Hi everyone,

Just received my dx of vestibular migraine. Does anyone else suffer from this? If so, what type of treatments have you tried? They are telling me it will be some form of medication. Is this something I will have to take everyday? Or just when I am feeling poorly? I don't get to see my neuro who will handle my meds until next week. I am just very curious.

Ronda

Hello,

Yes there are other sufferers on the board. If you put the word migraine in to the search engine it should bring up a load of posts. Generally they will put you on a preventative u take every day. They can be very effective.

Hope your consultation goes well,

best,

hi ronda,i too have been diagnosed with vestibular migraines.I also have some damage to my vestibular nerve in my left ear due to a series of viruses.As far as i know you usually are given medication to take daily.Depends on how frequent the attacks are and whether normal pain killers work.If you are seeing a neurologist then i take it pain killers dont work.Im currently taking verapermil.Have taken amytripiline in past too.(that one is a antidepressant and works by calming your nerves(i think).could you please tell me whether your dizziness is always there in some form i.e vertigo,floor moving sensation,or just plain out of it like your wearing someone elses glasses??,or do you have episodes of it????
take care
xbombshell31x

Xbombshell31x,

Although things have been much better lately, I was having dizziness, everyday almost all day, with bouts of severe vertigo. It was so bad at times I thought I was going to fall out of my chair. The dizziness I experience is very hard to describe. Things around me don't spin. The dizziness is is like a side to side movement. I don't feel like things are moving around me but inside of me, if that makes any sense. With the dizziness I also have tingling in my feet, it affects my vision, and fatigue.

I was told to read a book called Heal Your Headache. It is by a doctor at Johns Hopkins, Dr. David Buchholz. It is amazing. The first page into it I knew he would have some answers and he did. You should read it. I am hoping to handle the migraines without medication and I just might be able to with the help of this book.

How often do you get your migraines? Do you do anything else besides take the medication? Have you found out what your triggers are? Are you on a special diet?

Thanks for responding to my post.

Xbombshell31x,

Although things have been much better lately, I was having dizziness, everyday almost all day, with bouts of severe vertigo. It was so bad at times I thought I was going to fall out of my chair. The dizziness I experience is very hard to describe. Things around me don't spin. The dizziness is is like a side to side movement. I don't feel like things are moving around me but inside of me, if that makes any sense. With the dizziness I also have tingling in my feet, it affects my vision, and fatigue.

I was told to read a book called Heal Your Headache. It is by a doctor at Johns Hopkins, Dr. David Buchholz. It is amazing. The first page into it I knew he would have some answers and he did. You should read it. I am hoping to handle the migraines without medication and I just might be able to with the help of this book.


How often do you get your migraines? Do you do anything else besides take the medication? Have you found out what your triggers are? Are you on a special diet?

Thanks for responding to my post.

who did you see at johns hopkins?
the diet alone should be enough from what i was told.
do you get any popping or clicking in the ears?
thanks, lib

hi tooobuzi
Thanks for the tip on reading that book.I know exactly what you mean when you describe that kind of dizziness.I also too get tingling in my feet.Wasnt sure if it was related to my migraines.as for my migraines i have them nearly everyday.Not sure whether thats due to my sinusitus though????I dont really know what triggers them off.I have appt with a neurologist who specialises in headaches on wedneday to help try and keep them under control(current drugs are not working).if he suggests anything i,ll let you know.Just have to live with them at the moment.What kind of visual disturbance do you get???I constantly have little sparks of lights that wriggle around very quickly.Im used to them now.Do you also know why our feet tingle???havnt mentioned to docs but will on wedesday.glad to hear your not so bad at moment.
ps.not sure what part of the world you are from but do you know if i can buy that book in the UK.
take care

xbombshell31x

I am in the US. I do know that you can get it online at ***********. It is called 'Heal Your Headache" by David Buchholz, M.D.

I was amazed at some of the symptoms you can get from a migraine. I always thought a migraine was a pain in your head. This book tells you that it can affect your eyesight, your balance, it can cause tingling and burning in different parts of your body, etc. I had no idea. So yes, it could be causing the tingling in your feet.

I haven't even gotten very far into the book and just by paying attention to what I am eatting and my environment, my "attacks" are much fewer and far between. I still have a long way to go but at least now I feel like I have a tool to fight this with.

I also get the sparkles in my field of vision as well as blurred or foggy vision. Sometimes it seems like my eyes are shaking in my head, it sounds weird by really the only way I can describe it.

You mentioned your sinuses. I also thought that my daily headaches were from sinuses. This book tells you that migraine can cause the sinus problems!! I would have never guessed that. I guess it all has to do with the swelling of the blood vessels etc.

Also, one thing that I strongly recommend is telling your doctor everything you are experiencing. Sometimes my doctors looked at me as though I was crazy because I had so many symptoms, but in the end it helped to get me to a doctor that was able to give me a dx.

Good luck and I hope you find some relief soon!

hi tooobuzi
I saw neurologist,he wants to try me on some new medication but wont start me on it unless i see a psychiatrist as a side affect to the medication is that it can make you feel very low.He thinks im very depressed at the moment because of having to deal with these symptoms so long.He doesnt want to make me worse.So he will only prescribe me these drugs if i continually see a psychiatrist.Hope these drugs work.I forgot to mention to him about the feet as like you i have so many weird symptoms.I think they might think im crazy!!!Didnt know that migraines could cause sinusitus.It fits though because i started getting sinus problems about a month after this all started.I never had sinus problems before.I have had a diagnosis of MAV.Along with nerve damage to my ear.It took them a year to figure this out and many doctors thinking i was crazy i think.Im now at one of the best hospitals in london for this.So hopefully i will get sorted.will get that book thanks.take care

xbombshell31x :wave:

well... after 2 and a half years... ('yes'...I hate to say it,.. but it's true) -2 and a half years of dealing with this problem... it's finally pretty much been DXd as 'vestibular migraines' for me too. And so I relate so much to what you all are saying. My dizziness has never really been very vertigo-esq at all, but more of a drunken/swimming sensation in my head... like my equilibrium is WAY off...similar to how you feel when you get off a ride... or just like I said... very drunk, BUT..it affects my vision too, in the sense that sometimes it can look as if I, perhaps, have the wrong contact lens in one eye (though not THAT intense)...or like how things look/feel the first day you put on a new pair of prescription glasses. And sometimes I have a feeling of a very subtle aura (mostly in dimly-lit rooms).. but again...no way near as intense/specific as a regular migraine aura... it's always WAY more subtle. (Oh...and by the way...'yes'...I had MRIs, ENGS, eye exams, you name it).
Some days...it's more of the dizzy feeling in my head... some days it's more of the visual thing...and then on those real wham-bam crummy days... it's an intense combo of both aspects...to where it gets me incredibly fatigued.
They've had me on a migraine preventative (Topamax)...well...good thing about that is... I dont get -anymore- my classic, awful migraines... but I just don't know what it's really doing now in relation to my dizziness issue(s). I've had periods over the past 2 and a half years where the whole thing will greatly reprieve for a few months (the longest time being the first year this whole thing happened... it basically went away... and was gone for most of the year...I was so happy), but then in year #2.. after having a classic migraine (this was before I was on the Topamax).. it hit me with a vengeance... and since (over a year ago).. I only ever a get a few months reprieve... and then it flares up again. I've also been put on a special prescription vitamin complex called an LBC Complex (very high in Bs) which is supposedly supposed to strenghthen the balance/vestibular nerve. But -lately- I have to say I wonder if it's doing anything. One thing that's very consistent for me is... I tend to be a jaw clencher... and so now I CLEARLY notice that whenever I do it...it MARKEDLY makes the dizzy sensation worse. (I am going to look into getting a night guard to sleep in and have also...thanks to hbep's recommendation here :) ... just started taking magnesium.) I've been explained that the minute you clench your jaw, it puts pressure on your inner ear, and - thus- activates all the nerves there...especially then... that messed up vestibular nerve. Anyways... after having a good 2 months this year, it's been really bad lately (with no apparent reason for a flare-up this time around.... very puzzling!), and what I can never figure out with this DX of vestibular migraines is: if I'm experiencing dizziness/that weird visual stuff EVERYDAY to some degree... is it migraneous? or the messed up vestibular nerve? or both? And if it is so that it is migraneous... does that mean my brain is in some sort of migraneous activity EVERYDAY??...weird! (on that note... I don't have any of the classic migraine pain anymore... guess that's what's been good about the migraine preventative.) Oh... also to note... I am on an anti-depressant... a newer one...I don't think it's done anything -either way - for my dizziness symptoms ...except help to feel less bad about the whole thing(a TRUE blessing.) And... like I've stated in other posts... the only thing that has ever helped greatly with the dizziness symptoms when they get really bad is a low dose of Xanax... but even that works differently on different days... sometimes really working great... sometimes just making me a little drowsy... but it always mutes out the dizziness factor to some degree. Hopefully my sharing has shed a little light for some of you. Best, Matt :)

hi matt
i too have vestibular migraines.I,ve had them for over a year now with no let up.I dont get spells of dizziness,its a 24/7 thing.Since it all started the headaches have improved,not sure whether this is due to the fact that im not so worried about them having had MRI,s and CT scans.Did you have an ENG test in that rotary chair?If so what was the out come.My neuro-otologist said that my eye movements were suffient enough to identify first degree spontaneous nystagmus to the left in the absent of optic fixation.Have no idea what this means.She did say i have damage to the nerves in my left ear due to viruses in the past.I
Im currently not taking any meds at moment appart from anti depressants.My neuro wants to start me on new meds soon.Do you do VRT for your dizziness?
take care xxx
xbombshell31x

Matt,
You have just described me to a T. Only I had a few other symptoms like memmory problems etc. (You explained exactly how I have been feeling. I should copy it down so I can tell my doctors because I have never been able to put it into words that well.) I couldn't understand the tie between migraine and dizziness or vision problems. That is until I read this book that the doctor from Johns Hopkins told me about. It is making a HUGE difference!! There are two main things that you must do. You must get off of pain relievers that cause rebound headaches such as BC powder, or migraine meds with caffine in them. These make your headaches worse. (I know as I was living off of BC powder.) Then you must change your diet! Do you drink things with caffine in them? Of course I couldn't believe something so simple could help these awful things I was going through everyday but it did!!!! I had read that Banannas are really bad triggers for migraine. Yesterday I woke up feeling great, grabbed a granola bar on my way to work, after I was 3/4 of the way through it I could feel the tension creaping up and the dizziness. I checked the granola bar and it was a bananna nut bar!!! I stopped eating it right away, drank a bunch of water and the symptoms got better, not all the way but better.

You should really read the book. Medication alone is not going to help you. You have to figure out what is triggering your headaches. Besides that if you follow the book you may not actually need the medication.

Oh yeah, the other thing the books says is that people can have migraines for YEARS!!! I would have never guessed that that could happen, but I guess it is true as you and I are walking proof.

I have been noticably better for a few weeks. The two big changes that I have made are regular exercise (before I was too fatigued to do anything) and not drinking anything with caffine, including decafe coffees etc.

I am glad you got the dx. I know how frustrating it is to go to doctor after doctor and have them look at you like you are nuts or that you are making all this stuff up. This dx is actually a good thing because there are so many things you can do to get it under control.

Fingers crossed.
Ronda