Helloā¦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 Iām going to pass out. Legs feel shaky and very fatigued, and heart feels like itās 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 Iāve always had because I exercise regularly, orneuro doc said probably vertigo and just power thru it and youāll be ok. Missing lots of work. Any advice would be really appreciated! Meds? Exercises? Is this vestibular migraine?
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 āwomens businessā section too. Personally Iām in the same category and with research itās possible to see distinct patterns with VM developing linked to hormones. VM symptoms do tend to change with time, on here we say they āmorphā. With the hormone linked type you can experience headaches which are later on replaced by dizziness. If you havenāt 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 āvertigoā 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, thatās causing it. Others know little or nothing about VM. In which case ask to be referred on. With VM you will soon find that itās 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. Thereās no definite test for VM. Itās a diagnosis of exclusion. Itās 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 youāve got a diagnosis, usually you start on diet or meds, then youāll find lots of experience here to support you on your journey. Cheers
I am already doing the elimination diet on my own, since Iāve 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 āif you go see an ENT theyāll tell you thatās what you have, but itās not thatā. Iāve 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, itās a little better, but I have crushing headache and āshakyā lead-like feeling in my legs, and still getting heart palps. Can this all be a vestibular migraineā¦just looking for thoughts.
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 didnāt 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. Iām 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 didnāt seem very interested in migraines. My current Neurologist is at a leading hospital in the area - heās 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.
Thanks so much for your reply! What are ātraditionalā treatments for vestibular migraine?
Strange one that on 2 counts IMHO. (1). Iād expect to have to see a neurologist, if not a neuro-otologist, to get MAV diagnosis. I lost count of ENTs who couldnāt find anything wrong with me despite my constant loss of balance and inability to stand. (2). Really great all these āexpertsā who keep telling you what you havenāt got. Helpful that.
The Epley Manoeuvre is only any use at settling vertigo if itās 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 ājustā bad headaches even if thatās how it affected you previously. Some people - me for one - donāt get headaches at all. Migraine can involve far more than headaches. On here we arenāt 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 whatās causing dizziness. Alot of vestibular problems do respond to migraine preventative drugs which your doctor may be prepared to supply but Iād try to get some firmer idea of whatās causing your problems first.
Thanks for your reply. I was seeing an ENT and being treated for BPPV on the Omniax machine. Did that twice, but it didnāt help. I have another appt. scheduled and I know they treat vestibular migraines so weāll see what he says. Iām 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 
Tough trying to keep a job with all this going on
Yes it really is, just keep going and eventually youāll 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 havenāt tried (yet).
Thank you! Iām doing the diet already, along with magnesium. Will research B2 and CoQ10. (Iām a Nutritionist by trade!) Unfortunately, I canāt 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.
Yep, I thought the exact same about blood pressure meds because I run a lot and Iām 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 hasnāt 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).
I think you may well find betablockers wonāt 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 Iāve found betablockers do lower your heart rate however. Ultimately what you are able to take depends on your medical professionalās decision as they are ultimately responsible for your well being. Well thatās the theory at least.
This is really interesting to hear. Iād love to hear your thoughts on the Migraine Diet. Not for my benefit. Iāve never done it. However Iām 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.
I general I donāt like the effect of betablockers on exercise, feels like Iām unable to get my heart rate up and just feel weird. Butā¦ I do like them for anxiety, like when I need to do public speaking or something like that.
Also, I havenāt noticed a lower pulse on Verapamil. My resting pulse was already around 50 bpm though so I guess my body just doesnāt want it to go any lower (-: Interesting how everyone experiences different effects.
Ah, guess the betablockers won then!
Not sure about Verapamil and heart rate but itās a calcium channel blocker not a betablocker though must admit Iām not too sure how close they are. They are both designed to achieve the same result it seems used āon labelā as it were.