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(Message started by: sleepyslug on Feb 26^th, 2003, 12:38pm)

Title: Newbie
Post by sleepyslug on Feb 26^th, 2003, 12:38pm

Hello everyone,

I am quite new to all this and was hoping that you could perhaps help. I am fortunate enough not to suffer the horrendous clusters that most of you have but do seem to fall into the CPH category (although I am episodic). These started about August last year and have occurred roughly every 2-3 months. I get short, stabbing pains frequently throughout the day in bouts that last about 3 weeks at a time. The fun started again the other day and I am having the worst time yet.

My GP has been very good and I am currently taking a concoction of Pizotifen, Indomethacin and Co-codamol. This has helped reduce the pain but I now feel like a complete zombie and performing the most basic of motor skills is a struggle! I have also had problems with the Indo resulting in rebound headaches which have had me on the floor screaming in agony.

I am a 25, female from the UK. I would be so grateful for any advice and would love to hear from anyone who has suffered from similar experiences.

Thank you in advance. x

Title: Re: Newbie
Post by Roxy on Feb 26^th, 2003, 1:12pm

Sorry sleepyslug...wish I could help you :-/. All I know about CPH is that I don't have it.

Maybe some others have more info.

Tracey

Title: Re: Newbie
Post by ave on Feb 26^th, 2003, 1:59pm

Hello Sleepy, Indomethacin should work for your CPH. I am not knowledgeable about the other stuff.

Why don't you try the British OUCH forum? Try this,

http://www.clusterheadaches.org.uk

or check the button saying headache links.

The people there may be able to steer you toward other docs, and know all about NHS practices.
Good luck

Title: Re: Newbie
Post by Ueli on Feb 26^th, 2003, 2:39pm

Hi Sleepyslug,
You write "I get short, stabbing pains frequently throughout the day". Unless "short" means 5 to 15 minutes, this does not sound much like CPH (or EPH). Besides a closer description of the duration, the number of attacks and a where exactly the pain occurs would be helpful. Short (measured in seconds), but extremely painful jabs would rather point to Trigeminal Neuralgia (TN). The TN attacks are often trigger by external stimuli, like touch, chewing, brushing the teeth; do you have such triggers?

You say your GP has been very good, but to me it looks he has little idea what you suffer from and rather takes a shot in the dark with this med coctail.
Indomethacin would be the treatment of first choice if you had EPH. Altough Indomethacin can be very upsetting the stomach for some people, I've never heard that it causes rebound headaches.
But Co-codamol (paracetamol and codeine phosphate), as almost any OTC pain killer, can do some nasty rebounds if used on regular basis. Codein, being a opium derivative, can make you stupid. As it has an addicting potential, it can cause rebound headaches.
Pizotifen is basically an appetizer and mood enhancer, doing this by messing with serotonin and other neuro transmitters. It does have too some success in preventing migraines. But your description doesn't mach migraines at all.

My suggestion: Try to convince your GP that you need a referral to a neurologist, if possible one specializing in headaches.

Good luck,
Ueli

Title: Re: Newbie
Post by sleepyslug on Feb 27^th, 2003, 5:17pm

Hi Ueli,

Sorry I wasn't too specific in my first posting but I didn't want to bore everyone by droning on!

At the moment I am experiencing what is now normal every 2-3 months. I get the most horrific pains, often in the side of my head, towards the front but occasionally at the back of my head. The pain itself can last up to 30 mins or be as little as a few minutes (when it is bad, my eyes water but I think that might be due to me wincing!). It is usually a stabbing pain and can then go on to feel like the most exteme, pressurised ice-cream headache (hope that makes sense?). Then as suddenly as it starts, it can stop. I can then get a dull ache for a while and then the intense pain will come again. This continues in no apparent pattern. It normally lasts a few weeks like this, causing me to feel constantly exhausted and frustrated.

I have attempted to identify a trigger and cannot pinpoint anything. However, I have found that during a bout, even the smallest amount of alcohol can make it dramatically worse.

I do agree with you re. my doctors. I meant that they have been good in that they are eager to help but have myself been concerned by the way in which they have perscibed so many drugs. I was initially given a few different migraine medicines to try which made no difference. I was given Indo which did make a slight difference but after about a week, I suffered 3 terrifying attacks which lasted about an hour and a half. It was after this that the doctor gave me the co-codamol to use mainly and to cut down on the Indo. You are right -this makes me feel like a complete space-cadet. The Pizotifen, as far as I can gather, has achieved nothing.

Unfortunately, my doctor has now left the profession and I am now faced with a new doctor who just talks about migraines and perscribes migraine meds, he appears to be getting impatient with me because these aren't working. I do not feel sick and my vision is not affected with these headaches.

I am now at the end of the first week of this and am so drained, there sems to be no relief.

I would be really grateful to hear whether anyone else has ever experienced this or heard about anyone who has.

Thank you for your time,

Sleepyslug x