Help! Can't cope anymore

I’m at my wit’s end. I’ve suffered with migraines for 16 years both hemiplegic migraine and migraines with vertigo. The vertigo was controlled with Lyrica which DR S put me on. I was also on lamotrigine for the hemiplegic migraines and seizures. The problem is 2 months ago I had to come off Lyrica as my kidneys started to fail then shortly after I had the worst Attack of vertigo I’ve ever had and it’s still not gone. I get one ok day then the next day vertigo is so bad the room is spinning which last 5 to 6 hours and I can’t even turn my head. Dr S put me on pizotifen 0.5 milligrams and my GP has just upped it to 1 milligram. I have only been on it for three weeks but have yet to notice a difference. I have stemetil to try and ease the vertigo but I’m really struggling. Since coming off the lyrica, anxiety and panic attacks have got so bad and I have felt suicidal. I can’t get out of bed without help or do anything I can’t watch TV and can only read for very short periods of time before the vertigo gets worse. I’ve never ever had an attack like this so I’m a bit worried it’s not migraine but I don’t know what else it could be. I’m due to see dr S again on Tuesday so I’m going to ask him for help but I don’t know what else to do. I’ve been on the migraine diet for years and I take vitamin B and B complete and magnesium but nothing is helping.
Has anyone ever had an attack like this that’s different to the usual migraine attack? Normally I get an attack once every month which lasts between 5 to 6 hours and then stops I feel off balance for a few days but it’s settled. I just don’t know how much more of this that I can take as it’s everyday where I can barely turn my head. Has anyone got any advice on what to do?
Also does anyone do vestibular rehabilitation exercises? I can’t even watch tv or read anymore

Sorry to hear you’re having such a rough time. I have chronic dizziness, no migraine “episodes” that come and go with no symptoms between. I have a hard time moving my head without being dizzy, and also can barely read. I feel tilted when I walk, sometimes swaying or like I am being pulled straight down to the floor. Most of the time I can handle TV, fortunately, but that gets very boring as well. I tried vestibular rehab a few years ago when my symptoms weren’t nearly this severe (back when I was still working, driving, functioning) and I never noticed any improvement. After awhile the physical therapist said to go back to the doctor because something else must be going on as his therapy was not fixing the problem & I should have seen results by that time. I’ve been to the Johns Hopkins Vestibular clinic & got a rotary chair test done as well as an ENG and many more tests, and they cannot find anything wrong with my inner ears. I’ve tried many medications but have a hard time tolerating them. Lexapro is next on my doctor’s list for me. I haven’t had much luck with SSRIs though. Tried Zoloft when I first got the dizziness, was on it for 3 months, had no side effects but also no help. Was on low dose Prozac for a few years and that only helped with the light & sound sensitivity. Just wanted to let you know you’re not the only one suffering from something that’s not a “episodic” migraine. Hang in there!

VRT gave me migraines. Useless for this condition imho. Failed propranolol but Amitriptyline really helped. I could not use a computer or watch a TV before Ami. Is very effective in many people because it is a vestibular suppressant. Few side effects and you quickly get used to it. Worked within 4 days of taking it.

I’m 1 year 3 months into the chronic phase but back to work nearly full time and running 5km three times a week. Anxiety is all but gone but symptoms sometimes make me want to curl up into a ball. I’d like to give up sometimes but then you kind of realise you can’t. Hang in there ditto!