Have had Migraine Variant balance Disorder probably for most of my life but really kicked in 22 years ago. Was misdiagnosed as having Menieres/endolymphatic hydrops for 15 years and basically left to get on with it when Serc didn’t work and was told my body had compensated as much as it would.
I’ve mostly tried to get on with life by contracting it - no alcohol, caffeine etc, regular sleep, quiet life but have often had to take to bed for up to a week at a time. 6 years ago I went through hell for about 4 years as I developed chronic migraine on top of it all but seemed to come out the other end only for my dizziness 9and associated symptoms - ear fullness, heavy head, ear ringing, blurry eyes etc to start getting worse - you get the picture). 2 months ago I woke up with the worst symptoms ever and apart from dragging myself to the GP 3 times haven’t been out of house and mostly not out of bed. GP has been useless -w on’t refer me to ENT and has asked what I want to do? He prescribed stemetil then serc and then cinnarazine - all anti dizzy meds I’ve had numerous times before and haven’t worked (also react badly to stemetil) and then wanted to talk about a low mood drug.
Anyway, privately finally went to see Dr Surenthiran last week who has prescribed Pregablin (not sure what dose I’m meant to ritrate up to as I was exhausted and disorientated by the end of the appointment - will have to phone for clarification). The GP was seriously freaked by this when I took him the private prescription and clinical note. He said they no longer prescribe Pregablin at the surgery as it so addictive and difficult to wean off with awful side effects and has been implicated in so many deaths. He reluctantly gave me a prescription for a small amount (as he waits for Dr. S’s longer letter with more info and says “he may” refer me to Medway NHS clinic). GP knows I’ve not been able to work for a long time (self employed due to condition) and am relying on savings and that I’m looking at selling my house in the next few months and feel quite hopeless/stressed about it all. He has now terrified me about taking pregablin.
Please if anyone has experience of taking it - I’d really like your take on it
Oh dear. First, despite circumstances the have driven you here. Welcome anyway. Come and join us. Think with your medical history you pretty near qualify for a Life Membership on what appears to be your first day!
What a grim time you are having. It’s such a pity UK NHS (I’m assuming here?)just isnt joined up. I’ve found this myself time and time again. GP didnt have much by way of reassuring words, he did. Quite the contrary. Hopefully once ‘the letter’ reaches him it’ll all sort itself out. Cannot recall anybody actively taking “Lyrica’ (Pregablin) but if you use the Search facility (magnifying glass) on home page you’ll find alot of historic but still relevant posts referring to Lyrica. This site’s international so with time zones you may receive posts from current users in due course. Alot are still in bed! From memory it’s similar to gabapentin. Happened to read only yesterday it’s much more expensive than gabapentin. Don’t know if that might figure in any equation, NHS being strapped for cash but that could just be the cynic in me escaping again. Ultimately I suppose as the GP is your care provider responsible for management of your condition supposedly he could refuse to supply but its unusual for them not to apply with consultants. Dr S is pretty renown so suppose he had a reason for prescribing as he did. Guess failing all else you’ll have to contact his office. Do let us now how it eventually resolves. We’d be interested to know on here I’m sure. All the best with future treatment. Hope it works for you soon.
Thanks for the reply and for the warm welcome.
Pregablin is like Gabapentin - a kind of updated version. I have have taken pizotifen, propanalol and amitryptiline over the past 6 years (had some success on ami)but was only prescribed these when I had “proper” migraines at a migraine clinic but usual NHS I was discharged as my headaches had started to improve a bit.
I guess this was the next level of drugs. Dr S says that because I’ve had MVBD for so long and my brain stem has become so irritated that it’s like a nail that has been driven in hard to a piece of wood - so no easy feat to get it out and heal. I suppose my brain needs a good coshing. Dr S was about to prescribe me gabapentin but changed his mind - he said Pregablin is great for anxiety as I had mentioned that lately I have become anxious in shops, at the dentist, on public transport etc even though I know it’s illogical.
Pregablin is more expensive than Gabapentin but the price has come down a lot recently as it is out of patent so the pfizer brand Lyrica doesn’t have to be purchased - the pharmacy have given me a generic. I’ve been reading up on it since the GP has scared me and it has been implicated in a lot of drug deaths. It’s very popular with addicts who add it into their mix. The nearest prison has banned it - new prisoners on it have to be prescribed other drugs. It’s nickname is the “new valium.” A lot of people take it for pain (after accidents etc) and there is evidence that it is highly addictive. I also found a super scary youtube video of a guy slurring his words and in a bad state who is trying to wean off 600mg a day. However, I have also read about people for whom it has transformed their life with neuropathic and nerve pain, anxiety or epilepsy - not read about MAV success much.
My husband says I should trust the advice of the best Dr in the UK for MAV rather than a GP. I just didn’t ask enough questions as the prescribing came at the end of appointment when we were over time and my brain and balance were mangled from all the balance tests and answering lots and lots of questions - I’d just had enough and could barely manage to sit in the chair.