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One Of The Most Painful Conditions Known To Man/or Woman..!



I haven't a clue what the 'ell' i'm doing with this blog malarkey as its the first time ive attempted one... Here goes..!
Just thought i needed to share this with the lovely folk on Netweather and wonder if anybody on here suffer with CLUSTER HEADACHES..anyways best hurry as i dont know when the next attack is coming.

Around late August early September every year (except once i had a year headache free...!!) for around 14 years i suffer the most incredible pain, infact the first time it happened i was rushed into hospital as it was thought i had meningitus but after a lumbar puncture the results came back negative so the doctors said it was most likely a viral infection affecting part of my brain. The headaches returned a year later so i went to see my GP and was given a course of anti-biotics and told to take 'over the counter' painkillers, this i did but with little or no effect, anyway after 3-4 weeks they disappeared and i thought nothing of them until the next year when they returned but this time i didnt bother going to see my GP and just rode it out and after 3-4 weeks they disappeared once again. This went on for for years but 2 years ago the usual duration of 3-4 weeks past and i was still suffering 3-4 attacks a day some times lasting over 3 hours, i couldn't take this torture any longer and went to see my GP again who referred me to a nose, ear and throat specialist as sinus could be the problem ( fungi spores being the mechanism as they happen the same time every year) After several more weeks the pain had disappeared again. I then recieved my appointment with the specialist but after consultation and a C.A.T scan the results showed i had no problems, infact the consultant said i had what could only be described as better than normal sinuses.!! . I then recieved a letter from my doctors surgery to see a a different GP who had been talking with my usual GP and said that he might know what the problem is as he recognized the symptoms, was i glad i saw him as his diagnoses was spot on and now i self administer injections to manage the pain. I still dread this time of year knowing i have to go through this ordeal as i still have incredible pain as i'm only allowed 12mg in 24 hrs and sometimes i have several attacks a day but at least i know that some days i can be virtually pain free.
If anybody on here suffers or knows somebody who does let em know that there is help out there for this debilitating 'disease'.



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Hiya, yes, I can empathize as a fellow sufferer.
Had this for over 20 years.
The worst pain is the acute stabbing in my eye(s)
An MRI scan showed a small amount of pressure on the
trigeminal nerves.
I've tried 02 therapy and various strong drugs, including
one usually for epilepsy.
The 02 didn't help and I found the drugs side effects
intolerable. I find a cold compress (not too icy tho)
helps a bit.
My father has long suffered with this too.
Glad you have some pain relief for the bad times.
Good luck to ya.

B. :)

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Hi BL thanks for your reply, sorry to hear both you and your father suffer the 'devil' too, as much as i empathize enormously it is somewhat comforting to know i'm not alone . I have heard from various 'cluster' sites that O2 has been quite successful for many sufferers especially episodic but carrying a bottle around for several weeks could prove a little problematic and rather dangerous especially for me as i'm in my final year at college training to be a chef..!! Ive been reading a lot recently about this crippling affliction and around 15% of sufferers have it chronically..!! How on earth do they manage, my 2 months of the year when i suffer seem like nothing when i read their horrific account of daily life. There seems to be more research into CH and astounding as it sounds they are looking at LSD and psilocybin (magic mushrooms) although thankfully the non-hallucinogen 2-bromo-lysergic acid diethylamide to prevent attacks occuring, but as you know we'll do anything to rid ourselves of these demonic headaches.

Does Beverley still have that nightclub/bar out in the sticks a one story ugly flat roofed building? as i stayed in Beverley for a couple of months back in 91 when i worked for EVE power transmission, lovely little town/village i stayed in a pub cant remember what it was called but it was old with white washed outside walls and served a wonderful breakfast i remember your curry shop wasn't so good though mince in curried gravy does not warrent a beef madras..!!
Kind regards.
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Hi again Paul :)
Thanks for your reply.
I hadn't heard of the LSD & Magic Mushrooms
as a source of help for CH. Goodness, lol.
Been a while since I read up on this topic.
You would wonder why one becomes susceptible
to it.
I don't see the medics about it anymore and
just cope with it. Maybe it hasn't been so
severe this last couple of years, but it is
a chronic condition for me, I have it more months
of the year than not and can't work out what
brings it on.
I have been offered steroid injections to the
scalp, but haven't gone for them so far.
Anyway, I hope you go on Ok.
Glad you know of Beverley town, it is a lovely
market town with many fine Georgian buildings and
of course the glorious Minster.
I do apologize to you re. that nasty sounding
curry though! lol
Good luck with the chef training.

BL :)

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Hi NL.

Pleased you got some answers and treatment to at least help you manage your condition.

Did you ever get an answer as to why your CH is triggered in this late summer/early autumn period? Is it something thats related to fungi spores, all-be-it not affecting your sinuses? Or maybe its to do with changes in air pressure/temperature/dampness?
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Suffer from the chronic form of CH and not much to add other than my sympathies

Hardest part is getting diagnosed correctly, took me nearly two years of describing the symptoms and struck lucky with a locum GP who got it straight away. Had the MRI and all ok, then off to see the neurologist who seemed sort of glad to actually have a CH sufferer rather than the usual Migraine
Tried all sorts of drugs from Gabapentin to Lithium, hate the side effects and just use Sumitriptan as an abortive, injected form is the quickest acting followed by the nasal spray and then tablets. Also have a letter from the doctor that i can nip in the hospital for o2 if needed. If it gets really bad I have a five day course of 60mg of steroids a day which seems to break it up .
Strangely it affects me from about Sunday to Wednesday and then usually eases off again, no idea why or why I should start sipping water during the attacks. Had it this afternoon, but knew it was coming and got in quick with the meds

Consultant has agreed to leave me to my own devices and sure he thinks i'm a bit mad, bad enough having the CH without feeling out of it the rest of the time

My particular triggers seems to be high temperatures and strong scents like perfume or fumes, sure there are other things too

Hope it eases up for you and try not to let it get you down too much although i know its hard. Would be nice to be able to lie down during the attacks, but i always get ultra restless and end up pacing about like a caged lion

Don't let it bother you when someone says "I know I get bad headaches"
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Thank you all for your sympathies and understanding, These attacks this time around have been the worst since i first got them, so now I'm on a course of steroids and angina tablets (11 in all) as well as my sumatriptan injections, seems to be doing the trick in easing the pain but not preventing my attacks but all in all feeling a bit relieved.
Nobody really knows why these CH's are triggered but there seems to be possible biological oscillators and synchronizers believed to lie within the hypothalamus mediate seasonal changes seen in animals which are linked to photoperiodic changes, this theory is only speculative at the moment as we need more funding to find the cause and cure of this debilitating condition. But as you say Huntso when people say "I know I get bad headache" it gets on your goat as they have no idea, sometimes I wish I could give them a sample of what I'm going through even just for a minute (even though I know they'd be screaming in less than 10 seconds for me to take it away). Really sorry to hear you have them chronically Huntso, i really don't know how you manage at least I know i will (hopefully) be pain free in around 4-5 weeks time.
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Update on my condition is looking very rosie, ive now been on verapamil (Heart condition tablets) for almost a month now and my cluster attacks have now been vanquished, I have to continue to take this medication as its a prevention measure and not a cure but absolutely ecstatic at the results. I now can lead a normal life as long as I dont forget those tiny yellow pills..!!
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Hi, I have also had this horrid condition. Well It is either cluster headache as one doc told me or Trigeminal neuralgia as another has said. I get random attacks and no one that hasnt had it could possibly appreciate the pain. Its just awful. I ususaly get put onto a 50MG dose of Tramadol which knocks me for 6 and means i cant function although it does take the edge off the pain.

If it gets really awful then i tend to go to A+E and wait for around 5 hours to be seen. they then stab me with a needle filled with steroids and the pain begins to subside. I dont have private health so im at the mersey of the NHS (No hospital spaces) lol. :wallbash:

I have had 5 or so attacks this year but none for over 3 months now. Work doesnt understand, my wife doesnt get it and its just the worst pain in the world.

good luck to anyone else who suffers...

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[quote name='lloydyd' date='07 October 2010 - 09:41 '] Hi, I have also had this horrid condition. Well It is either cluster headache as one doc told me or Trigeminal neuralgia as another has said.

Sorry to hear your a sufferer of severe headaches whether it be 'clusters' or TN and the mis-understanding of those around you but I dont think anyone who has'nt felt the wrath of clusters could possibly understand the levels of pain that what we have to reluctantly endure but I have witnessed sincere empathy especially if an attack happens in the company of others. Clusterheadaches are distinguishable from trigeminal neuralgia by symptoms (back in the early days clusterheadaches were not widely heard of, so was often mis-diagnosed as 'Trigeminal Neuralgia') but now becoming better diagnosed, even people I've come across recently know or have heard of clusterheadaches. I'd urge anyone who is suffering or knows anyone that suffers to go and see their GP and mention the exact symptoms. There are many good sites on the internet covering the condition which can aid self-diagnoses but still seek medical advice. I'm still taking verapamil and its working very well and I've not had to inject myself for a few weeks now or have had to breathe pure O2 (oxygen) so ive been leading quite a 'normal' life...
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Its been awhile since Ive updated my condition as Ive just been able to cope well with the medication and had recently been employed as a chef but now they're starting to fail and manage my 'clusters' and I'm now back on the 'sick'. My GP prescribed Topiramate but this only made me feel agitated and aggressive so I stopped taking them after just over a week. I'm now taking an intense course of steriods and an increase in veraparmil dosage (480mg).  My life at the moment has surely took a nose-dive with the only relief (albeit temporary) is my sumatriptan injections and oxygen which I'm going through two large bottles every 3-4days..!! I had an excruciating attack today one of the worst for years full on 'suicide',.. Bad times....

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The "BEAST' is again back with me. This bout started a couple of weeks earlier (11th of August) and now its becoming intolerable, I've now had over 100 attacks and gone through 16 injections and countless bottles of oxygen...when will it end........I've been offered the occipital nerve block procedure but the thought of having over 30 injections to the neck and scalp is somewhat off putting to say the least and many reports saying you get 2 weeks reprieve ( if it works) at most is not the result I would have hoped for...  Anyway going by my past experiences with this condition I will be coming out of this cycle in the next few weeks and then my life can start again and get on with building my catering business adventure..

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