www.OuchUK.org - Cluster Headaches

[jaydabee]

As I never had my diagnosis made official. Now I'm due back to work in the new year and I feel if I can't clear this episode I will lose my job and my home

[jaydabee]

I have battled with episodic CH's for approx 10 years now. The doctors all had their theory's but it was research online that brought me to OUCH. It was a a Eureka moment and a oh crap moment too. I thought I had got rid of them when I quit smoking a few years back but now I'm smoking again and the bitch is back. I don't know what to do

[richardblissett]

I have been suffering from cluster headaches since my final year of university (I am 38 now). Even though i explained the periodic symptoms and the cluster episodes to various GP's I was told it was migraine and I've been taking migraine medication with little success. Thanks to a podcast episode of "How migraines works" I realized what I had been suffering was not migraines but Cluster Headaches! Now hopefully I can find alternate medication that may actually work!

Thanks OUCH!

[grimezy121]

To all of you who suffer from these terrible attacks, research I am currently involved in has shown that up to 90% of attacks can be aborted within 20 minutes with the use of psilocybin or LSD, and that taking a dose once every three months has been successful in completely keeping the attacks in permanent remission for roughly 75% of the people being tested. There is currently research going on with the non-hallucinogenic 2-bromo LSD to see if it has the same effectiveness.

[mdiconti410]

This is a great video except his facts are off. Its far less common than 4 for every 1000.

[alteredgrind]

this is terrifying :( good luck to everyone out there who suffers from this

[bleetbleet100]

@alteredgrind find me on facebook paul bannister/profile pic is a globe of the earth made up of other peoples pics

eposotic sufferer

[rightirishlass]

These are exactly what I get....i've had them for around 8 years episodic. I just use Propranolol for prevention when the bout starts, and then Migraleive, Ibuprofen and Sumatriptan Succinate tablets when the pain begins...usually last between 15 minutes - 4 hours. If anyone is doing any other documentaries I'll be involved !! I've always wanted to try Oxygen tanks but there is no funding for them where I live through the NHS. .

[zachary0515]

i'm 13 years old and i get cluster headaches on my left eye and i was wondering why does it happen the same time every day?

[jjuk69]

@zachary0515 @zachary0515 Hi Zach. People suspect the hypothalamus which controls the body clock. This also explains why seasonal changes can bring on a cluster. There's a LOT of information on ouchuk.org, please check it out :)

[bleetbleet100]

@zachary0515

I hope the doctor gets you seen to by nerologyst imidiatly as i suffered most my life with no help.oxygen is a must /note the time exactly and take oxygen every day five mins befor .

hope this helps

be healthy and eat good foods /dont smock cigerets/dont drink,espeshly spirits and red wine as also red wine headack/hang in there

[itsmecarl25]

@zachary0515 yah im 18 i kno how u feel be strong.there young ones like me also.

[hEaDoNtHeBlOcK]

I'm an episodic lefty :) Diagnosed and suffering for 12 years. I suffer for around about a month and a half a year. I was initially prescribed Sumatriptan injections but I found them incredibly strong and as they only come in 2 doses I found they weren't a reliable source of medication (I often have 4-5 attacks a night).

I am currently experiencing a fairly severe bout at the moment and I have just been prescribed the nasal spray.....anyone tried it? Am I better off with O2?

[jjuk69]

@hEaDoNtHeBlOcK The nasal spray takes too long to work, the preferred (and licenced drug) for CH is Imigran subject (injection) 6mg. There are currently trials with 4mg Imigran jabs which would allow people to inject 3 times a day instead of 2.

[bleetbleet100]

@hEaDoNtHeBlOcK /i suffered most my life episotic and no help untill several years back,i tryed suicide several times but failed, it took most my life untill the doctors sent me to nerology where i was diagnosed straight away,oxygen helps and break sumatriptain tablet up into several peices  and take throughout the day

[abc1155]

@hEaDoNtHeBlOcK you most definetely should try O2! it has worked wonders for me. i still carry with me good old sumatriptan but ike you said, the thing is so strong it's sold in packs of 2. nevertheless, you must have a stock of it at home, all you need is a doc to issue the prescriptions. taking too much of it can be dangerous but since you have it for "only" 1.5 months/year it shouldn't be a problem. also, as a preventive treatment, you should try verapamil (240mg, divided in 3 doses daily)

[ClusterHeads]

@hEaDoNtHeBlOcK I found the shots only cause side effects,also lots of rebound headaches.

[ilyalicebtoklas]

The biggest issue I and probably most people face is the apathy of people we come into contact with daily. I have walked into work many a time falling down tired having been up all night or bleary eyed from a bout that morning only to be greeted with "whats your problem?" People dont realise or just plain dont care. If you waled in with a finger hanging by a sinew they's show concern but a CH just has no visible signs and they dont care...

[ilyalicebtoklas]

I am a long term Episodic sufferer 33 years now. I am currently in the middle of a bout and can holeheartedly recommend a visit to the Ouch website. Having gone undiagnosed for 10 years and effectively self diagnosed and medicated myself for the last 20 years support from your peers is more usefull than anything the NHS can provide.

If you are a sufferer Oxygen is the big answer of for me and the only effective cure when an attack comes on. Ask your doctor for it and push push push!

[jjuk69]

@ilyalicebtoklas. Unfortunately this tale is much too common. I'm not sure of the numbers, but a good percentage of CH sufferers are self diagnosed. Personally it was the same - I was diagnosed by my GP with 3-4 different headache types before I self diagnosed with CH and a neurologist confirmed my findings.

OUCH has been instrumental in raising awareness of this condition.

OUCH have literally been a life saver for more than one CH sufferer.

[ady34]

It's £55 for a pack of 2 imigran injections, thats why the NHS wait until you pay private to prescribe it xx

[jjuk69]

@ady34 Try the following with your GP. Ask him if he is refusing or reluctant to prescribe the injections based on cost. If he says yes (or even if he doesn't!) you can go to your local PCT. GPs are not allowed to refuse any treatment or prescription based on cost.

[Socratease1]

Head ache is total misnomer, from what I see in what happens to my wife the description of a severe seizure would be a heck of a lot more applicable!

[dunskie]

Glad to see this horrible rare condition getting some attention. The pain is impossible to even put into words. Like someone has jammed a screwdriver all the way into one eye, and then keeps doing it over and over for an hour. They shouldn't even call it "headache".

[northface131]

All must know if you have the tools to abort clusters, they should be taken at onset immediately. Hit that O2 tank hard or inject the sumatriptan at the FIRST sign.

[jjuk69]

@northface131. Very good advice! Do not wait for it to take hold, when the eye pain/runny nose starts, hit that tank hard!

[bleetbleet100]

@jjuk69 agreed

[ilyalicebtoklas]

@northface131 Since I have used O2 I can abort an attack even when I am well into it. Triptans need to taken as soon as the tingling starts and the 15mins my tabs took to get into my system was just too slow. I can't do needles so injections would be a defo no no for me. I used O2 this morning having driven in to work in full CH and endured it for a good 10minutes at about 70% and STILL stopped it within 5 mins. It really is a miracle for me having suffered for 33years.

[beauar]

I get CH as well. Mine are not chronic thank god. I get them for 2 months a year. Only on the right side. My doctor put me on Topomax and it does help....but still not 100%. The pain is unreal sometimes. Hang in there. See your doctor and never give up hope. I also find a hot shower can help provide some relief

[gothmikael]

i've had CH's since i was a teen they used to be just for a few weeks a year but now thy have gotten far worse, im now in cycle constantly and have had just 18hrs headache free time in the last 3 years. The pain is unimaginable the sensation of something trying to force its way out of my eye socket or a corkscrew coming through my eye , 1st the doctors tried to refuse me any pain relief other than paracetamol, But after a year put

me on verapramil and sumatriptan tablets....

[gothmikael]

which did nothing, after suffering through that for a year i was put on to the indomethicin but still refused sumatriptan injections on the grounds that they would be to expensive. after a battle with my pct i finally got the injections about a 2 years ago, they help but as you can only take a maximum of 2 a day its not the best solution when like me your having on average 12 headaches a day,

[gothmikael]

so its about prioritising them i use my injections on the longest ones one around 3pm and another in the small hours. the other thing ... See Morethat has taken its toll on me is the fact that i can only sleep a maximum of 3 hours any longer and BANG another headache and my cycle goes out of whack. so its been 3 years since i had any sleep longer than 3 hours or a day with out this damned demon trying to get out of my eye.

[gothmikael]

AND the FUNNIEST thing is only this year did my 5th neurologist finally conceed i had chronic CH and yet again im changing meds.

i feel for anyone with this completely debilitating condition and to anyone out there who is chronic i say this we will overcome this.

I WILL WIN. THIS THING WILL NOT DEFEAT ME NOT YET!

[hobbsyboy]

This is reason why Im doing the London 10K run. Love you mum xxx