I have today done my own self diagnosis after a worrying 6 months of mysterious headaches and several visits to a pretty much useless GP. I was starting to believe I had a brain tumour. The GP did a blood test all ok, took BP okish, and suggested I had another eye test... again all fine. I have never suffered from headaches at all during my life. I am 58. Last September headaches started to become a daily phenomenon. I thought the chiropractor would sort them out, but she wasn't able too. I assumed I was tired and they would go away, they didn't. I thought my change of job maybe causing stress, it wasn't. Every other day headaches, the most vile sharp horrendous blinding pain immobilising me from 10 mins. to up to an hour. Sometimes they wake me at night or I awake with one in the morning. They are always on right side of my head and behind the eye. A friend said I had migranes but I wasn't convinced, these were worse than a migrane as when one came on from out of the blue I had to shut myself in a room so I could put my head in my hands and suffer the excrutiating pain. I would be interested to hear from any other sufferers of cluster headaches.
Cluster Headaches...: I have today done... - National Migraine...
Cluster Headaches...
Come in to see one of our doctors for a diagnosis and treatment plan. If indeed you have cluster headache, these are treated very differently to migraine so it is essential that you get an expert opinion. Visit our website or call us on 0207 251 3322.
My GP hasn't diagnosed this, I did it myself on the web. I know this may sound extreme, but I rang the MacMillan Cancer Support earlier today because I thought I had symptoms of a brain tumour. I had never heard of cluster headaches and they suggested this is what I may have. But I do need an expert opinion - are you based in London?
Hi Rebecca, It will be difficult for me to get to London is there no one more local to where I live who can diagnose me properly? I live in Southampton.
Yes we are, visit the website to find out more about us. We have over 32 years experience as the only charity providing treatment for suffererers of headache and cluster headache. Being that cluster headaches are so severe and come intermittently we always prioritise these patients for appointments so please tell us when you call so that we can fit you in as soon as possible. We hope to see you!
Hi there Harveywallbanger
Dear really very sorry to hear that you also became part of the community of cluster headache sufferer
Well I am suffering since 1995 till date and thanks God that it is episodic and comes during the months of May to August and rest of the year I am fine.
Man what to say other than that the life is a living hell during these months and I also dump myself in a dark room and cry like anything as the pain is really unbearable as you can understand. The attacks last for 3-4 hours and sometimes two attack per day and sometime one attack happens.
I have tried everything during these 17-18 years and nothing works and one has to bear it with no choice to escape.
Someone of the cluster headache community (You are also a part of it now) just said that Sumatriptan injection works, I Don't know as the pain is to start during the months of May to August.
This cluster headache attack started while I was studying for my Ph.D. studies in USA and had a vehicle accident and Dr said that I have to live with it for the rest of my life as no cure is available till date.
This sumatriptan injection is not available in my country but the tablets are available so lets hope that CH may not start or if started, I will try this sumatriptan tablets to see how they work.
Oxygen therapy works for just to postpone the attack for a couple of hours but the attack that wanted to come will come anyway so I quit using Oxygen.
Best of luck dear and really really sorry for this and pray that God Almighty may give you the courage to handle the situation.
"Oxygen therapy works for just to postpone the attack for a couple of hours but the attack that wanted to come will come anyway so I quit using Oxygen. "
This is such a true statement. Cluster Headache is insidious in that it seems to have a will of its own. The more you try to prevent an attach or relieve it then the more it increases its assault. It is almost as if you have to accept that an attack will come and you just have to go through it at some level.
Sumatriptan gives me relief and the first time I injected it was like a miracle. But, I can only use twice a day and I get cluster attacks during a "session" three or four times a day. But 50% relief is good for me. Thankfully my incidence of attack is relatively infrequent compared to other sufferers. For this I am truly grateful.
HI,
I was in a similar situation.
Agonising pain, mine starts 2am, no help from the Doctors locally apart from "take an aspirin"
Being asthmatic I can't.
My wife found I had CH.
I was on the brink of letting CH live up to it's name of the "suicide headache"
Get properly diagnosed and be aware of groups on Twitter & Facebook.
It helps to talk with people who have gone through the same pain you are. It really does.
Andy
Hi Andy, thanks for this. Yes my GP is useless. I also have Aspergers and Tourette syndrome and now with this sometimes feel I can't stand much more. I work in an office, and concerned this will impact my job, it already is as I've had to leave early or go into a room and sit on my own praying the pain will go away. My colleagues think it's stress I told them I don't carry stress in form of headaches, but could tell they just thought I was being melodramatic!
I have had Cluster Headaches since 1970 but they were only diagnosed in 1999. I only accessed proper relief with Sumatriptan in 2000 so spent 30 years just handling the pain myself. My opinion of GP's is consequently of a very low order. Some of the stories I have of my encounters with them are horrifying in my opinion.
One of the big issues is that they actively dislike a patient knowing more about the condition than a "medical expert". What is essential for all of us is to stand up to our doctors and insist they research the condition. Professor Goadsby at the Neurological Institute is the main man and a staunch advocate for sufferers. His position is that as female sufferers describe the pain as "worse than childbirth" then cluster headache represents one of the most painful conditions known to medicine as a sufferer can be going through "pain worse than childbirth" three times a day without pain relief.
Regarding the reaction of those around us who do not suffer from this condition, well that's what prejudice is! As the pain has no visible physical symptom all too often "lay members of the public" react to us as "drama queens". Oh to give them a good forty minute taste of a full on cluster headache! Get your work place colleagues to look the condition up, get them googling and then get them talking about it. That is the best you can do. Start by sending them the links.
Reading this sounds like my mothers story!! Good idea that people should know what you are going through. I think people see it as "just a headache", my mother has an employer question her time off work and asking her if she "was really ill" as you say let them have 40 mins of it and tell us if they could work!!!
Ha ha ha
Wonderful dear
You are right. Let them have it for sometime and they will never ask any one in this situation that is he ill
hay there
Like I said earlier that I got this CH while I was doing Ph.D. in USA and had a vehicle accident. Dr said that I have to live with it for the rest of my life as there is no cure available till date. this year the pain started as usual on 5th June and was supposed to end on 10-15 august (It is episodic in my case). The time of pain start was 5 am and 11:30 am. I used to look at the watch for the pain to come as this CH is very well tuned with the biological clock of human body and comes at the same time every day like if my watch is not giving the correct time, I could correct it with the start of the pain without a minute error.
Don't need to mention the intensity, and I suffered for one month waiting for August 10-15 for my freedom from this situation. During the CH cycle this year, I begged GOD to take my life before I take it my self, as the pain is too much to handle anymore after these 18 years.
A friend of mine said that you have tried everything during these 18 years so why not try religious person to help you. I went to a local Alim/priest of Muslims (like father in church/Christianity) who deals with evil spirits. I went to a person and told him that I am suffering with this for the last 18 years and the name of disease is cluster headache.
He said that you are looking for medical help and If it was a medical problem, the doctors would have found the cure as after Dr H B Horton paper in 1932, this problem is well known to the human society.
He said that this is an evil spirit problem and medical will never b able to help.
He said to me to look into his eyes and after 5-6 seconds he said that I can see Evil spirit in your brain and not a problem to force them out.
He put his hand on my head and recited something in his mouth for 30-35 seconds and said that they have gone. Man I kinda laughed inside, NOT BELIEVING, as I was suffering since last month and the last attack was some 4 hours ago with the pain, not to mention the intensity of C H.
I went back same day to my university as I am Dean of faculty of agriculture and was needed at university. The attack came as usual at 5 am but it was not in the brain but the eye boll was about to burst with extreme pain.
Again went to the priest and told him the situation and he said no problem. He put his thumb on my eye and again took some 30-35 seconds and said OK GO (This time I believed him).
I came back to my university and the attack came as usual at 5 am but this time both eye and brain were silent but there was extreme pain on left side of my face.
Again visited the priest and he again did the religious thing and I was out of this CH cycle that was supposed to go till 10-15 of August, just stopped like it never existed.
I am the happiest person on planet earth and wish best of luck to all the CH sufferer
Hi my mum and brother suffer and both use the injection and it works! you can only take 2 in 24 hours, so the oxygen helps to postpone the headache till you can take another injection. They also take steriods at the peak and this seems to help. My mum has had these for over 40 years and has finally (the last 4-5 years) got it under control!! Which has helped my brother as he has only has had these for 3-4 years, but it takes take alot of going on at the doctors to get the injections and people realising they are not just a bad headache!!! Hope this helps as I see how much my mum and brother have suffered through the years!
Amanda
HAY AMANDA
Yes It is just not a bad headache
It really lives up to its name of suicide headache
If people have had not suffered the pain of CH, They really can not understand the magnitude of the restlessness that a person suffers while going through the cycle of cluster headache
As mine is episodic and starts during the months of May to August so If mine started, I sure will try this Sumatriptan tablet to see if they work for me.
Best of luck with your mom and brother and be really sympathetic with your brother and mom while they are in that condition
Just a message from my mum the tablets take a long time to work and the injection works with in about 5 mins. If you can push for the injection as this does able you to carry on with normal life. The oxygen along side does help if you get more then 2 headaches a day?
Amanda
Thanks dear, Thanks to your mum for the information but the injections are not available in my country and even the tablets are to be imported from dubai and UAE so I have no choice but to try these tablets.
Oxygen I tried for two years but it just postpones the CH, does not stops and the pain comes back within an hour or two. As my pain starts from May to August and The May is in the middle and the pain has still not arrived at its place. I am silently sitting with my fingers crossed, hoping this year may pass without the pain (BEST OF LUCK MUSTAJABAK: O O O Thanks dear)
Would note that there is some reluctance from some GP's to prescribe the injections. INSIST. The level of pain with Cluster headache is such that it is UNETHICAL for a GP to not prescribe the most effective treatment. This, I believe, is the opinion of the leading research team at the Neurological Institute.
So don't push, insist and if you are not listened to then go to the practice manager and complain. The injections relieve the pain in a matter of minutes, the tablets leave you in pain for the majority of the "standard" attack.
Just seen you may not be able to get the injection if you're in a different country. Best of luck
hi ive hsd bad headaches for two years everyday and i know what you mean about suicide headaches i live in the united kingdom just wondering if anybody knows if and where they do yhis in my country thanks chris
some spelling mistakes the injections im talking about sorry forgot to say
Hi, 2 weeks ago whilst on holiday abroad my husband woke at 4 .30am moaning with pain and the worst headache he said he had in his life.
We were both terrified and didn't have a clue what is was, took strong painkillers but it didn't touch the pain. Eventually went after an hour but left him feeling bruised and sore for a while.
Thought it was a form of neuralgia, but on arriving back in the U.K and having another one I did some research. Thought it was cluster headaches but G.P. thought it wasn't.
After 3 days and another 2 episodes, always at bedtime or early hours, followed by 2 attacks within 6 hrs,we made an emergency app. at the surgery.
I'd downloaded info from this site and another to take with us, Immediately his symptoms were confirmed and was prescribed sumatriptan injections, turned out she knew about them as she had another patient with them..
I know they are expensive so was quite surprised, 6 were given and he's used 3 in 3 days.
Took 10-13 mins to work, however I am slightly concerned that he needed 3 over a period of 25hrs.
Ringing G.P. tomorrow for more but wonder if its worth asking about oxygen for the night attacks. I'm also worried that he had an attack at 8.am which has altered the pattern.
I'm praying these will stop soon, can't see us taking a bagful of injection pens on our next holiday abroad.
I also noticed on a forum about cluster headaches that a few sufferers also had restless leg syndrome. My husband has had this for over 35 yrs and copes by taking sleeping tablets.
I am so grateful for the info and support of forums like these.
Like most people we'd never heard of this terrible affliction and so never imagined how many sufferers there are and lives disrupted.
We live in West Sussex - England and both my brother and Mother have the injection.
RobinD my mum and brother have the oxygen which does help incase you can not take anymore injections. They both in periods have to take 2 everyday and this seems to be quite common in cluster headaches. They also are put on steriods at the peak if they are getting more then 2 in 24hrs. It seems it's just trying to juggle the medication for each individual, but it then helps you to carry on with everyday life. Both my mum and brother always carry an injection just incase, as they seem to come on so quick. Hope this is of some help.
Can't believe it!
Picked up more injection pens after having used 4 out of 6. Asked about oxygen but was told it was not necessary yet and to see how how I went on.
That was last Thursday and I haven't had a attack since then.
Ironically I've had a stinker of a cold, and as usual sneezing, blowing my nose constantly and coughing myself sick at times lands me with a near permanent headache, but it is just that and is now clearing up.
I'm not sure if or when the cluster attacks will return, but still carry an injection, just in case.
Hopkinssmith, I'm so sorry to hear about your family's plight, it must be a nightmare having the attacks so often and I wonder how people cope with everyday living.
Glad to hear you've got more injections. Yes worth keeping the oxygen i mind.
Luckily my brother is self employed otherwise I do wonder how he would cope at times. At the moment they both seem to be without episodes.
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