Hello! I am new to the site and have had vestibular migraine for one year. I am currently taking 150 Topamax and 30 mg Elavil. I feel like I’ve made progress overall this past year in that I no longer have 24/7 imbalance, and I can watch television for longer than 30 minutes without getting vertigo. However I continue to have very frequent episodes of vertigo at night, usually they don’t even last a minute, but these happen several times a week. How do you get rid of these? I’ve been told it’s not BPPV. Oh and I also have unrelenting head pressure off and on throughout the month. About to give up on the Topamax. Thanks and I’m so glad to have found this forum 
I very occasionally get very small spins, but usually only at night too - I think its something to do with lying down. I’m in the Ami club too, what an excellent med! Works for me at 20mg, although i have varying levels of imbalance from 60-95% of where I was when healthy, depending on the day.
I definitely like the Ami. I felt an instant calm when taking it. I also had the migraine pain and allydonia which Ami has helped. I’m trying to decide if I should dump the Topamax. I’ve been on it for a year and I think it is making me depressed. But my doctor thinks it’s the wonder drug so I’m scared to!
Have you tried to take Amitriptyline on its own before? My neuro wants me to try Celexa. I think that’s because she feels I’d cope better with the condition, though apparently it does things for dizziness too?
I tried Topamax first then Ami, but am thinking hard about coming off the Topamax and sticking with just the Ami. Would you add Celexa?
Very wary of it, so hard to come off and I would not like to stop Ami. However, some board members seemed to have had success.
I’m getting these too now, every morning, but only when I turn to one side or the other (oddly happens on both). Usually stops when I lay back on my back or get up. Once I get up I’m not too bad. I’ve noticed these only when I wake up, they don’t occur when I’ve just laid down at bedtime. If I get up for a little while and then lay back down, the intensity of them seems less.
Have these now stopped for you Lee?
My Neuro thinks this is a sign of debris in the ear, which therefore be similar to BPPV.
Hi there. I had the same…everything spinning around when I lay down - only lasted 20-30 secs. This is BPPV. I had the Epley manoeuvre performed on me 7 months ago and have no problems at all since…not a single solitary spin !! So speak to your GP – he/she may be able to do it, if not ask for a referral. Alternatively, you can do some manoeuvres yourself that do the same sort of thing, But I wouldnt if I were you, without consulting an expert first. Mind you, anyone who actually knows what they are talking about in this field would be nice.
Thanks! Weirdly mine seem indefinite until I right myself. I’ll see if I can make them last 5 minutes lol. If it’s crystals or blockage I don’t get how the feeling could last indefinitely? Sometimes I’m very unsteady afterwards. But it must be something along these lines as it’s so clear cut and responds to actual position.
The lessening intensity after repeating def sounds life BPV or BPPV. Also has you got someone to look at your eyes when you spin - to see if you have rotary nystagmus ?
Mine have finally stopped after months of occurring each and every night. This would also occur if I was woken up in the middle of the night by my daughter. When I increased my Topamax dose from 100 to 150 they stopped. Now to find a way to get rid of the head pressure! My doctor said this was positional vertigo because it was so frequent.
I definitely am a MAV case as I get the classic migraines too. I am getting approved for Botox and will start that soon. My worst symptom now is the pain. Yuck!
That’s great news! I believe there is absolutely an underlying physical reason for these spells and BPPV should be self limiting over time, without treatment.
Changes in the sense organ over time may explain why our symptoms morph and eventually why many go into remission.
My theory is that for many MAV is a migraine response to underlying symptoms.
Makes total sense! Now I need to get my migraine to stop freaking out!!!
I’ve largely conquered the migraines with meds (and who knows maybe the underlying issue is improving) but I still get ‘brain shivers’ that make you feel like your forehead and parts of face are trembling which feel like the brain grumbling but these apparently don’t escalate to a migraine?- do you get those?
I don’t have that sensation but I have the very frequent head pressure that flares up to level 10 out of 10 migraine pain on occasion. For me this is all the same monster. It’s all on the right side of my head however. That’s what I can’t figure out. It’s almost like something happened to my right ear and now I can’t quite recover.
Hang in there. There is a lot of evidence from this site that things get better over the long term.
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Just wondering, are you sleeping on two pillows and are you off caffeine, MSG, etc? Even when I am on short courses of Nortriptyline I have to sleep on two pillows and avoid all caffeine and alcohol. (vertigotalesandtastes.blogspot.com)
Agree, two pillows to keep head up and try not to have caffeine or alcohol to improve sleep and avoid potential migraine trigger.
I sleep on one pillow but avoid all caffeine, alcohol, and msg as much as possible.