends over, when an attack has hit. It is all consuming, and I just wait for time to pass. I appreciate all my GP has done to help me and support me, but I feel I need a definitive insight into what is causing this- not just a statistical assumption and games of "pin the triptan on the patient".

I have zero qualms about the cost associated with a neurological consult- I will quite happily pay for an answer; and a solution.

Silent Planet said:
"You might want to ask and see if they will give you a letter for you to get some O2 and give that a try.

There are so many different types of Preventative and Abortive meds on the market."

She mentioned it before I could, and she said the risks are too great, too dangerous. I think triptans will tend to be a hit and miss (except suma injection), and the problem is I can't use them too often because I am already on SSRIs and risk Serotonin Syndrome if I'm too heavy on the triptans =\

She had me on verapamil SR 160mg as a preventative, and started pizotifen midway through the total length of the verapamil course. I elected to stop the verapamil treatment, on the basis that the episodes will start to come back in a month or so, and if I'm still taking verapamil AND pizotifen, there's no way to tell which one is likely to be improving/not working on the issue. I.e. if I'm not taking verapamil, but taking pizotifen, and the attacks still reoccur (I've had one bad attack in the last 3-4 weeks), then migraine is more likely to be the wrong diagnosis. She has told me pizotifen is the only preventative I can take.

Dusker said:
"Hope by now that you have been able to follow up with appointment with GP etc.

Right diagnosis and treatment--just as for any illness.

Know your medications, side effects and how they effect you and report back to your doctor. Work with your doctor and have a plan for your treatment. Dont forget oxygen and giving a good trial.

It is one of the first line medical treatments and often used for diagnosis.

You sound very switched on--stay that way. It can be a tough road you are on. Medications that work for some, may not work for you and vice versa. "

Hi Dusker,

No not yet- she is on holiday for 3+ weeks (can't remember exact length). I don't have much to report since I saw her last (21/2), which was about 10-20minutes after my last attack. Eletriptan seemed to prevent any FURTHER attacks, but weather or not they would or would not have occurred remains to be seen. I've had a few shadows, but no follow-through on pain.

I don't know if CH is the right diagnosis, but I don't feel like migraine is. It feels like something isn't adding up properly- I know my body well, and from the people I see in work (I work in Pharmacy part-time), I know that if this WAS a migraine, it would more likely respond to OTC meds.

I have so many people complaining of migraines and treating them with paracetamol 500mg, codeine 10mg and doxylamine. It kind of makes me grumpy because they can at least GET relief. I know I'm bad; migraine is still bad and I shouldn't shrink it- but it just makes me wonder why all these other people can get relief and I just have to put up with it. I have a very high threshold for pain and stress, so I can get away with minimal crying; and recently yelling.

Re oxygen; as above- I'm told it's too dangerous for me to try.

I have to be "switched on" as part of my degree, so let's hope that will last a fair while longer!

I have found that zolmitriptan has only provided complete relief once- for about 30mins, before the pain reoccured on the opposite side. It has taken the edge off the pain once. Every other time, even when I take it as soon as I wake up and feel the painful shadows stirring, it's useless.

Sorry for the late extended reply- It's been a week since I had any free time and I should technically be studying now

Thanks for all your replies and support- it's nice to not just rant at friends and my partner who look at me blankly- or worse, work colleagues who say, "oh I get that. I just take straight codeine".

RED out-

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07 Mar, 2012 - 6:24 pm

Hi Red,
It is had to get a doctor that knows what they are looking at. I will never forget my first attack. I woke up thinking I was dieing. I got up so scared and paced the house thinking this is what happens before you die. I went to my doctor the next day and he said that I must of had an anxiety attack with a bad headache from too much stress. Yeah I did have plenty of stress so I guess I believed him. But then it happened again and again. I had just got back from a holiday in Fiji so I really thought I was feeling pretty good. It took me about three years to find a good gp who sent me to see a neuro.
Good luck.

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07 Mar, 2012 - 8:27 pm

Sorry about my spelling. Dam fingers can't run this iPhone too well at the moment.

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08 Mar, 2012 - 10:20 am

Hi Red. I have had Cluster Headaches for a very long time, know a thing or 3 about em.
Yours don't sound like Cluster Headache to me.

http://ihs-classification.org/_downloads/mixed/diagnost.pdf

http://ihs-classification.org/_downloads/mixed/classif.pdf

http://ihs-classification.org/en/02_klassifikation/01_inhalt/

http://ihs-classification.org/en/02_klassifikation/00.00.00_icd10ta
ble.html

http://ihs-classification.org/en/0_downloads/

http://www.headachedrugs.com/archives/preventivemeds.html

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08 Mar, 2012 - 10:34 am

Hi Red
Just a bit confused as to why oxygen would be too dangerous to try! Where you given a reason.
Am attaching a link (hope it works) of a fairly recent study by Prof Goadsby who is very active in working with CHs. This one is on the use of oxygen therapy with CH sufferers. Even if not for you, you may find interesting.

http://www.ncbi.nlm.nih.gov/pubmed?term=19996400

Re not all doctors not knowing all that much about CHs--yes maybe, but they are indeed getting better. As a matter of interest this year is the would you believe it, is the International Year Against Headache! There are a couple of posters you can print off on the left. I take them with me to all drs rooms. Not ONE person has contacted me (I put my tele no on them). And yes, people seem to like to claim them--I get them; and then go off in to what they get etc. That is human nature--we are who we are.
Whatever it is you are having--migraine, CHs or whatever, I hope that you are able to get a diagnosis soon. You certainly dont seem to fit the total picture; but there again neither did I.
It indeed can be a long haul--hang in there--keep us posted--would be interested to hear how you go.
HeatherThis post was edited on 08/03/2012 at 10:35 am

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08 Mar, 2012 - 10:43 am

Just so you know
the link to the left
The International Headache Society
has all the latest classifications that ktulu has attached--explaining all the different types of headaches.
Sort of a one stop shop.
Cheers
Heather

Thanks Ktulu
We put the link on the left cos we thought it was important info as well. Pretty heavy reading at times--but as you indicated, worth the read.
again
Heather

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09 Mar, 2012 - 10:08 pm

Thanks Dusker and ktulu for the links;

I read through the entire ihs Diagnostic criteria, and I agree with you I, I don't fit the whole picture. Particularly the night-time attacks (unless you count on-waking, so early AM), and the remissions of months-yrs...I haven't been alive long enough to find out yet!

Unfortunately though I haven't been keeping a close eye on them up until about* 4 months ago, when I finally snapped and went to the emergency after-hours doctor (more reliable than the hospitals these days). Now I know what to pay attention to I can provide a greater amount of diagnostically helpful information.

One thing I did notice as I was reading was the diagnostic criteria for migraine without aura (mine hit with no warning except for shadows or twinges of pain, like a ghost of pain but not really there).

It says that in order for a diagnosis of migraine without aura to be applied, there must be at least 5 attacks fulfilling criteria B-D.

Criteria D states that at least one of either vomiting/nausea, or photophobia and phono phobia must be present. That automatically excludes MWA from my diagnosis, as I don't experience any of those.

Of course if you stuck a flash light in my eye or yelled in my ear during an attack I wouldn't be impressed, but the fact is I can still [barely] function. Lying down and sleeping seems to aggravate the headache, so I just go on with my day the best I can.

I should also add that MWA does not include autonomic symptoms like tearing, runny nose and swollen eyelid on affected side, which are symptoms I am noticing as I pay more attention to each new attack.

Andrew; I know what you mean. Being told it's from stress, stresses me out lol.. But really, stress isn't a trigger or even a factor in a lot of the headaches I get. I'm going to stay with my GP but going to press the point more thoroughly, I think.

Dusker; re: "Just a bit confused as to why oxygen would be too dangerous to try! Where you given a reason."

No, not given a reason that I can recall. She did say that the majority of patients respond to O2 treatment within ~15mins... But I guess the flammability might be the danger? It doesn't have any medication interactions that I'm aware of. It would be good to try it diagnostically, but by the time I'd get somewhere that had an O2 supply the headache would have either receded or vanished all-together.

I have changed my pill to see if it makes a difference and it hasn't, and the meds I'm on now I've been on for less time than the time the headaches have been occurring for.

I've started the verapamil 160mg SR again.. I stopped taking it after 7-8 weeks of treatment (2 boxes of Veracaps), but I've asked around between Pharmacists and the results of remission or reduction in severity would not be seen prior to 6-8 weeks. Now that I know I'm starting the pattern again (Autumn), I will see if the verapamil reduces the attack frequency after 8 weeks +

I think, after yesterday's agony, I will also print out some of that IHS diagnostic criteria and take it to my GP. I think, statistically, the likelihood of me being an outlier to the diagnostic criteria for MWA is less than the likelihood of me having CH and being atypical.

From what I've yielded of the information from various sources and people, CH has a fairly broad variability in terms of attack duration, frequency and remission times. Yes my gender makes it less likely, but not impossible. Also my age (in correlation with my gender), and the nighttime attacks- my attacks occur early in the morning, usually as I wake between 6am-9am, but it nearly always hits at the same time- like clockwork. I know CH has defining features different to that of migraine, but still with a certain amount of variability.

Please don't think I'm arguing or disagreeing with you- I'm just throwing around ideas that have been sitting in my head, with people who can honestly understand the clear difference between the two vascular headaches, and trying to figure it out in some part myself, to find some kind of solace.
"Fear of the Unknown".

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10 Mar, 2012 - 7:50 am

Red,
I'm not saying that stress causes anything, it is just what a doctor told me once. Just commenting on how some doctors can diagnose incorrect. And also sometimes they can be right even though you might not want them to be.
My call on CH is if you are not sure, if the pain is close to anything you have had before, then it proberly isn't CH. Hope you get on top of it soon.

Andrew

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10 Mar, 2012 - 11:15 am

Hi Red
Lets hope that the medicos can help you with a more definitive answer when it comes to a diagnosis. This may require referral to a neuro who specialises in "heads"! It may pay to do some research before you go to your GP and ascertain who might be the best to see in your area.
At this point, I don't think there has been any mention in our posts about any scans or MRIs etc. These are the fairly "normal" tests we go through to make sure there are no hidden nasties that we need to check out. These are definitely the tests we need to come back as being all clear.
It is very difficult to completely FIT into any total picture of a headache scenario; just go to your GP with as accurate a picture of your headaches and what you are going through.
Keep a record of what happening that you can then take on to the neuro when you get an appointment. Without that they are really flying a bit blind.
Re the oxygen--still worth a try! Take the information along to the GP, hire the equipment etc, not a lot of money. If it doesn't work--send it back. If it does work--you are on a winner.
Good luck
Heather

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11 Mar, 2012 - 11:06 am

http://www.tga.gov.au/pdf/euguide/ewp078801enrev1.pdf

I read somewhere that our bodies connot read text books.
The IHS selection criteria is the gold standard in Headache diagnosis and management. Like it or not, we are stuck with it for now.
To my knowledge the I.H.S commitee members between them have never had a cluster headache. How they come up with this stuff is an educated guess at best.
Selection criteria written by people who have not experienced this pain is lacking.
I am yet to see 2 cases of cluster headache that are alike, practitioners know this.
See Peter Goadsby's recent and somewhat stereotypical remarks about a Migraine patient seeking a bed and a dark room vs Cluster sufferers pacing the room and banging heads against the wall. http://www.youtube.com/watch?v=Ir2wro32sOs
He states this more or less like it constitutes a set of selection criteria in itself.
After 20 years of his research I find this sort of criteria lacking.
Other Neurologists follow his lead. I went a long time undiagnosed because my symptoms include Aura, Photophobia, Phonophobia, so my diagnosis (incorrect) was migraine for many years.
It turns out I am one of the lucky few who has cluster headache, with aura and I seek a dark room and a bed. I don't bash my head against the wall, nor do I see "head bashing" in the IHS criteria.

The selection criteria need an overhaul to reflect the fact that symptoms reported by patients do not fit neatly into IHS pigeonholes.
Nobody ever fully fits the pigeonholes with textbook examples of headache conditions.
Experienced head practitioners are aware of this.

At the very least Red, you have chronic, unmedicated pain. It must be addressed by the Docs, starting with some scans as Dusker has mentioned. Good luck.
Don't give up on the search for a preventative, there are many options.
K.

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11 Mar, 2012 - 11:54 am

Hi Ktulu

You are spot on with your comment that the IHS criteria needs revision.

I found an interesting article that compares CH symptoms between males and females - in it both phonophobia and photophobia are seen as common for both genders. it also compares CH symptoms with those of migraine.

http://jnnp.bmj.com/content/70/5/613.full

This study (late 1990's) is much more recent than the one Lance and Goadsby quote in "Mechanism and Management of Headaches" (1966 - 1971 stuff)

Cheers
Sara

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11 Mar, 2012 - 12:23 pm

Thanks Sara--indeed an interesting study.
It shows how much can be learnt by research.
Heather

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12 Mar, 2012 - 7:28 am

Dusker,

You are quite right, I have not had a CT or MRI scan as of yet. I've decided to ask my GP next time I see her (28th March I think) for a referral. I would rather get to the bottom of this sooner rather than later, and with someone who focuses on 'neurological' issues.

Question though, someone mentioned that O2 can be used diagnostically, does this mean most people with CH respond to O2? Can it be used definitively?

ktulu, you mentioned "Don't give up on the search for a preventative, there are many options." My GP told me that, for migraine, pizotifen is the only preventative option. I'm hoping it's not migraine so that I can have a better chance of prevention, but I don't want it to be CH because the treatment options are hit-and-miss from what I've read.

Also, very interesting video- esp the part about migraine vs cluster headache behaviour during an attack. It seems from this video and the article Sara posted that the information my GP has is somewhat outdated =\ I couldn't lie down and sleep if my life depended on it

Sara- wonderful article, very interesting- especially "100% of women and 91% of men said that sleep was a trigger." I had been telling my GPs (I swapped a while ago when the last GP told me to not stress and change sleep patterns without any meds to help) just that for AGES. I am going to print it out and show it to my GP, BMJ is a reputable source of information

One more thing though; my father appears to get some of the same (similar) symptoms that I do: severe pain around and behind one eye (says it is more painful than when he pulled his own dislocated shoulder back into it's socket), stuffy nose on the side of the pain and 'sinus' symptoms, pain extending to his teeth and lips, and a puffy eye. His occur more in the evening. I've asked him about patterns but he doesn't pay much attention to the pattern of the headaches. He's never been diagnosed with CH or migraine, he assumes it is sinusitis.

I'm going to guess that this could not possibly be a coincidence, but that this could also go either way in terms of CH or migraine. The fact that he said it was more painful than pulling his own dislocated humerus back into the glenoid fossa must mean it's pretty painful!

Thanks for the info guys- always interesting to read about recent studies

-RED

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12 Mar, 2012 - 11:59 am

Hi Red
re the Oxygen as a diagnostic tool--when in acute stage for me--oxygen stopped my attacks in their tracks--for the moment I cant find the definitive reference as it being used as a diagnostic tool, but it stands to reason if it stops an attack...........and my GP insisted I try it before sending me to a neurologist for confirmation of diagnosis.

Suggest do a bit of research with "oxygen treatment cluster headaches" as your search criteria--you will find a wealth of information! Check out the link on the left re oxygen treatment. It helps many CH sufferers and oxygen cylinders and equipment can be hired for home use. The information is there on how to use etc. The key is to use it correctly and at the right rate and as soon as you feel the attack start,

Certainly sleep patterns can and usually effect us--I am very wary of afternoon naps! (when you get my age and retired something you look forward to has to be foregone) This is why we get extra wary about air travel through different time zones! Our body clocks can take some adjusting. Interesting for me--recent trip to Europe--made no difference, but on return noticed a change in time frame.
Re lying down vs pacing etc. I have "trained" myself to be more controlled during an attack! Lying down is not an option--but I now sit and control my breathing. Has taken me some time--but I feel that I control the pain vs the pain controls me. I no longer head bang the wall--I used to; I no longer pull my hair out--I used to. I have experienced the pain of child birth (albeit a long time ago) and also biliary colic. The pain of CH is indeed something else.

With regard to your Father. Who is to really know? My GP treated me for sinusitis first. Off to a ENT specialist even. It was then that he insisted that I come in and try O2 when next attack hit. (live close by the clinic) I also remember my Mum (now deceased) with severe headaches; but now not able to really explore any connections with CH.

I believe mine were cyclic in the early days; I just did not recognize them as such. I was working and put it down to stress and management responsibilities. They only came at night and early in the morning--very rarely at work.

It was when chronic that I just could not manage "on my own" and through my hands up and finally gave in--the rest is history.

Red--unfortunately there is no one single "thing" that says -- ah! that's the diagnosis! And also unfortunately there is no one single treatment. There is a lot of hit and miss. Not one drug fits all; some have side effects that others dont.
You only have to read the information (again on the left) about the many medications: abortive and prophylactic to realize that there are many options available
What have I learnt is this. Give it a try, if it doesn't work for you--don't completely put a line through it! It might work another time. Give drugs time to work. Take them as meant to be taken. Withdraw them as meant to be withdrawn. Have patience. Record responses to drugs. Work with your doctors.
I will now get off my Monday platform.--phwew
HeatherThis post was edited on 12/03/2012 at 11:59 am

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25 Mar, 2012 - 7:52 am

Hello again everyone!

Yesterday was D-Day, my GP appointment I had been waiting for.

I took the article

grannysa said:
"http://jnnp.bmj.com/content/70/5/613.full"

with me and highlighted all the relevant parts, particularly about the statistics of migranous symptoms (which are minimal for me), sleep as a trigger and the inability to sit still during an attack (particularly the contrast between migraneurs being able to sleep in a dark room vs CH patients pacing, mashing fists into temples).

Good news and bad news;

I now have a referral to a neuro, which she was very happy to give me after I showed her the article and my headache diary (including the change since I started the verapamil).

Bad news, looks like you guys will be stuck with me for a while ; the referral says she agrees with my diagnosis of CH

It's preliminary at the moment (IMO anyway), the neuro will have to rule out other things, but a hereditary link is looking more likely now.

The verapamil seems to have helped in the last 2-3 weeks, nothing more than a few shadows as of yet.

Has anyone tried lithium at all? It's something we talked about as a possible prophylactic option.

That's all for now, just keeping you guys updated. Thanks again for all your support and information, it has been incredibly helpful.

RED out.

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27 Mar, 2012 - 4:07 pm

Hi Red
It's interesting that you and so many others here have had such a hard time trying to get a diagnosis. I think I was one of the lucky ones - when I first started getting the pain, I thought it was toothache so headed to a dentist. I was x-rayed and which showed a cloudy mass around the sinus passage, hence I scurried off to s my GP who said 'Sinusitis!' and prescribed some meds.
All was well for a little while (except the meds caused insomnia) and then the next time I had an attack (about 2 months later), I tried the same meds but to no effect. Back to the GP who referred me for a neurological scan, we checked it out, I further described the symptoms and 'EUREKA!* It sounds like cluster headaches'.
My GP has been great since then - he's given me Mersyndol forte which doesn't stop the pain but does knock me out so it'll do me. Unfortunately it makes it hard to function if I cop an attack during the day (as a I did this morning but thank Christ the attack only lasted about 20 minutes) and I often wake up groggy, but at least I can get some sleep when I get attacks at night (when I usually get them).


*my GP didn't actually say Eureka but I think it would've been cool

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27 Mar, 2012 - 4:20 pm

Interesting RE Mersyndol Forte - I also use them. I agree that they don't stop the pain, but do seem to help me cope better.

I've been wondering if it's the 'calmative' component of the compound. I've taken a similar 'calmative, analgesic' type compound and found the same thing - doesn't stop the pain but does seem to help somehow.

Maybe it's a psychological effect - but if it helps me cope I don't care!

Katherine

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28 Mar, 2012 - 2:58 pm

Hmm, funny you should mention that- Lately I've caught myself looking for a way to knock myself out so I don't have to consciously endure it. Better than wanting to self-harm in any case. I'm too scared to try anything; being a student in the medical field I know what the consequences will be... And I value my brain cells, they tend to come in handy for neuroanatomy study ^_^

Nutmeg, in regards to "It's interesting that you and so many others here have had such a hard time trying to get a diagnosis."

I think the IHS criteria is outdated, but that and statistics is what a lot of doctors will base their diagnosis on. The information I took with me about recent studies on CH led my GP to reevaluating the diagnosis of migraine (especially because my father gets similar attacks, but with more 'sinus-like' problems than me), and referring me to a neurologist. So nothing nasty has been ruled out as of yet. But the verapamil has helped more than ANYTHING else I've tried for migraine. The only problem is, the one abortive I HAVE had success with (sumatriptan subcutaneous inj.) has caused symptoms of serotonin syndrome in the past. So it's a no-no for me until I can see a neuro, which could be several months yet.

I wish I could sleep it off- no chance in hell.

Nutmeg and Katherine, how long did it take you to get a diagnosis? Was it by a GP or a neurologist.

RED-out

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30 Mar, 2012 - 1:50 pm

Hi Red

I still haven't got a diagnosis - started 'complaining' about the headaches about 4 years ago. One of my old GPs didn't even blink an eye when I asked if it was OK to take about 48 paracetemols a week.... (he said it wouldn't hurt me as long as I didn't take more....)!!!! Now I hardly bother with medications. Ice packs & head banging & panting etc to get through. If I have too many big ones in a day I take the mersyndol fortes.

Thanks to a HA diary I have 'proof' of 98 HA in Jan, 103 HA in Feb and 70 in Mar (so this is a good month )

Here's my trip down the diagnosis trail with a new GP:

- Started with a new GP in Sept 2011

- got an MRI booked in Oct 2011 & got referred to a neurologist when a 'cyst like structure' showed up in my pituitary gland, but he wouldn't see me til I got an all clear from a neuro-surgeon. GP also referred me to an opthalmologist to make sure my optic nerves were OK.

- Feb 2012 got an all clear from opthalmologist

- Mar 2012 finally saw the neurosurgeon (surprise surprise - he said nothing he can do, unlikely to be the cyst causing the headaches & see a neuro) Now still waiting for a neuro appointment.

- in 3 weeks I go to Sydney to see a rheumatologist because with a few other symptoms on top of the headaches I could be having an auto-immune issue (like SLE Lupus).

I'm heading off to the GP again this afternoon. She's been really good - and while she hasn't been able to provide a diagnosis, and won't prescribe much without one - she's the first Doc to actually take my pain seriously! (Does help that I've had a few minor episodes in her clinic so she gets to see some level 4s - weepy swollen red eye, slurred speech and all!) She's even taken to giving me standing medical certificates regarding my 'chronic headaches currently under investigation'.

KatherineThis post was edited on 30/03/2012 at 1:52 pm

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31 Mar, 2012 - 5:34 pm

Yesterday I went to the GP and got hold of the neurosurgeon's written report - he said 'suspected migraines and cluster headaches'. And the GP said 'in that case we can try oxygen as a treatment'....

Yippee - I'm so happy I could cry - not because of the pain .... just because I'm now getting somewhere with a diagnosis and treatment!

So in answer to your question Red, it looks like the neuro is diagnosising.

Have a good weekend everyone.

Katherine

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01 Apr, 2012 - 4:29 am

Hi Katherine,
well done, some progress at last.
Have a hunt back through for Barry T. Coles' posts- he explains oxygen useage in excellent detail, something even doctors sometimes get wrong. Oxygen therapy has to be done correctly or it's less to non effective. Good luck and
cheers peter.

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01 Apr, 2012 - 9:45 am

The O2 results are in.

http://www.clusterheadaches.com/O2/Oxygen-survey-final.pdf
K

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01 Apr, 2012 - 10:54 am

Thanks Peter and Ktulu
K

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01 Apr, 2012 - 1:17 pm

As a newbie to the forum, but not to clusters, I am finding this extraordinarily interesting.

I remember my very first cluster was when I was pregnant with my first child.
I was 19 years old, I was in good shape.....and I woke up one night thinking that I was about to die. I remember trying to move because lying down was hurting so much. It felt like someone had drained all the water from around my brain and my brain was no longer cushioned. But what I remember most, is the intense, searing pain behind my eye and the fact that only half my head was under attack..

I remember thinking.....am I having a stroke? Am I suffering from an aneurysm? (Remember I was only 19.....I was running through the medical conditions I had heard about).... and then there was silence. My head stopped screaming and in the darkness of my bedroom I wondered if I was dead.... I actually didn't care if I was dead.... all I cared about was that the pain had subsided.... And when that pain came back, I actually wished I was dead. That was my first attack. In the dead of night....out of the blue.... sadly it was not my last.

I am now 30 and so very thankful that I have found somewhere to learn from others who understand. I am thankful for every day that I am not in pain.

- Naomi

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27 Jun, 2012 - 7:48 am

Well, it's been a while. Time for an update?

I had my appointment with a neurologist last week. He has said that the attacks are definitely typical cluster headaches, but that I am an atypical patient. It was wonderful to meet a specialist so knowledgeable about the condition! He even reconstructed the process of most CH sufferers presenting to emergency, and suggested writing a letter to get past triage further down the track if need be.

We are now on the journey for an underlying cause of CH; particularly obstructive or central sleep apnea. He has said that my history and familial history is very suggestive of OSA, which is a predisposition for CH. Do many other CH sufferers here experience sleep disorders, particularly OSA? I am not obese by any measure, and I don't drink/smoke, so I am wondering about structural abnormalities in the larynx/pharynx.

I am now armed with sumitriptan nasal spray for the next attack, and a continued daily dose of verapamil. The last bad attack was 9/5/12, and since then I've had next to no shadows, twinges, or attacks. I think I can (touch wood) say that I am in a remission for the time being. I am not looking forward to spring and summer again though

The doctor has said that, if the sumatriptan nasal spray doesn't work, we will look at oxygen for abortive measures (both the letter for ED and a home supply).

Just wondering, do any other sufferers who use verapamil SR stop taking it when the attacks stop? I'm too scared to stop it incase I'm wrong, but I don't want to become resistant to it as a prophylactic treatment, because it has been working really well!

That's all for now,

RED

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27 Jun, 2012 - 8:40 am

Hi Red,

It is good that you have found a Neuro that knows what they are talking about, you might want to add them to our list of Practitioners on the left hand side.

Witht the Verapamil i was on high doses up around the 960mg per day, when i was in remission (rare occasions) i redused the dose down to around 360mg so i still had it in my system and as soon as the attacks started again i would increase to doses.

With the oxygen i would be getting a home supply now and not waiting, it isn't very expencive to hire. It would be good to have it on hand for when the next attack starts. You need to get the O2 going and the onset of the CH and not wait until you arrive at the ED of your local hospital, even with the letter you still may have to wait until they can get you in.

I hope that this helps you in some way.

Silent Planet
Matt

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27 Jun, 2012 - 3:54 pm

Hi Red
Would agree with what Matt has suggested re the oxygen.
Re the Verapamil, I am only on a low dose and as I try desperately to come off all meds--it will be the last one I tail off of.
Great to hear from you and that you have the "upper hand".
Cheers
Heather

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