The Vestibular Migraine Community
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#1

Hello…A couple months ago I started having occasional episodes of off-balance and the need to grab onto something. Now, I am off balance every day, and feel like I’m going to pass out. Legs feel shaky and very fatigued, and heart feels like it’s pounding and get palms. Sometimes I get a pressure feeling on top of my head. While I never had headaches through life, when I hit menopause seven years ago got a constant migraine that lasted four years. Just got out of hospital cause this got so bad and no answers other than low blood pressure, which I’ve always had because I exercise regularly, orneuro doc said probably vertigo and just power thru it and you’ll be ok. Missing lots of work. Any advice would be really appreciated! Meds? Exercises? Is this vestibular migraine?


#2

Hi

Sorry that illness has had to bring you here but Welcome anyway.

Mvertigo.org is a support group. We are all vertigo sufferers not medics and therefore not able to give you a diagnosis. You will find infomation sheets on the Welcome section and other recommended reading to give you a better idea of what your condition may be. As you mention a possible link with menopause, I would just say to check out the ‘womens business’ section too. Personally I’m in the same category and with research it’s possible to see distinct patterns with VM developing linked to hormones. VM symptoms do tend to change with time, on here we say they ‘morph’. With the hormone linked type you can experience headaches which are later on replaced by dizziness. If you haven’t already had a diagnosis we usually suggest you see either a migraine specialist neurologist or a neuro-otologist. As you mention a neuro-oto in yr script would suggest if your lines of communication are still open, you ask his/her opinion. Bear in mind ‘vertigo’ is a symptom, not a diagnosis. It has to be caused by one condition or another although quite often despite research, the cause remains a mystery. Some GPs might be able to give you some clue as to whether you have VM ,MAV or BPPV or something else, like the low blood pressure, that’s causing it. Others know little or nothing about VM. In which case ask to be referred on. With VM you will soon find that it’s very much a case of being your own advocate both in reaching some general conclusion as to what you think you might be experiencing, seeking out an appropriate specialist and managing your treatment. There’s no definite test for VM. It’s a diagnosis of exclusion. It’s much a case of diagnosis by symptoms so it may prove useful for you to start a bit of a symptom diary. Good luck with your search. Will be watching this space to see how to get on. Once you’ve got a diagnosis, usually you start on diet or meds, then you’ll find lots of experience here to support you on your journey. Cheers


#3

I am already doing the elimination diet on my own, since I’ve had migraines in the past. Was in the hospital for three days last week and both the Cardio and Neuro docs had nothing to offer. When I asked the Neurologist about Vestibular Migraine, he rolled his eyes and said “if you go see an ENT they’ll tell you that’s what you have, but it’s not that”. I’ve already seen an ENT and they have tried the Ominiax machine (which does epley maneuver) twice, but no change. Initially the balance was really bad, now four weeks later, it’s a little better, but I have crushing headache and “shaky” lead-like feeling in my legs, and still getting heart palps. Can this all be a vestibular migraine…just looking for thoughts.


#4

Yeah, I had headache (I would describe it as head pressure though), shaky/lead feeling in my legs (restless legs at night sometimes too). I had lots of other symptoms including night sweats, racing heart (probably just anxiety) and photophobia. In fact, I didn’t even have dizziness until 2 months into my symptoms. So, whether I officially have a vestibular migraine or not is up for debate. But I have lots of head pressure and dizziness, and following traditional treatments for vestibular migraines are helping me recover. So, I just roll with it (-:

The diet is a good start, I had improvements with low tyramine. I’m also having good improvements with Verapamil and supplements (B2, magnesium, CoQ10). My advice is to go see another Neurologist. My first Neurologist was at a small clinic - he was an older gentleman and didn’t seem very interested in migraines. My current Neurologist is at a leading hospital in the area - he’s younger and seems quite interested in treating me for migraines. So, there are large differences in Neurologists out there, best to keep searching I think. Good luck.


#5

Thanks so much for your reply! What are “traditional” treatments for vestibular migraine?


#6

Strange one that on 2 counts IMHO. (1). I’d expect to have to see a neurologist, if not a neuro-otologist, to get MAV diagnosis. I lost count of ENTs who couldn’t find anything wrong with me despite my constant loss of balance and inability to stand. (2). Really great all these ‘experts’ who keep telling you what you haven’t got. Helpful that.

The Epley Manoeuvre is only any use at settling vertigo if it’s caused by BPPV.

Suggest you might try to find a neuro-otologist if nobody has already given you even a probable diagnosis. MAV is very individual, symptoms vary and change as time moves on. Try not to think of it as ‘just’ bad headaches even if that’s how it affected you previously. Some people - me for one - don’t get headaches at all. Migraine can involve far more than headaches. On here we aren’t medics so cannot diagnose. As MAV has no specific tests even the experts have to diagnose by symptoms having ruled other things out. Usually they carried out MRI to eliminate some movement disorders and other nasties before they hazard a guess anyway, The migraine diet may help. Keeping a diary may give you some clues as to what’s causing dizziness. Alot of vestibular problems do respond to migraine preventative drugs which your doctor may be prepared to supply but I’d try to get some firmer idea of what’s causing your problems first.


#7

Thanks for your reply. I was seeing an ENT and being treated for BPPV on the Omniax machine. Did that twice, but it didn’t help. I have another appt. scheduled and I know they treat vestibular migraines so we’ll see what he says. I’m in the process of looking for a neurologist or neuro-otologist, but need a referral from my PCP, who I am seeing later this week! Tough trying to keep a job with all this going on :frowning:


#8

Tough trying to keep a job with all this going on

Yes it really is, just keep going and eventually you’ll get it under control with the right treatment. Eventually I got pretty depressed after slogging it out for months, so be watchful for that. Might consider making some life changes too, at least it was helpful for me.

The traditional migraine treatments I was referring to were diet, blood pressure meds (propranolol or verapamil), and supplements magnesium/B2/CoQ10. There are also tricyclic antidepressants and anticonvulsants, both of which I haven’t tried (yet).


#9

Thank you! I’m doing the diet already, along with magnesium. Will research B2 and CoQ10. (I’m a Nutritionist by trade!) Unfortunately, I can’t do the blood pressure meds because my BP runs low anyway because I exercise regularly (although not lately!). Will talk to my doc about things when I see him.


#10

Yep, I thought the exact same about blood pressure meds because I run a lot and I’m skinny and my blood pressure is a bit lower than normal. But finally I just decided to try it anyways. I worked my way up from 20mg of Verapamil per day to 120mg over the course of 6 weeks and my blood pressure hasn’t dropped at all. And 120mg of Verapamil ER is working very nicely for me. I think adding a bit more salt in my diet may have helped keep my blood pressure from dropping too. Of course, depending on your diagnosis that may or may not be a good idea (e.g. meneires).


#11

I think you may well find betablockers won’t affect yr blood pressure. Mainly because the dose usually taken for migraine preventation is alot lower than that given to affect BP. Same generally applies to antidepressants and mood changes or rather lack of them. From personal exp I’ve found betablockers do lower your heart rate however. Ultimately what you are able to take depends on your medical professional’s decision as they are ultimately responsible for your well being. Well that’s the theory at least.

This is really interesting to hear. I’d love to hear your thoughts on the Migraine Diet. Not for my benefit. I’ve never done it. However I’m concerned about it being deficient long-term particularly for young mums. The onset of MAV after childbirth is relatively common hence my mentioning it. I understood the migraine diet was for elimination of triggers so assumed it was relatively short-term however have since read some people do stay on it indefinitely. It would awful to think it might be helping one condition but creating other problems for the future.


#12

I general I don’t like the effect of betablockers on exercise, feels like I’m unable to get my heart rate up and just feel weird. But… I do like them for anxiety, like when I need to do public speaking or something like that.

Also, I haven’t noticed a lower pulse on Verapamil. My resting pulse was already around 50 bpm though so I guess my body just doesn’t want it to go any lower (-: Interesting how everyone experiences different effects.


#13

Ah, guess the betablockers won then!

Not sure about Verapamil and heart rate but it’s a calcium channel blocker not a betablocker though must admit I’m not too sure how close they are. They are both designed to achieve the same result it seems used ‘on label’ as it were.