Neurontin! That has not been suggested to me so far. I have tried Lamictal, topamax, verapamil, diamox, and prinivil. Tell me about Neurontin. What dose are you taking and what are the results so far?
I started at 100mg and worked my way up ā¦ I have been on it for about 3 months and am currently at 1500mg/day. This is a relatively high dose unfortunately - the problem is this drug loses effectiveness quite rapidly. A small increase once a week seems to have been what Iāve needed to keep it effective. It has had numerous positive effects being - greatly reduced levels of chronic dizziness, tinnitus and ear popping completely gone, photosensitivity gone, no headaches or pressure, improved mood and concentration. I have had no noticeable side effects despite my difficulties tolerating other drugs.
I hope you havenāt lost hope. How did you go on Diamox? I found that a very rough drug to tolerate although it worked well - it also has some very serious possible side effects that have always worried me (aplastic anemia, stevens-johnson syndrome). A family member dealt with SJS recently and it was terrible to watch.
I understand what youāre saying in regards to:
ā Begin quote from ____
I think the answer is: your guess is as good as mine and as good as that of many of my experienced medical colleagues.
ā End quote
But there is some very promising research occuring in this area. Have a search for Baloh (RW) on medline - he is a leading expert in this area. He believes migrainous vertigo may be a channelopathy - all patients Iāve suggested go and see him, who have, have been diagnosed with this condition and have gotten either a little or a lot better. He is also a geneticist and does a lot of genetic studies on people with this condition. There are some striking analogues of MVā¦ episodic ataxia is worth reading aboutā¦ replace ataxia with vertigo and you have MV. They have shown this to be a calcium channelopathy. It also responds to many of the same treatments as migraine, and almost all patients with it have migraine headaches.
I found diamox terrible. I felt drowsy and unable to work. Thats scary about the neurontin. So you have had to increase it weekly to maintain the improvement? I did email Roberto Baloh and he suggested Diamox. I have lost hope a little, I have to say. I am currently trying cinnarizine (Stugeron) which you canāt get in Australia. There is a pharmacy in Sydney which imports it especially however. Again, its a balance between the side effects (drowsiness, increased ear pressure and tinnitus) and any possible improvements (which are hard to evaluate as i seem ok one day, bad the next few days). Anyway, I will put Neurontin next on my list. Its encouraging to hear that improvement is possible, even after so many drug treatments for you. Did you go to see Roberto Baloh yourself?
I am pretty keen to see Baloh, as perhaps he has treatments that I have not tried. I have tried Cinnarizine alsoā¦ which made me feel very sick, all the time.
The thing is, Cinnarizine is sold over the counter in Europe as a sea-sickness preventive. It is widely tolerated. Some of the experts also mention that they believe heightened sensitivity to medication is also common in MV.
I did email him at one stage but had no reply - perhaps the email was a little too long 
I may try again. Diamox (acetazolamide) is generally the medication prescribed for channelopathies - he has reported some success with this in MV. It works for me but is very difficult to tolerate. Regarding the scary side effects - that was Diamox i was referring to!
I may even see if I can tee up a (paid) phone hookup with Baloh as a form of appointmentā¦ discuss my issues and see if he has any advice. Hopefully heād be open to that. You donāt happen to know the contact details for his reception do you? Hopefully I can find them by digging around in Google.
I definitely feel a LOT better with Neurontin. I did fight through some initial worsening of symptoms over the first week but it got better and better from then on. It really is true that you have to put up with it before it starts to work.
What I am hoping is that when I reach a very high dose (eg. 3600mg) I can taper off it and go back on it after a short period and hopefully it will have regained effectiveness. There is also a derivative called Lyrica (pregabalin) which I may be able to switch to - it apparently has some benefits.
Never give up mate. The search for answers is hard. The problem I see is that if you accept that its a peripheral lesion despite unexplained symptoms, you have very little you can do to treat it besides VRT. If it doesnāt work youāre stuck - and if you have MV it almost certainly wonāt work. At least if it is MV, you can feel as though there may always be a drug treatment around the corner that will either help enough, or get rid of the symptoms altogether.
Adam
Hi Adam,
What kinds of side effects did you get with Neurontin?
Apart from Halmagyi et al in Sydney, have you heard of any other neurologists in Sydney who have an interest in this area?
Hi, Linda your case does sound complex, especially with 25 years of migraine (do you mean MAV, or classical migraine?) and bi-lateral loss of vestibular function. It sounds like all you can really do is try the MAV meds and give the VRT a goā¦I donāt know if this is the same in your case but people Iāve spoken to who use VRT and then decompensate find that using VRT again hastens recoveryā¦and as they go on they get better at it and find out which exercises they need most etcā¦integrating them with doing things that visually challenge them.
Rob, I would be interested to read those papers. Just to let you know that I have pursued a varied programme of VRT (5 months nowā¦iām told it can carry on improving for up to a year) and it has been really successful in recovering most of the vestibular function. Having said that it is not right, and still has a big effect on my life. I have worked hard on VOR, Ocular-Motor and gaze stability exercises. I was only the second eye-dominated balance patient that the physio had ever had, and the other one she had also had vestibular neuritis in late teensā¦presumably because our balance systems eyes/muscles etc were strong enough to carry on functioning abnormally with a loss of vestibular function i.e sheltering the problem which is the worst thing to do. I imagine much of the decompensation problem is due to this eye domination aspect- Iām not sure if itās fully reversible even with VRT.
Hi Boris I am going to say MAV to your question. Athough I have classic migraines too if that means the kind with aura. And your right trying meds and Vrt are really all I can do to see if I improve.
I assume you have vestibular function and that your eyes took over instead of your vestibular system getting better. I have just my eyes and muscles for balance. I guess in that situation a person would have to be eye dominant.
Linda
Hi Boris,
I will dig those papers out for you. Can you tell me what kinds of exercises you did for VOR/gaze stability etc? I have to say, I tried some basic ones but didnāt stick at it for 5 months. I got disheartened very quickly. Are there any resources on the net that you have found for these kinds of exercises?
I have just been started on flunarizine and day 1, I feel disappointed already. Tinnitus worse, dizziness worse. Iāll try and stick it out for as long as possible.
Hi Rob
First few days of neurontin were pretty rough for me and gradually got better. See how things go with Flunarizine - it has a very long half life (an almost ludicrous 19 days) so you shouldnāt have the troughs and peaks of short half life meds.
I am still going well with neurontin and have just started to switch to pregabalin (Lyrica) which is a very similar med but supposedly has less of a problem with tolerance. It is going well so far.
Adam
Adam, Iāve been on the Amitriptylin for 21 days now. Iāve seen some improvement with my mental clarity and the ability to concentrate during stressful times, but Iām not seeing a big change in the dizziness/imbalance feeling. Currently Iām taking 25 mg a night. Does this drug take time to work? Should I explore other meds? Itās tough right now because I feel like Iām on my own experimenting without a specialist montioring my progess, just a primary care thatās willing to try. Any thoughts would be greatly appreciated.
Rob, there are some good exercises on labyrinthitissupport.org which I now believe has changed its name to dizzytimesā¦The exercises I did and still do in a minor capacity are standard ones offered by vestibular physio departments. If you send me your email address I can attach the internet ones and the patterns I use to assist me. Iāve found them very useful. I just wish I could get rid of the residual anxiety, since Iāve been looking for work and getting interviews it has got steadily worse and seems to be affecting my body and balance in a different wayā¦Iām irritable, my neck is stiffening, Iām finding it hard to switch off, Iām tired and the nystagmus is very noticeable. I feel similar to when I decompensated last August. Anyone got any Meds suggestions? Iām taking some herbal tablets which are helping a little but nothing else.
Thanks Boris. The meds that are mostly used for anxiety are the SSRI antidepressants and other antidepressants as well. The benzos like ativan and valium are great but too addictive. You can also have cognitive-behavioural therapy from a psychologist - a short term treatment which will give you strategies to manage the anxiety.
Adam, Prof Halmagyi has put me on flunarizine. I think you said you tried it. What was it like for you? So far, its like verapamil for me - tinnitus worse, full feeling in the ear, dry mouth, plus drowsiness. How long did it take to work, if at all?
And does anyone know of a neurologist in Sydney interested in these kinds of problems who is accessible, ie you can get an appointment sooner than three months away?
Hi Rob
Flunarizine actually made me very ill. I was off work for 5 weeks, vomiting every few hours and with severe abdominal pain and diarrhea. I was also unable to sleep much of the time. These probably would have been mild side effects for a day or two had Flunarizine been any other drug, but because of its half life it dragged out for those 5 weeks. I lost 13kg over those 5 weeks as I was unable to eat from the worst nausea I have ever experienced and had to go to the ER every few days for IV fluids.
Prof Halmagyi didnāt really seem to believe that Flunarizine made me this ill and the only advice he had for me was to keep taking it!
All that after 3 doses - unbelievable. I no longer take any meds with that long a half life.
Still getting good results from neurontin/pregabalin.
Adam
Hi Adam,
That sounds horrendous. I am not that bad. Are taking a combination fo the two? And what doses? Are you still having to progressively increase dose to maintain the effect?
Hi Adam,
I had to stop the flunarizine. I couldnāt stand it any more. Tinnitus, dry mouth, drowsiness. Maybe I will try Neurontin next. Do you find it makes you drowsy?
Iām back at work now- started on citalopram for the anxiety but it made it far worse- Iām now on diazepam as and when the anxiety gets very badā¦it is useful in in the tiny dosage (2mg) iāve been diagnosed. I only tend to take it when the anxiety induces the rocking or swaying sensation in my head (as lowering the anxiety is aiding the balance), or the nerves in my body are so bad I canāt sit or keep still. Is there a non-addictive alternative to diazepam that I could safely take daily or in higher dosage to gain this calming sensation to a greater effect?
Rob: I find the oppositeā¦ I am much more alert (especially when waking up in the morning!) on neurontin.
boris: incidentally, if a calming sensation is what youāre after, some people find neurontin calming - has been approved for generalized anxiety disorder in some countries.
Hi Adam,
can you tell me what dose regime you used with gabapentin. And are you still on it?
I recently saw an ENT who thought I might have a meniereās-like syndrome. I donāt think I have menieres because I donāt get spinning vertigo or fullness. Anyway, I agreed to let him put a grommet in my ear so I could use the meniett device. It made my symptoms dramatically worse. He doesnāt think that is possible. So Iām trying to get the damn thing taken out of my ear now and I think my next thinng will be neurontin.
Rob
Hi Rob
I started on 100mg a day then every 2-3 days I bumped it up by 100mg or when symptoms started going backwards.
I reached 2400mg a day at one stage (it took about 4 months to get there - keeping symptoms minimal the whole time) but it started to be very difficult to keep it effective without going up in very large dose increments. So I tapered back down to 0 and started again - but it hasnt been as effective this time.
Apparently pregabalin (Lyrica) maintains effectiveness longer, at lower doses (recommended max is 300mg i think). It is supposedly an improved version of neurontin with the same modes of action.
Adam
ā Begin quote from ārobsydneyā
Hi Adam,
can you tell me what dose regime you used with gabapentin. And are you still on it?
I recently saw an ENT who thought I might have a meniereās-like syndrome. I donāt think I have menieres because I donāt get spinning vertigo or fullness. Anyway, I agreed to let him put a grommet in my ear so I could use the meniett device. It made my symptoms dramatically worse. He doesnāt think that is possible. So Iām trying to get the damn thing taken out of my ear now and I think my next thinng will be neurontin.
Rob
ā End quote
Hi Adam,
Thanks for that. That is really disapponting. What are you taking at the moment?