cluster headache

[lebowsky]

Hello guys,

i would like to know if anyone has this kind of problem and how deals with that.
one of the causes of CH, among other more scientific, is stress, and since a cockpit nowadays is a major stressing environment it is interesting to me to know how pilots (pro's and not) keep this monster away from them or at least try to live with.

cheers

[henry crun]

I have had CH for about 40 years.
The docs do not know what causes them; in my case it was not stress that started them, and it certainly is not stress now.

I have tried acupuncture, all the usual pain killers, physiotherapy, all without success.
I have been prescribed Pethidine on a couple of occasions as a last resort to relieve extreme pain, but it is not the sort of drug one wants to use regularly.

Then came Emigran (Sumatriptan) which I take as an injection, works like magic, can go from a screaming raging CH to normal in 5 minutes.

[lebowsky]

sorry to hear that mate.
are you cronic or episodic?
do you use imigran in flight also?
ever used steroids?

sorry for the scientific approach...

[henry crun]

They started off as episodic but have been chronic for quite a few years now.

Have never been prescribed steroids, and do not fly now so question of using emigran does not arise.

[crippen]

Ergotamine - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Ergotamine)

Works well for me.

[gingernut]

Ouch!

One of the most painful conditions known to man.

A useful synopsis here treatment - General Practice Notebook (http://gpnotebook.com/simplepage.cfm?ID=705036310&linkID=9994&cook=yes)

BASH guidelines here http://216.25.88.43/upload/NS_BASH/BASH_guidelines_2007.pdf

[Daz801-82]

I have had this condition since I was about 7 yrs old. I used to refer to it as "eye ache" as that was exactly how it felt, my eye would water and feel if it was about to explode.

As of late, say the last 5-10 yrs, the episodes have been less frequent, and were in most cases triggered by alcohol :rolleyes: .My treatment consisted of 2 anadins and a lie down in a dark room keeping the affected eye warm.My g.p. told me I`ll have to live with it, after suffering from an early age, I replied " I`m already living with it"for the past 40 years.

"Touch wood" I haven`t had an attack for about a year now,and I enjoy a couple of pints a week ,so may be it could be loosing it`s grip.

Daz :ok:

[boguing]

Sorry to see so many fellow sufferers.

I've had them for 33 years, usually for a three month period as often as annually, but up to three years occasionally.

I've seen all sorts of specialists, and on a few occasions received treatments that seemed to work. As the years passed I realised what was happening. Start a period of CH. Make appointment to see (almost always different) GP. Let him have a shot. Get referred to Consultant. Appointment is now some months into the cluster, so anything suggested coincides with the end of the cluster, and seems to have worked.

The only thing that did really seem to help was Oxygen at 100% by special mask. (100% is too dangerous for patients with breathing problems so they are not normally handed out). Snags are that you might fall asleep with the mask on. two outcomes. Oxgen runs out. Oxygen is pretty dangerous - explosions wise.

The definites are:-

Having several hundred headaches, and the corresponding quantity of painkillers turned me into a Zombie. No sleep (almost too scared to go to sleep) and overdosed. Because I never really looked for sympathy it never really ocurred to me to discuss this with employers. So. Careers ruined.

There is no point in taking normal painkillers as directed. For one, they aren't really even kicking in when a shorter headache is on it's own way away.

I'm now going to make myself look like a complete idiot. But it works for me.

Given that the O2 seeemed to work, and also that I was always drawn to cool places, I wondered if cold was the answer.

So. Here goes. Tried lying on the kitchen floor with the freezer door cracked open, inhaling the cold air. It worked.

O2 isn't really the answer (imho) it's the fact that it's cold, and at 100% more cold than the normal 25% + 75% ambient air would be.

So for the last three episodes I have kept loads of ice in the freezer, and lots of water in the fridge. When I went out, I took a load in an insulated bag. Headache coming on? Water into ice, then hold water in mouth until it's warming. Repeat, and keep repeating until it's easing, cooling the brain either 'externally' with cold air, or internally with the ice/water.

So feel much better without the overdose.

Trouble is, mine get more and more frequent and more and more painful, so I've not managed to go through a whole episode without the painkillers.

One tip for taking stuff like Ergotamine, Paracetomol etc.. crunch them up and dissolve with Tonic water. (only as much as a couple of mouthfuls) again, hold in your mouth for as long as poss. Bubbles seem to help it into the bloodstream faster.

I have a theory about why the cold works, but it's too long to go into. If any of you find that it works for you, please let me know, and we could take it to some of the scientists who have researced CH.

Lastly. For various reasons I've been on Cipralex (an anti-depressant) for five years, more or less continuously. No headaches for five years - longest ever.

edit. In my case we eliminated all known triggers (thanks be) and the only stress connection that I ever noticed was that they came as stress was removed. Good examples, after finishing a yacht race, a long fast drive UK to Alps.

[zakman1982]

I have lived with cluster headaches for 28 years now and based on my many years of dealing with CH and trying many different treatment options, the best results have come through homeopathy. I live in the Cleveland, OH area and a friend recommended for me to see an experienced homeopathic consultant. The remedy he recommended actually stopped a major attach in a few short minutes and continues to be effect. To be honest, I was a little skeptical at first, but after 28 years I was willing to try anything. The best part is there are no side effects and the cost is very reasonable compared to expensive drugs and treatments. My wife and I were so impressed by the results that we are now having our daughters seeing this consultant for their particular needs. I would make sure that you see someone in your area that is experienced with homeopathy and who can recommend various remedies and who is willing to follow-up with you. My thoughts and prayers go out to all those who suffer with cluster headaches.

[Loose rivets]

Unqualified opinion from a retired pilot. However, some of you will have seen multiple posts by me on classical migraine. I've seen what it can do.

The patterns do sound like something is going into spasm because of a perceived threat. I hypothesize that this mechanism can misidentify problems and be very counter-productive.

Bear in mind that blood vessels have very complex structure and react in the case of trauma. It is odd how sometimes the relief of stress seems causal. "Sunday migraine," is the equivalent to that I'd imagine.

What to do? Well, breaking the cycle is vital, and I think that in the case of counter-productive spasms, there is a valid case for the TEMPORARY USE of benzodiasapines.

I shout temporary, because of the dangers of using this amazing drug. For me, it was rage, in others it has been total addiction with a slew of unpleasant symptoms. However, the short term use under supervision may be very telling.

If your GP would prescribe sufficient Valium for such a test, then, at least in some people, they may find that it unlocks the root cause of the overall pain. Taking a modest amount and then really trying to relax the affected area might just bring results. If it does, then the next astonishing fact seems fairly consistent in many cases: Once the problem is identified, it's almost as if the circuits causing the problem know the game is up. The need for more Valium diminishes or even goes altogether. Having some nearby is like a Linus Blanket. The comfort of knowing it's there if you need it.

[boguing]

Further unqualified, but highly experienced, opinion.

I get Classic Migraine too. They started about 16 years ago, so I know the difference (and have been used as a Guinea Pig because of it).

LR, you mention blood supply. My theory of cold is this.

I saw a documentary on the evolution of Man. At some point we developed a pair of holes in our temples, and scientists were puzzled as to their pupose. Dopplers showed that the blood flow could be in either direction, and they concluded that it was a brain cooling system. My guess was that a CH sufferer had a screwed system, and that fooling the nerves responsible for flow control is what stopped whatever other nerve was causing the pain from reacting.

Not a foolproof thesis, not least because CH is partly defined by it's one sided presentation. However, that's not to say that only one flow control is malfunctioning.

Give me migraine any day.

[SassyPilotsWife]

As a medical professional and skeptic, I took my daughter to a doc who claimed to be specialized in headaches. Boy is he ever!! This is what his research and training taught him and before he went into depth, he told me what type of treatment we were going to do for my daughter ( she's 20 and has suffered from headaches since about 13 years old )

First he said.. no more meds. No more ibuprofen, no more butabital, no more pain meds, no nothing !! I said well she can't go without something for the pain and he said in order to begin treatment she has to " cleanse her system" I was very skeptical and wasn't going to allow her to be pain free but i listened to him. Here was his explanation and treatment.

First of all, he said cluster headaches are caused due to an imbalance in neurotransmitters which when not working right, cause blood vessel dialation in the brain ( huh ? don't pull out the women are nuts and complain of pain because of a chemical imbalance mister ! ) but i still sat and listened.

A person’s brain chemistry (neurotransmitters) falls into two categories: excitatory (stimulating) or inhibitory (calming). For a brain to function properly there must be a balance between these two types of neurotransmitters. And when an imbalance in neurotransmitters exists, headaches or migraines can occur

The 4 neurotransmitters creating this are gaba, dopamine, norepinepherine and seratonin. The screwed up levels here also aggrivate pain due to the lack thereof ( reduced seratonin levels alone can increase pain).

So, if infact this was the cause of her headaches and it wasn't prior diagnosis such as sinus problems improper vision , stress, hormones etc. ( easy diagnosis so they could move onto the next patient) in the past his treatment should work right ? It has and does.

Treatment:

As stated above. Stopping all meds that were previously given, even OTC such as advil, motrin ect. His reason for this was, they are actually contraindicated in the imbalance and if they were still taken, we woudlnt know if his prescription treatment was working alone or not. 48 hours later he began his care plan which was:

He put her on a mild dose of an anti depressant, cymbalta which offers very little side effects unlike others to " reorganize and create balance" of the neurotransmitters but he said this med alone will NOT work as the most important part of getting neurotransmitters working regularly is one of the most important requirements of the human body. SLEEP. Without sleep these neurotransmitters aren't able to rest and regroup.

He put her on a muscle relaxer Zanaflex 4 mg to provide her with a solid sleep of at least 5 hours. This med only has a 5 hour shelf life and does not cause side effects the next day such as groggy, tired nor addiction etc. Also, it would offer muscles in the body to relax and allowed good REM sleeping. Both meds however need to be taken daily and the zanaflex should be taken pretty much around the same time each night to enable regular sleep. He said she needed to go to bed around the same time each night or close to it. I realize pilots just like firefighters, paramedics and others with crazy schedules might not get that but either way, take it before sleep.

So this treatment started nearly 3 months ago and in that time frame, she has had maybe 5 headaches and of those 3 were during her menstrual cycle which weren't nearly as bad as before.

If you want more information on this doc or if your doc is interested in this doc's research, discovery and treatment feel free to PM me. This doc has been a real lifesaver for sure. My daughter is in college and what a difference her quality of life has been without the headaches !!



Best of luck to you !!

PS. some docs put patients on a bp med in place of the anti depressant if their pressure can sustain the reduced BP from the med. My daughter who is an athlete has a BP that is usually on the lower end. I will also add that the cymbalta 30mg he placed her on did not change her mood nor make her into an emotional zombie. We have noticed no difference other than her increased happiness because she's not suffering the headaches every day!

[Loose rivets]

First of all, he said cluster headaches are caused due to an imbalance in neurotransmitters which when not working right, cause blood vessel dialation in the brain ( huh ? don't pull out the women are nuts and complain of pain because of a chemical imbalance mister ! ) but i still sat and listened.

I'm making no distinction between Cluster headaches and Classical migraine, as I feel there may be a connection in the mechanism. Also, in the above post, some of the concepts seem to tally - if only loosely - with ideas I've posted on for many years.


The logic of the dilation got my attention because it's long been known that one of the phases of classical migraine is caused, or at least accompanied by, blood vessel dilation. I had wondered if the dilation was 'ordered' as a matter of extreme urgency, because of the natural clamping of the same blood supply having become excessive. So much seemed to fit, the deep down functioning-logic of the mind, ordering processes that are often counterproductive. (A perceived threat, albeit, long term worry.)

Muscle relaxant logic is interesting too, not least of all because of the Botox connection with stopping migraine before it starts. Very localized areas, but the relaxant would I suspect, ease such a locked up group of muscles.

I think the overall description of his theory was more than a little over simplified, but to really know what processes take place at all stages, seems to still be beyond researcher's ability to detect. And this is with fMRI and other advanced tomography. One of the problems is catching a subject while in the throws, so often the volunteers spend ages waiting to have a headache, only to give up and go home - with a headache.

So much will have to be derived from pure deduction and trials and I think it's important that many old concepts be put on hold, if not discarded. One of my neighbors has been a GP for 45 years, and she suffered menstrual migraine for part of that time. Nothing would convince her the blood vessels were not constricted, and I suspect she spent a lot of time during the episodes trying things to dilate them.

There's a huge amount to be said for the idea of starting with a clean sheet of paper, but like your daughter, the idea of not taking something to sooth the pain, is a very difficult concept to accept.

[boguing]

SassyPW. Very interesting read. No matter what the underlying cause of CH is, I certainly believe that (in my own case) that the sleep depravation makes matters worse and worse, until, perhaps, I was so incredibly tired that I was able to shut down completely.

This also fits with the fact that I do sleep so well now that I'm on Cipralex. It doesn't seem to help with what it was prescribed for, but I dare not stop taking it.

LR. As I mentioned, I get Clusters and Classic Migraine, and am pretty convinced that although both result in pain, that their trigger mechanisms are different.

[Loose rivets]

The trigger, perhaps . . . but that trigger might initialize a common process. I have no strong opinion on the validity of any of the mechanisms, but just strong feelings about the suffering the symptoms cause.