New Member - Medication and VRT questions

I am a new member. Unfortunately, I am not new to MAV. I became ill June 2007. Before that time, I was an active, 30-year old woman (I am now 32), and thought I had my life in front of me. I recently received my doctorate in psychology and was getting married. I have a history of headaches and migraine with aura, and then June 2007 I had severe disequilibrium (feeling like I was on a boat), felt exhausted, feverish (no actual fever), foggy, nauseous, and so unwell. I wasn’t diagnosed for awhile, and unfortunately after be diagnosed no treatment has helped. I recently found out that I did not give any med a good trial, until my current med Verapamil -I am on 480mg with no improvements. I have recently seen Dr. Buchholtz, author of Heal you Headache. I am feeling extremely hopeless. I feel like it might be an impossibility to find the correct drug. Next, I am going to go back on Nortriptyline which I tried in the past with terrible side effects. But, what is my choice. My first question is, I am so confused if VRT is helpful. Dr. Buchholtz as well as several other docs in NY and Boston said that VRT does not help MAV. However, there are articles stating that it can be helpful and others have tried it. I should mention that I am very strict with the migraine diet and try to exercise. I am basically very jaded and so very hopeless. I just want my old life back. I can live with most of the symptoms, except for the dizziness which is my worst symptom by far and most disabling. I am currently on disability from a job that I loved. I am glad to communicate with others afflicted with this awful illness. At least we are not alone. by the way, I would also love to have children; however, I cannot do so with meds and also worry that I will be unable to care for a baby (I can hardly care for myself). However, I have also learned that pregnancy can help a great deal w/ migraine. any thoughts on that?

Hi Lisa

Welcome to the board! I hope you find it useful. My story is quite similar to yours so I know what you’re going through. I was 28 when this started in Nov 07 and I am now 30. I am unable to work also and had to move back in with my parents. I also would dearly like children but worry about whether that will be possible now (also I don’t have a fella so that is another stumbling block to that as I think it would be quite hard to find one at the moment! :slight_smile: ) I have also struggled tolerating medications or finding one that works, I won’t even tell you how many! I must be one of the most med-sensitive people in the universe.

When I thought I had Labyrinthitis, I tried VRT for 12 weeks but it was of no use whatsoever. It just made me worse. I don’t know if this would be different if I was taking an effective medication at the same time but that’s the experience I had.

How exciting that you are being treated by David Bucholz! What is he like?

I know it is so hard to be positive about this situation, but we will get better one day, I know it. There are a number of people from this board who were previously very sick indeed who have got better and we will be the same, however long it takes.

Take care

Lisa,

My symptoms started 9 1/2 years ago, and back then very, very few docs had heard of MAV, now it is just a few. I went several years with an incorrect diagnoses of a desease that there is basically nothing to do, the docs tell you to just sit back and suffer and when it is bad enough, they will eventually go in and start cutting nerves. :cry: The ENT that I was seeing at the time decided that I was whining enough after 5 years that he was going to do surgery, and that is when I started looking for a second opinion. It took me almost two years, but I finally found a doctor that had not only heard of MAV, but she told me I was a text book case.

She also recommended VRT for me but I have never tried it. From everbody that I have talked to that has gone through VRT, if it did work, I would take a lot of time off because it will make the dizzies worse before they get better. If it didn’t work, then I would still have to take even more time off because not only would the dizzies get worse, but so would the migraines. I just don’t have the time in my life to be taking a month or two off, for something that may not work.

I always say this, “don’t get me wrong,” I have also talked to people that have had tremendous results with it. About the only group that I have talked to that has had a low success rate with VRT is the MAV people, but as I said, even some of those people (us) have had success with it. I’m not trying to talk you into or out of it, just trying to give you some info to help you decide.

Brian

Is your migraine active now, so to speak? From what I understand (from an ENG technician/balance center director), VRT won’t help until your condition is stable. (No guarantees it helps after, either, but it appears highly unlikely to work before.)
No more than two attacks, whatever they consist or (aura, headache, vertigo) a month or VRT is likely not useful. In fact, one time when I asked him directly*, he actually said that it’s usually needless torture, or something to that matter. The word torture was in there, in any case! Note though that the (needless) torture part applied to forcing yourself far beyond what feels OK before getting the migraine under control only, not after. (He’s pretty fond of VRT in general, as it apparently helps lots of patients a lot in his/their experience.)

[size=85]* … since my parents are convinced that “trying getting back to a life”, in other words forcing through all the motion sickness etc, will cure me…[/size]

Beech19-thanks for your kind words. I can completely relate to being med sensitive. I have tried many meds, too. THe verapamil has the least side effects for me, except for extreme constipation. However, it’s not working. Are you taking meds now? Dr. Buchholtz is extremely intelligent. However, there is a huge downside to seeing him. He does not prescribe meds. What he does is write a report that he wants you to share with you primary care physician, dictating what meds I should take. I do not like that approach at all.He also will not help at all with disability paperwork, etc. I am torn, as the prior doctors I have been haven’t had as much knowledge, and quickly took me off meds without giving them a good trial. I may go back to a doctor I saw last year in Boston. Thanks for your PM. How do we send those. If you ever want to email me direct, feel free (lrosen12@aol.com). It is nice to have support

Brian - thank you for that info. I am so sorry to hear how long you have suffered.

Tranquility - I have headaches about 2-3 times per week. I used to get migraine with aura which I do not get anymore. thanks so much for your reply

Hi Lisa
Welcome to the board.
Just wanted to answer your question about VRT.

As I understand it VRT will only be helpful if you also have vestibular damage. I may be wrong and if so please someone correct me, but if your symptoms are purely caused by migraine then getting the migraine under control is the key to feeling better. VRT will do nothing for you, and it will make you feel worse because the MAV will be triggered by the VRT and you’ll end up with a worsening of symptoms.

Vestibular damage can be caused by a virus - eg labyrinthis or vestibular neuronitis, I’m not sure what else it can be caused by. I had vestibular neuronitis, and the vestibular nerve that runs from my inner ear to my brain was damaged. The MAV kicked in as a result of me not recovering properly from that, I’m too dependent on my eyes for balance, and the VRT will help my brain to restore my inner ear as the dominant function of balance.

Hope that helps
Take care
Tess