MED Poll

After getting crushed by MAV about 5 years ago, I EVENTUALLY found the neurologist who saved my life. So here’s my cocktail - I know: it’d knock a horse out.

Amitriptyline 75 mg daily
Librium (chlordiazepoxide) 10 mg (yes, 10 mg) daily
Effexor 75 mg daily
Buproprion 10 mg (I think?) daily - I tend to ignore this one because I’m not sure it added anything but isn’t bothering me either.

also oral contraceptive continuously for migraine prevention
Zofran (for nausea) as needed if have out-of-the-blue vertigo - usually rare but few episodes around Christmas because I ate EVERYTHING we’re not supposed to eat in mass quantities. Lesson learned. Also take before flying just in case.
Ambien as needed. Mostly for when I have a pretty bad headache at bedtime or wake in the middle of the night with a bad headache.

Drugs and doses haven’t changed in a couple of years. I see my neurologist about once a year now to get refills and talk shop since I’m a physician. I don’t have bad side effects thankfully. I blame the Amitrip for wanting to eat all the time, so I have to have self control. Too bad about Christmas…

I’m at about 90-95%ish. It’s funny trying to give a percent. If the weather is calm, I feel mostly normal except for my permanent bilateral vestibular loss which manifests as bad balance. The lack of balance is not a big issue. I lift weights and try to stay very active to keep my bones strong. I don’t want to break a hip when I fall when I’m much older. My husband is a unicyclist actually :slight_smile:

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dizzymingo how do u know your bad balance is from the hypofunction- couldnt this be from mav? could another med help? are u able to walk unassisted?

Lamictal
100 mg twice a day for past 10 months
slow improvements over 4-6 months as titrated up to therapeutic dose
75-85% depending on hormones/specific triggers

This gives me some hope–reading all the percentages of progress.

Update: what has helped me:

Nortriptyline, 50 mg.

Took maybe 4-6 weeks before I started really noticing an improvement.

I would say maybe 60-75 percent better. But that’s a lot. My symptoms were never disabling and bad like most of the people here. So I am in really good shape! Feeling very lucky and pleased.

The vestibular hypofunction, MAV, it’s a confusing picture. My theory is that I had such a bad attack of MAV (postpartum) that it permanently damaged my vestibular system. I know it sounds a little crazy, but I don’t know what else is more likely. The ENT says that about 50% of bilateral vestibular loss is “idiopathic” - meaning they don’t know the exact cause. I think if migraine were easier to study, they’d be able to fill in some of that percentage.

I had all the tests done at the ENT when I showed up in a miserable state. The tests showed the bilateral vestibular loss. I met with the vestibular PT once I was doing MUCH better, and we talked about repeated the tests mostly out of curiosity. But then she had me try some simple balance moves, and I failed miserably even though my migraine symptoms were pretty much gone that day. The simple answer, I guess, is that I can just feel that my balance sucks even though my MAV is almost always well controlled. I am able to walk unassisted, but I worry how old I’ll be (or young) when I would need a walker. I had to donate my high heels of course. Sometimes I wear wedges as sort of a balance exercise, but that can look kind of sad. I can’t walk in dark places and take the stairs very slowly, gripping the rail. I tell people I have the balance of an 80 year old woman - maybe the quickest way to describe it?
Anyway, compared to those awful months when I didn’t know how to fix myself, I’m doing awesome and am very, very, exceedingly grateful.

I take nortriptyline which works really well on some of my dizziness but does nothing for my balance. Just curious if another med could help that symptom?

40mg Celexa daily
0.25 Clonazepam before bed
90-95% but still cannot do certain things (basketball, plus dizziness at bedtime/sleep).

  1. Which med helped you? Or not. Propranolol.
  2. At what dose? 80mg
  3. What % improvement did you see? At times I say none, but overall i would say 30%.
  4. How long were you taking the med before it improved your symptoms? About several months.

1,2. Fluoxetine 20 mg, clonazepam 0.5 twice a day, verapamil 80 mg twice daily. Zofran and Imitrex as needed for migraine breakthrough and nausea.

  1. 80%. Still get migraines every couple of weeks, worse with weather, certain foods, stress etc. Omitted usually aborts migraine or reduces duration from 3 days to 1. Vertigo much better but does flare up with migraines and my balance is never great. Still motion sensitive. But I was bedridden for 3 months with continuous dizziness, migraine and nausea. I lost 40 lbs and struggled to take a shower let alone do anything else. So I am so glad to be where I am at. I am able to work 3 days a week and am able to enjoy my family despite some limitations.

  2. Fluoxetine and clonazepam about 20% improvement after 1 month. Started to improve within a week of starting verapamil but took about 1-2 months to get where I am now. Have been on meds for just over a year.

B2, Magnesium, Ibuprofen up to this point. I have a high sensitivity to drugs, so I am very careful about what I take.

Hi,
Nadolol 10 mg am & pm got me back to work and 90 to 95% most of the time unless I had something big happen like illness, new glasses or getting root canal and dental implant. This worked really well for me for 2 1/2 years until recently. My naturally low blood pressure seems to b going too low on this medicine now suddenly.

When I first started taking nadolol, I took only 10 mg in am and 400 mg magnesium glycinate in pm. This took about a couple of weeks to really kick in. It also took about a week for the side effects from the nadolol to subside. I had to increase dosage because of chronic allergies that were triggering mav.

I wish I could still take this bc there were very few side effects.

Jeanette

So people that posted on here a few months ago or even less with positive results - how are things holding up? I’m very curious to see if all these high percentages are long-lasting!

  1. nortriptyline
  2. 30 mg
    3 95%
  3. Felt relief immediately the next day… but then up and down for about 8 weeks before leveling out.

Nortriptyline 75mg
Verapamil 480mg SR
Effexor 75mg SR

Went from bedridden to about 95% everyday!
Been on all three for the last 7 years

Hello all,

I am interested in knowing whether as an adjunct to pharmacological management to your VM, if you were encouraged to undertake specific vestibular rehabilitation exercises or even have psychology input by your neurologist/ specialist? I am happy to declare my interest as a neurological physiotherapist who regularly sees patients with vestibular dysfunction. I have just come across your forum and there seems to be very little discussion regarding the role of vestibular rehabilitation exercises despite clinical research evidence to suggest that it can assist with recovery of VM, which is surprising to me. Thanks, Eyal

Useful thread, bumping:

  1. Amitriptyline
  2. 20mg
  3. 80% of my normal feeling on average (some days I drop to 60%, some days I’m 95%)
  4. 4 days! (yup, that effective! But upped to 20mg a month later, which reduced dizziness further, 30mg doesn’t improve things)

BUT still feel the underlying issue is not addressed, some minor migraines still creep in occasionally, but the main attacks are under control. I still believe that I have an underlying hydrops condition (not diagnosed, but you kind of just ‘know’) which ebbs and flows and that has a big influence on how I feel - some days lightheaded, some days more dizzy than others - and occasionally (maybe once a month) gives me a minor dizziness attack which can include a nasty ramp of tinnitus which takes a day or two to die down properly. It doesn’t feel like a full blown menieres condition and I have no low frequency loss. Main trigger is stress, but also suspect very salty food can do it, but not confirmed.

Dizzymingo, just a theory (if you still read these boards) but Amitriptyline is, in part, a vestibular suppressant, so on that significant dose your brain will lose benefit of some sensory feedback. I guess the only way to fully compensate for loss is cut back on the drug and expose the brain to all the sensory information … however, you’d have to come up with some other plan to control the migraines, as I’m sure in my case its the sensory mess that is triggering the migraines.

Just a thought, but if you do balance tests while on a medium/high dose of Amitriptyline the results are going to be seriously affected by the drug which will probably impair your senses. So don’t get too disheartened by the results until you discuss that possibility with your neuro.

The balance loss if the least of my problems. I have a desk job, and I exercise regularly to stay strong and healthy. I wish I could run on the treadmill though. Ice skating would be fun :slight_smile:
My vestibular testing was performed before I was taking any drugs. My loss of balance/orientation feels pretty much the same but with the help of drugs (amitrip and others) my head can deal with it without making me totally disabled. I would never stop the amitriptyline or any other drug to try to improve my balance - SO not worth it. I couldn’t even try balance exercises the vestibular PT taught me until I had the migraine under control. Now I try to work them in - standing on one foot, etc.
Anyway, I’m still doing great keeping up with a very demanding job, husband, kids, dogs…Life is great. I still have bad days for sure, but I’m mostly very grateful for getting my life back.

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Ah thanks for checking back in. Great to hear you are still doing well! I hear you with regards to stopping the meds and feeling like I used to. No sir! But perhaps there is a way to do it slowly and compensate? Something for the Neuro …