Anyone else on here suffer cluster headaches?
 

Just curious really. If so what treatment are you on and how often do you get them and how severe are they?

Think my friendly eyeball tweezers are back.
:(

Re: Anyone else on here suffer cluster headaches?
 

hiya i had a spell of cluster migaines a few years back quack had me on 75 mg amatripatine ( spelt some thing like that) on a night there a mild anti depersant

Re: Anyone else on here suffer cluster headaches?
 

Sorry to be naive, but what are cluster headaches, just wondering if they're what I had a couple of years ago.

Re: Anyone else on here suffer cluster headaches?
 

Sister in law gets them.

a few years ago she kept going to the docs often twice a week complaining of headaches, nothing worked. In the end he wanted to prescribe anti depressants. She demanded a second opinion and saw a neurologist. He conducted a few tests and she ended up falling on her backside. Next day she had a CT scan and an acoustic neuroma was discovered.

She has had it removed. It has left her permanently deaf in her right ear, facial disfigurement, a bone anchor hearing aid. and a very apologetic doctor scared ****less of being sued. Ironically she was a nursing student at the time. She had to delay her graduation by 6 months. but did complete and now works as a staff nurse on ENT at the local hospital.

Recently the headaches have returned. This time the doc took them seriously. she ended up admitted for a CT, nothing found this time, observation and the final diagnosis cluster headaches. For a while she was having to argue. It is not migraine etc. But at least because of her past history they now treat her with some respect and listened.

I will find for you what medication they have prescribed.

Re: Anyone else on here suffer cluster headaches?
 

just so you dont feel allone
ive suffered fom serious cluster migraine fom being about 4 years old
im on 100 mg amatryptaline a day also i have imigran sumatryptan succinate injections and cocodamol 500 30s
the injections work brill

Re: Anyone else on here suffer cluster headaches?
 

Sorry I don't know what cluster headaches are either. A good few years ago though I used to lose my eyesight slowly starting at the outside before finally working its way to the middle resulting in me only being able to see about a 5mm circle on a page of writing from normal reading distance. The rest was all blurry moving colour. My eyesight would then slowly return only to leave me with a huge huge painful headache.
Never found out what it was only happened twice and I hate going to the doctors.

Re: Anyone else on here suffer cluster headaches?
 

I dont know what they are either, but I was reffered to a consultant neurologist in january of this year cos of severe headaches, and he didnt know what it was either, which was nice.

Re: Anyone else on here suffer cluster headaches?
 

I suffer from the odd migraine (they seem to come in bouts usually when the weather changes and last for a few weeks (not each one)(summer to winter etc) I tried everything and a friend suggested sumatriptan (can get it over the counter now its called Imigram i think) anyway for me this stuff is amazing!!!! If i take it just as i feel one coming on, it goes within 30-40 mins wheras before it would last several hours of agony.

Re: Anyone else on here suffer cluster headaches?
 

If you get them you know about them. They're also reffered to as Horton's syndrome, suicide headaches and there's loads more terms I believe. I spent a year or two suffering before I went to the doc who reffered me to the hospital. Since then I've had about one bout a year which lasts between a month and three months with attacks at between one and four a day.

I only posted up cos I was curious and I'd felt a few bad tinglings the past few nights.

What syptoms do you get? I have a niggling in the back of the neck, mental pain like my right eyeball is being pinched with tweezers from behind, watery eye and I've felt sick from time to time. For a year or two I had to use the nasal spray which I found almost useless. Then I signed up to do an oxygen test thingy where I get one oxygen tank and a placebo but then my bout went. Then it came back and I got the injections. My word they're brilliant for me. I can handle ten minutes of agony compared to forty. I admit I'm pretty fortunate compared to some.

I've used this charity a few times when I've been a bit desperate and I think it was them who put me onto the oxygen trials (since which I've lost all the details). Any sufferers or mates/relatives tell others.

Here's a little tip for when and if you get the nasty niggling on the neck and eye before a headache comes on. I found out by chance when I had no treatment on me and popped into a petrol garage. I got whatever rubbish painkillers they had and took them with a can of V energy drink. it completely aborted the attack! When I spoke to the helpline form OUCH the fella said that ice cold redbull often stops them if you time it right. Thinking now though I reckon room temperature would work better due to the fact it'd get absorbed quicker.

Tim that's a terrible story. I don't know what the thing your Sister in Law had removed but I'm sure it had to come out anyway. I'm glad she's had it diagnosed. Again I consider myself fortunate that I diagnosed it myself when I remembered an episode of casualty. There was a man on a wheely stretcher in agony and it baffled everyone until (in true casualty style) someone had a hinch and that was that. I went to see the head doctor and he confirmed it to me. I could've kissed him.

For those that suffer or think they do look at this website: http://www.ouchuk.org/html/ (same as the one I linked to earlier). If you think that's your problem, get it confirmed by refferal and then push and push your doc until you get at least the injections of sumatriptan. Oxygen through a special high flow respirator thingy seems to be the best treatment but the most expensive. That is why the trial I mentioned earlier was on, to get it licensed. I'm not even sure now which but I think the injection is the only official treatment but doctors will try the cheapest first. Sumatrptan by the way stimulates the seratonin receptors in the brain (again I think! I'm having a drink) shich oddly are the bits that give out the happy hormones.

Hope this helped a bit. Other sufferers lets have your tips.

BTW stopping drinking, smoking, drugs, sex, rock and roll... none of it seems to help. I've tried and so has the only other person I know who's suffered. (Stopping some or slowing them down may help a bit). I've always thought tiredness might have something to do with it but it's hard to tell.
:)

Re: Anyone else on here suffer cluster headaches?
 

My fix it if i catch it early is 2 of the nurofan rapid 2 paracetamols and a big can of redbull (or other crap energy drink like tesco kick) if i neck that lot quick enough 9/10 it will wipe it out before it goes head bursting. My early signs are the tension neck then the glowing needles in back of right eye followed by the mega headache and the brain busting honk your dinner down the loo.
I've tried the imigran a few times but never have any close at hand when i needed them so ended up in bed in the fetal position hoping it will go or death what ever comes first.