Posted by Graham (195.92.194.19) on August 27, 1999 at 21:45:08:
I am writing this message with the hope that someone can confirm my suspicions that I suffer from chronic cluster headaches. I am, at present, waiting to see a Neurosurgeon about my condition. However, as I live in England where the waiting list to see a specialist is longer than the River Nile I expect to be waiting a long time! PLEASE TAKE THE TIME TO READ THIS AND GIVE ME YOUR OPINION.
I started with my headaches around four years ago (age 22) when I gave up work to go to university (I will describe the headaches later). At first I got them around two days a week, with the odd week headache free. I wasn't concerned with them at first because they were fairly short in duration, and I thought looking at a computer screen for much of the day was the cause. Then, over the course of the year they became more frequent, both in the number of days I got them, and the number I got each day. It got to the stage where I was getting between 2-6 headaches per day. I began to think that it was the stress of university that was causing them (late nights doing assignments, late night working, worry, stress . . .etc), but they continued during the summer holidays when I had around 11-12 weeks off and felt relatively stress free. Eventually I decided to have my eye's tested, just in case they were the cause. My eyesight was fine! I also began to notice that I got headaches just about everytime I drank alcohol (just my luck!). After that first year the headaches became fairly consistent in number, severity and duration, apart from the odd good week when I would just get the odd one or two (excluding the alcohol induced ones!). They have continued in the same pattern up to the present day (I will explain the pattern in detail later).
Over the past three years I have tried many different forms of alternative medicine (costing a small fortune) to get rid of them including Acupuncture, Aromatherepy, Chiropractors and Herbalists, none of which has worked. I have visited my local doctor (on and off over the past two years) who has told tried treating me with physiotherapy, beta-blockers, Zomig tablets, Inderal, neuralgia treatments (Tegretol) to name but a few- all of which had no effect. He has changed his mind on numerous occasions as to the cause of the headaches, then eventually when he ran out of options and drugs to try on me, he eventually referred me to a specialist of general medicine (not a neurologist) at the local hospital. He also had no idea but tried me on some vascular drugs, which I think were for migraines, that I had not tried. Suprise-suprise, there was no improvement. He then sent me for a brain scan a couple of weeks ago. I went for the results a couple of days ago and nothing showed up. He has now put me on Amitriptyline (which is an anti-depressant that helps tension type headaches-I think!!) to see if it helps, and referred me to a neurologist. I should get to see him by the time I am thirty!!!!
I did ask the doctor at the hospital whether I was suffering from cluster headaches (because I had done a little headache research over the years), but he told me that I had suffered from them for too long without a break for them to be cluster headaches. However, since finding clusterheadache.com and doing further research I increasingly believe that I have the classic symptoms of chronic CH's.
Therefore, I would very much appreciate anybody's thoughts on my symptoms.
NOTE: The headache symptoms are quite complex, due to the fact that my alcohol consumption influences the number and severity of my headaches. Ive also grouped my experiences of the headaches in bulletin fashion to make them easier to write (for my own purposes), and understand (for you the reader).
- My headaches start with a dull ache in my left temple area. After a short period of time (around 5-10 mins) they intensify and become an EXTREMELY strong pain in my left temple area and behind my left eye. I also experience pain in the left-hand side of my neck, to such an extent that I often wondered whether I had a problem with the bone structure in my neck (i.e. bones touching a nerve. . . .or something!!!!). My upper jaw area can often start to hurt and I sometimes get twinges of pain in the back of my head (left hand side again) and in the left hand side of my throat. My left eye becomes red and tears start to flow from it. My left-hand nostril becomes runny and I often become hot and flushed. I never become nauseous but I sometimes begin to cough and snivel.
- The headaches usually last on average 45-60minutes. However, I can have very intense headaches for up to two hours and minor ones for ten to fifteen minutes.
- The headaches are not so much ache like, but more of a pain. Throbbing and shooting pains will often occur across my head, and the veins across can temple and eye area become prominent to touch, with my pulse easily felt.
- I get between two to six headaches a day, varying in intensity. I would say that 20% of my headaches are complete agony, 40% are EXTREMELY painful, 20% hurt (but I could live with them), and 20% are a slight nuisance.
- Painkillers do not work (not during a headache but taken in anticipation of one!-they never relive one!). I can take all sorts of painkillers (aspirin, paracetomol, codeine, ibuprofen and syndol) for PREVENTION purposes, but I still get the headaches.
- On Fridays, Saturdays and Monday's when I drink alcohol I always get a headache, and they are usually good one's. In fact, whenever I drink alcohol I usually get a very painful headache within an hour. Because I like to drink socially with my friends on the aforementioned days I usually consume a small amount of alcohol around two hours before I go out. This means that I get a mind-blowing headache around an hour before I go out, BUT after that I do not get another one for around 20 hours.
- Alcohol is my only relief. Yes, it does bring an extremely painful headache on, but it prevents them the next day. IMPORTANT QUESTION: Does anyone else experience this strange effect? Alcohol triggers a headache but prevents them the next day? If I don't drink ALCOHOL (and Ive given it up on several occasions for up to a month!!!!!!) I JUST GET MORE HEADACHES!!!!
- I also get major attacks of headaches when I am on holiday from work. I get quite a lot of holidays due to the nature of my job. When I go on holiday and I am far less stressed, I tend to sleep more and lazy around. When I try to lie in on a morning and not get up I am plagued with headaches. When I am working, and getting up early each morning I suffer less!
- The pain is very annoying. When I get a strong headache there is nothing I can do. Strong lighting, loud music and temperature do not initiate, relive or prolong my headaches. I pace around rubbing my eye, temple and neck but nothing helps. I often find myself pacing my around my flat asking myself what I have done to deserve them. Ive also found that beating my head against hard objects does nothing either. Though I still do it!!!!!!
- I never seem to get a headache when I am exercising at the gym or jogging or under stress (due to my job). They only seem to come when I am relaxed or at ease.
- THEY NEVER GO AWAY. I may have the odd week when I get less than usual (maybe one a day not counting the alcohol induced one's), and there is the very odd occasion when I drink alcohol and don't get one. The only time I know for definite when I wont get one is when I have drunk a fairly large amount of alcohol the night before.
I could go on but you maybe getting the picture by now. Please could you comment on my experiences. I would particularly like readers to answer the following few questions
1) DO YOU THINK I SUFFER FROM CLUSTER HEADACHES? IF YOU THINK NOT THEN PLEASE TELL ME WHAT I MAY BE SUFFERING FROM.
2) DOES ANYONE ELSE EXPERIENCE THE SAME EFFECTS OF ALCOLHOL? I.E. IT TRIGGERS HEADACHES BUT RELIEVES THEM TOO?
3) IF YOU THINK I SUFFER FROM CH'S IS THERE ANYTHING I CAN WITHOUT THE ASSISTANCE FROM A DOCTOR TO RELEIVE THEM IN THE SHORT TERM? I MAY BE WAITING TO SEE THE NEUROSURGEON A LONG TIME!!!!!