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Has anyone had experience trying Lyrica (Pregabalin)

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Steve

(Member)
From:
7 total posts
Not currently suffering :D
After 20 years of attacks that occur every 13-15 months and last 3 months at a time, I'm currently suffering again & this time it's a very bad cluster. Maybe it's because I'm getting older, or that I mysteriously skipped last year's cluster but this time seems much worse than ever before.
I've never tried many medications because having done a lot of research & reading of other people's experiences, I have a feeling that nothing will really work (I keep reading that people manage to get relief or abort an attack after 15-30 mins by taking certain drugs but how do they know since most (of my) attacks only last 15-30 mins anyway?). Anyway, I saw my Dr yesterday & he prescribed Lyrica (Pregabalin). I'm really reluctant to try it since it seems like grasping at straws (but I guess I'm at the miserable stage of trying anything). So, does anyone have any advice or experience with this drug for CH? Thanks for reading, any help is appreciated.
Steve in Brisbane
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Peter Yarrow

(Member)
From:
10 total posts
Not currently suffering :D
I have tried Lyrica for clusters and it did nothing for my attacks, possibly worsened them.
My understanding is that these AED (Anti-convulsant/Anti-Seizure-Epileptic Drugs) are used by Drs off-label for nerve pain. They need a reason for the prescription, and I think nerve pain is an approved use which is kind of vague when it comes to treating clusters.
It is probably your Doctor clutching at straws as you say, many do this with Gabapentin, Carbamazepine and a few other drugs from this group used for pain management. A GP should be referring to a specialist for supervision as GPs don't generally carry out the kinds of testing and monitoring required for the use of these drugs in cluster.
There are very few tools available to GPs to manage cluster headache and when they go it alone they can venture from general practitioner into specialist territory. Good on your Dr for trying and more of them should try, but a specialist referral should go hand in hand with this type of prescription. If I recall, the success rate is low in headache for most of this drug group. Blood tests are a good idea when on these drugs.
Of course YMMV.
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Scoot

(Member)
From: Murwillumbah
13 total posts
Currently suffering :(
I'm on 75mg lyrica ( 1 three times a day ) for back pain. I am currently having my 2 yearly bouts of ch's and it doesn't do anything for me in regards to my head. Not sure it does much for my back pain either to be honest.
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Kim

(Member)
From: Victoria Park
89 total posts
Currently suffering :(
Hi Scoot,

on the back pain, i was on 75mg lyrics twice a day, didn't do much.

my doctor increased it to 150mg twice a day and it worked a treat.

kim
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Scoot

(Member)
From: Murwillumbah
13 total posts
Currently suffering :(
I went on 150mg to start with Kim but couldn't function on them. They would just put me to sleep lol.
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Myheadhurts

(Member)
From: Southport
2 total posts
Currently suffering :(
I can't issue a warning that adequately describes the danger of this drug. Besides that, it didn't work for me at all - even at 600mg per day (titrated very gradually over a year), it had some very disturbing side effects.

Blackouts resulting in loss of up to 8 hours at a time where I had no recollection of what I did or where I was, and during this time I was babbling incoherently; nightmares; hallucinations; loss of control of my limbs and body in general - it took me an hour to call for help once because I was too shaky to press the correct numbers on the phone in the right order. During that incident, I was on my bed unable to crawl, much less walk, and I was lying in a pool of my own vomit. Significant vision impairment and balance problems.

I have a friend, a very sane family man, who was prescribed Lyrica without being advised of the necessity to increase and decrease the dose very gradually - 25 mg per two week period from memory. He was prescribed a dose which was too high, then after he was distressed about the side effects, he discontinued the drug just as suddenly. Without going into too much detail, he ended up behaving so violently that his wife and kids had to leave the house for a week or so, and he tracked down and threatened other people in his life with a hachet. This was inconceivablly out of character. I know of other people who have suffered similar situations when using this medication.

I know different drugs affect different people in different ways. Some drugs work for some people and not for others. Some people have side effects and some don't. I wouldn't normally write a post this negative, however I don't know anyone who has had pain relief from this drug, and I know several who have experienced these distressing side effects to a major or minor extent.
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