The Vestibular Migraine Community
Please read our welcome post!

Medication Crapshoot?


Yes isn’t it odd? Bar a few obvious ‘events’ (eg around Lyme Disease) mvertigo seems to have been very civil. I guess the active moderation helps a little but since taking over I’ve only had to delete some brazen spam posts.

I often find FB acidic on the groups.


One of the things I noticed is that the people in this community seem smart. The writing is not only coherent, but often insightful and intelligent! Soooooo different than the garbage I used to read on pregnancy forums and Facebook…

Anyway, I have decided not to quite the forum despite the doc’s rec. FYI - this forum was included in the pamphlet they gave me!!! Such hypocrites really…!


:woman_student::man_student::man_student::man_student::woman_student::woman_student::woman_student: yep

hahaha :rofl:, awesome, thanks for the information and they are very welcome! :stuck_out_tongue_closed_eyes: :slight_smile:


They’re not really side effects are they? They’re effects. They’re also largely placebos. People thrash around wondering if this or that works and none of it does when is comes to medication. GPS dish it out because they’re big pharma shills and are loathed to say remove the stress in your life, change your diet, and your migraine will go.


I’m one for big claims but blimey that’s a huge one! Surely they are called ‘side’ effects because you experience stuff outside of diminishing the symptoms you are trying to treat.

I don’t agree they are placebo at all … I remember not being able to look at a computer screen without Amitriptyline but with it I could stare at a screen for hours. I could actually ‘feel’ the effect of the meds as they seemed to disconnect my inner ear from my eyes and made things much more comfortable. I immediately stopped getting migraines (which were occurring every 3 days at the time) and my visual vertigo ceased.

That’s very pessimistic and not my experience at all. And I doubt big pharma makes much on a packet of Amitriptyline or Propanolol, they aren’t very expensive these days having been invented in the 60s and become generic. I found Amitriptyline extremely helpful, but sure it’s no silver bullet and you have to deal with the residual stuff.


so did you change your diet and lifestyle and get better?


Of course. It’s the only thing that ever helps anyone. The 50% improvement you describe will have been the placebo effect and your belief in the white coat brigade. Same with cancer. Whilst it is now known that chemo has a success rate of 2 to 5% people swear by it because it ‘saved’ uncle Fred and they’ve baked a cake for it and run a marathon for it. Fred survived despite chemo ruining his immune system. When Sufferers of vestibular problems go to Western docs and hope for results… So they’re given triptans or tranquillisers… All addictive with terrible EFFECTS and withdrawal problems. I can just imagine a doc saying to you “diet and lifestyle changes won’t help you now… Your fucked”. It’s all a big scam lol.


Wow, someone more skeptical than me!

I’m not sure I’d go that far, but I believe the medications may be doing one or two things:

  • Making you feel better (but not necessarily resolving the problem). However this is working, it’s a good thing. My quality of life was definitely improved with Amitriptyline by a couple orders of magnitude. I could eliminate or increase the dizziness by increasing or backing off dosage and this was repeatable. It wasn’t placebo, no way … if I went too high with the meds dosage I would feel worse … not sure ‘placebo effect’ explains all that.
  • Helping your brain to adapt by reducing the frequency of or eliminating migraines. I strongly believe that MAV is about chronic mal-adpation … and migraines get in the way of this. Control the migraines and you help the brain adapt.
  • Effects we don’t know about … I wonder if the drugs that reduce blood pressure are reducing inner ear pressure …

For sure a lot of recovery is probably in large part about how the body re-regulates itself but I don’t think i’d use the word ‘scam’.

I believe doctors are genuinely trying to help but seem to be using clinical statistics to do this rather than science from reliable, known first principles. Whilst I believe the science is relatively underdeveloped and they have a long way to go to explain all the vestibular ailments, this is ok as they have real evidence of people’s symptoms improving and people getting their sanity and lives back.

But it’s surely not all good - I believe several of the ailments are related and different extents of a similar thing, but the doctors instead choose to classify them into buckets. When you present with things from two buckets they say something like “You are suffering from blah with a bit of blah” and offer absolutely no sensible explanation why!

A really bad example, of a brazen lack of using basic common sense to explain things is illustrated by BPPV and the Epley manoeuvre - now this is imho very dubious - they claim that by doing the Epley manoeuvre they re-position crystals back to where they should be. Absolutely ridiculous! For the crystals (otoliths) to send signals to the brain they would need to be attached to hairs and those hairs to tension-sensing neurons … if these crystals become loose and migrate into a canal they must have become detached, yet doctors claim by turning the head sharply without any instrumentation they can magically re-connect these tiny crystals to even tinier hairs! ARE YOU HAVING A LAUGH?! This kind of ridiculous explanation puts the whole discipline into disrepute and quite frankly they should be ashamed of telling us such nonsense. A far more likely explanation is that by increasing pressure in the inner ear by using both increased CSF pressure (they tilt you back) and centrifugal force (they twist your head) they cause an acute leak which reduces inner-ear pressure and this is what causes the relief! (but it’s risky because if you keep doing this you’d get Hydrops … oh and guess what? Hydrops is a known complication of BPPV treatment!! Badabing!). Of course there are other possible explanations - getting a clot of something or waste material in your motion sense area … repositioning that clot or garbage away from the senses may also help. But its surely nothing to do with ‘re-attachment’?! Can you imagine such a bull-in-the-china-shop action having such an incredibly precise effect?! Nope! It’s like hitting some balls of wool with a hammer and expecting this action to knit you a jumper!!!


Lol! My vestibular rehab yesterday included the Epley maneuver. I described pressure changes and fluid movement during the process but not much in the way of vertigo, that was all visual. She suggested I see a neurotologist and maybe get a CAT scan.

That would complete the set (GP, ENT, neurologists, endocrinologist, audiologist, optometrist, therapist). And complete my testing bingo card (bloodwork, MRI/MRA, optical exam, hearing exam, vestibular testing).

If Epley results in hydrops, I guess I’ll be reading all your back posts!


According to Hain. But it’s very rare apparently.


I’m not worried. I’ve had trauma to both ears, way worse than Epley could provide.


May I ask AutoBlackpool why you are visiting this site if you are so sorted and are able to control illness with diet and lifestyle changes?


I suppose it’d be the ultimate aim for everyone to be able to control it with diet and other choices. But we live in a pill for every occasion society. I’m sure that most medications don’t help one iota but many medics are clueless and need to do something in order to fulfil their remit as an expert. But I’m of the do what works persuasion, so if it’s a kook remedy or a big pharma ruse pill or even prayer… If you believe in it, go for it.