The Vestibular Migraine Community
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#1

Hi Guys…

I’ve just stumbled across this page and i feel like I’ve found a mirical with similar stories. I’m 23, and about 7 weeks ago I took a trip to Thorpe Park with some friends (reluctantly as I hate roller coasters). I went on a big ride and suffered awful dizziness after, could barely walk! I then thought it was a good idea to try again eye roll and went on the banana boat. I unfortunately had to stop the ride and was sick! (So embarrassing).

Anyways after this I went home and slept and felt completely fine until a week later. I went on a boat for a friends bday and felt very whoozy when I stepped on (extreme dizziness and nausea). Anyway I started to feel better the longer I was on and ended up being on the whole day. I came off and had a drink and about an hour later felt very light headed and ran to the toilet to be sick (it was a very hot day). Ever since this day I have not been right since.

I experience constant dizziness, instability, feel like I’m walking on a boat all the time! I’ve explained it that my eyes feel like I’m getting a migraine but a headache never comes. The doctors have been useless to be honest and have prescribed me Stemetil and said it’s to do with the crystals in my ears needing to align again … but it’s been 7 weeks! It makes me awfully upset I often break down to my boyfriend, he must be getting sick of me being no fun!!

Any help …?? Xxxx


#2

Hi, and Welcome

Sorry, we are not medics on here so cannot give you a diagnosis. If your doctors aren’t helping which it seems they aren’t (very common experience with these sorts of problems). Best bet would be to arrange to see a migraine specialist neurologist or a neuro-otologist (more specialist again but rarer and more difficult to find).

From your brief description it seems you have some sort of vestibular/balance problem may have been brought on by the roller coaster ride and other boat trips etc you’ve exp. recently. BPPV which is what your doctors are suggesting doesn’t last consistently for 7 weeks. Usually it’s positional, lasts a few minutes/seconds then stops. By my understanding of it it can recur often but isn’t continuous. If you have a history or family connection to migraine you may have migraine associated vertigo, affectionately referred to as MAV. A neurologist may be able to identify it for you. There is no definite test for it. It is a diagnosis of exclusion. As travel seems to be a main trigger you may also find it informative to check out Mal de Debarquement which has similar symptoms to MAV.

Meanwhile suggest you have a good look at this forum’s welcome post and user support section particularly maybe the keywebsites and on line resources section. Dr Hain (in USA) provides perhaps best info in the world on these sorts of conditions). From memory Vestibular.Org gives good descriptions of various vestibular disorders you might be experiencing. Have a good read before you make that medical appointment. Good luck with finding a solution.


#3

Vicki, TBH there’s not much you can actively do, you need to be very patient and see if it settles down - likelihood it will in the long term but inner ears are not fast at healing and they can create all kinds of odd symptoms (you wouldn’t believe!) in the meantime.

If it goes on for months rather than a few more weeks get to a neuro-otologist like Helen suggests to find some medication to help dampen the symptoms.

There’s a chance it might get a bit worse before it gets better, but it should ultimately get better.

The South of England has some good neuro-oto’s (I can recommend mine via PM). There’s also Dr. S in Tunbridge Wells who’s great apparently.

Let us know how you get on!


#4

it sounds just like MAV or Mal d’embarquement (literally getting off a boat sickness); the fact you feel like you are going to get a migraine would suggest MAV (Migraine Associated Vertigo). but i agree with the other posts - do get a diagnosis from a specialist.

I would suggest you get an NHS appt to see Dr Surenthiran at the Medway Maritime Hospital - your GP can refer you from anywhere in the uk. he is probably the leading Dr in the UK on these kind of conditions. you can also see him privately if you want to speed up the process. his private secretary’s number is on here: https://finder.bupa.co.uk/Consultant/view/25821/dr_shanmuga_surenthiran

his NHS webpage:
https://www.medway.nhs.uk/services/ear-nose-and-throat-ent/balance-centre.htm

if it is MAV, you will probably find the right med that helps you get better, but be warned, it can take months. i first got MAV about 14 months ago and although i am much, much better now, it has been a very long year…!

good luck and make sure you see Dr S or another neuro otologist who specialises in migraine.