Vestibular Migraine / Migrainous Vertigo - what helped you?

I have started taking riboflavin, taurine and l-theanine in the morning, and 5htp and magnesium at night  - trying to find natural alternatives to the suggested meds' mechanisms of action.

I already eat a high protein diet and very little 'junk', no sugar or alcohol. I do drink lots of caffeine usually, so am cutting down - I can't imagine not having any! Have already cut out citrus fruit as I did start eating more around the time this all started, but could a couple of clementines a day really cause all this?! It's really puzzling. I have added in a ton of water as well.

I hope you feel better soon!

Hey, I never saw this reply. Sounds like you're getting there. I would definitely cut out the caffeine if you haven't done so. You have to ask yourself "is it worth a migraine"? Try eliiminating everything for a month and then slowly add say, the citrus or the caffeine back in to see if you get a headache. Then you will know for sure. Have you noticed a correlation with your menstrual cycle? If so you might want to try progesterone to even out the hormones. Have you had any MRIs to rule out anything more serious going on? I would do that as well. Ok, hang in there. This too shall pass

Blessings, Patricia

Do the pink lenses really help in florescent lighting? I need to get some! That's my worst trigger.

My Neurologist isn't interested in helping me, now that she has "diagnosed " me as having vestibular migraines. She is only willing to prescribe meds, which I have had no real luck with. As I said, the sumatriptan (Imatrex) sort of helps when I feel the fuzzybrain and I know I need to function at my best capacity, which is still not great. It's an improvement, but I don't want to be taking them everyday. They are not meant for that.

I feel I am no longer me. I feel overloaded whenever I do anything, including holding a conversation, reading, watching tv, driving, computer work....the list goes on.

Have you tried 5htp or l-theanine? I haven't yet, as I'm a bit scared of the long term effects.

Yes I have specially tinted lenses tinted with a colour called FL-41, which is supposed to help with fluros. I don't go anywhere without them in my bag now. I can actually go round the supermarket without having to sit down! Ask around at some opticians until you find one that does them. You can get them tinted to different degrees. Since I only use mine for brightly lit places I went for a 40% tint and they really do the job. You'll need to get an empty pair of frames which sit closely to your face (I just got a cheap pair from an outlet) so no light can get in through the sides or top.

Yes I've had no success with meds - I've tried about 6 now and can't tolerate any of them up to a therapeutic dose. They either make me sleepy or insanely depressed and I can't take beta blockers as I have low blood pressure already.

I've mainly found lifestyle changes have helped (FL41 glasses, screen tints, changing the bulbs in my house from energy-saving to daylight bulbs) but nothing has made me better.

I wouldnt be scared of trying 5htp or l-theanine: they are both much better than taking the antidepressants.I actually have both on my shelf but can't take them at the moment as I have to wait to see my neurologist again before coming off my latest meds. after all my med trials, I am kind of longing to try and help this more naturally, but a little bit of my brain says "What if that one worked?" as I do hear success stories about ppl with meds. But it doesn't seem to be happening with me. 

Mudskipper,

Did you get your migraines resolved? I had daily vestibular migraines for a couple if years, plus benign paroxysmal positional vertigo, extreme sensitivity to sound and perfume, anxiety and irritability (perhaps a natural result of fear of another migraine attack). My actual headache was always in the form of a tension in neck and shoulders. I also have a horrible time tolerating drugs but am now successfully on verapamil extended release (beta blockers didn't help at all). My migraines have gone from almost daily to 2-3 per month max, and the drug started helping within a week. My doctor said it is a very good drug for people with vertiginous migraine.

Hi Tori, Sadly no. I am still il after two years. I have ditched all the meds after trying one from every class suggested and not having success with any. I found the starter dose of Venlafaxine helped me with hand/eye co-ordination so I didn't spill things as often but that was all it did and higher doses made me feel too tired. So I took the lower dose for a while but had no further improvements. I also tried Topomax for several months because I'd heard it could work miracles in some people. Not me - I shrunk to a very unhealthy weight indeed, felt suicidal and lethargic. I ended up contracting severe pneumonia and had to be hospitalised, which I'm sure was due to my low weight and the Topomax which can be bad for immunity, And I'd already cut down to the lowest dose possible of that because of all the side effects. So I ditched everything a month or two ago. The only thing that has really helped me is avoiding my known triggers.I'm still not better but that helps me live as bearable a life as possible. I find that after 2 years, things are a little easier to manage and my brain has got used to certain things - like I am able to walk around my house easier. (I used to have trouble even walking down my own stairs) and do short, familiar walks. And now my body wants to sleep for longer - if I don't get enough sleep I feel pretty bad, so I let myself sleep if I need to. I'm reluctant to try any more drugs TBH - everything I have tried has done me much more harm than good. I guess I'll just keep going until my body and brain get used to things and can tolerate them more easily. I'm glad you found something that worked for you - I can't take Verapamil due to a pancreas problem. If I do get a headache, my rescue med is sumatriptan or migraleve - both work sometimes but not every time, but they don't help with dizziness. X

How many mg of verapamil do you take a day? I have been recently diagnosed with vestibular migraines after thinking for almost 50 years that i had Meniere's Disease...too long of a story to tell here. I have been having daily dizziness, wooziness, and head pressure and a sinus headache for about 3 months. It started getting somewhat better after vestibular therapy but it won't leave and I have some good days and some bad days. Weather changes really affect me badly. I was started on verapamil a few days ago and my doctor has me starting with 40 mg a day for the first week, increased to 40 mg twice a day for second week, and then in the third week going up to 40 mg three times a day.

Hey there, sorry I missed this message. I absolutely get what you're saying, but please don't give up if your migraines are frequent.  I have tried many, many meds for various ailments and  have been in the ER with drug allergies, gained 18 pounds on a med that was very hard to lose, and had crippling fatigue from several others.   I seem to get all the side effects, but still I am glad I kept trying because I have so much better quality of life now.  A neurologist once told me that any neuro/psych drug has the potential to prevent migraines, so she recommended going through and trying different types.

I'm nit sure it happened right away, but now when I get migraines they are more classic type without vertigo, balance stuff. My doctor said it's cbecause the verapamil helps with these issues. She also gave me naratriptan instead if omitted because she said it is known to help vestibular migraines more but now that I'm on verapamil, I think the imitrex works better for me. As far as when to know to take it, vertigo is not usually an early migraine sign fir me--I tend to get more neck and shoulder tightness as my classic warning sign --so I'm not sure what to tell you. I also have another condition called benign paroxysmal positional vertigo that is episodic, and interestingly have not any problems with it since going on verapamil

My doctor took me off the verapamil today because after taking 40 mg a day  for one week, I was having extreme fatigue, skipped heart beats ( 1 or 2 during a 60 second timing the 3 times I checked it), and increased acid reflux. I;m supposed to wait a week now and then he wil try me on another medication. I am disappointed. I could feel my head start to clear within about 40 minutes after I'd take the 40 mg, but the dizziness still came and went. Today, after my 40 mg dose this morning at 10am, it took about 6-7 hours before the dizziness started to lessen. For all I know that was probably the half life of the drug as it left my system. Have you ever heard of any other drugs that help with vestibular migraines?

Sooo sorry to hear about your side effects from verapamil.  How disappointing!  Did you by chance discuss the ER formulation with your doctor?  In theory it should help both to minimize side effects and increase efficacy by smoothing out peaks and valleys of the drug in your system.  The fatigue did wear off for me after 4-6 weeks.  But perhaps your side effects were just too dramatic to further pursue.

There is not a large amount of research on treatment and prophylaxis for vestibular migraine at this point. It looks as though there is some efficacy data from small studies on venlafaxine (Effexor) and propranolol (which my doctor recommends for classic migraines but not usually vestibular).  There is also a large ongoing study of metoprolol, so you may want to consider trying that med.  I don't believe results are out yet, but some funding agency obviously thought enough of it to pay for an expensive study. I also think topiramate (Topomax) has some good data in at least one small study, but really I think this is a very hard core drug and would try it as a last resort.  If you do try it, please make sure you see an ophthalmologist (not an optometrist) shortly after starting it to make sure it isn't causing a subtle problem with your eyes that can leave you blind.  There is a huge warning about this on the label for this drug, so really this is something to do whether the prescribing doctor recommends it or not (the drug label certainly does).  A pharmacist can give you more specifics.

 If your neurologist isn't able to suggest more meds for you, a good next step may be a university teaching hospital if you can get to one.  Given the large number of neuro/psych meds that could potentially help you, having a doctor who is up on the latest research about this condition and then going through potential meds starting first with those with the most benign side effect profile would be a reasonable plan. Good luck, and please keep us posted!

Actually, I was surprised when he told me to just stop taking the drug. I thought he would give me an option and let me know something about the possibility that side effects would lessen over time, but he didn't. So I don't know what to think. I might ask him about the extended release form and see what he says. Thank you for your help.