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