I thought the response from Dr Rauch was really brilliant! I think it filled in lots of grey areas we might have had. I particularly really like his anaolgy with the pool and keeping the water level below our heads and preferably at about waist level. That could easily become a new way of measuring how people are feeling on the symptom front! He also made it very clear to me that regardless of treatment we must always be mindful of diet and lifestyle and that meds are not a substitute for this. I think I was under the impression that if I could just find the right med(s) for this, I’d go back to my days of being able to drink beer all night and top it off with a massive plate of deli food all on 3 hours of sleep. Not so for the vast majority although I do know of one person who was able to go back to partying etc after a two-year pizotifen treatment. Rare I imagine. For most of us we will likely occasionally experience the “fat kid jumping into the pool” from time to time.
Anyway, I look forward to your thoughts and what things stand out for you all.
We can all be very grateful that such a well-known and respected doctor as Rauch was willing to discuss this with us, especially in as much detail as he did.
Here’s a question: What if you’ve got an MAV patient who ALREADY has a diet/lifestyle that is appropriate (in accord with MAV-treatment “guidelines”)?
Edit: Well, I guess that’s a dopey question, actually … I suppose you just make sure you maintain it (and re-evaluate it to make sure you’re not overlooking something).
I should think there are some cases where lifestyle habits/choices aren’t responsible for precipitating the problem. But, it sounds like Rauch was speaking of these measures more as preventative ones (minimize chances of future trouble / lessen current trouble) … but to NOT following them, it seems, is certainly flirting with danger.
(To plagiarize myself: It’s a bit like giving someone a gun and not telling them what will happen if you pull the trigger…!)
I found Dr Rauch’s information really useful, it’s informative, comprehensive and nicely explained in lay terms. It is also very generous of him to give his time in this way. A big thank you to him and to Scott for preparing and asking the questions.
From my appointment with Dr Halmagyi this week I can confirm that he and Dr Rauch appear in agreement over a lot of issues - from the questions I asked Dr Halmagyi this includes the advice that migraines do change over your lifetime. I had been really struggling with this as my migraines had always run like clockwork and my MAV symptoms were/are totally different. That probably explains why it took several years and episodes to get a correct diagnosis.
Dr Halmagyi and Dr Rauch also promote lifestyle factors such as exercise, and both use tri-cyclics. Dr Halmagyi also advised me that Topamax has side effects, which doesn’t seem to occur as much with the tri-cyclics.
Depressing news on the diet front but it is extremely healthy - with or without MAV and worth a try. Must try harder, must try harder…
Thanks Scott!
Wow! What great information. I really respect Dr. Rauch for taking the time to go over these questions. His answers will help countless people who are trying to figure out “what’s wrong with them.”
I found it very interesting at how MAV used to be called “floating women syndrome”…funny, but that’s exactly how I felt when I was in the throws of this craziness.
I also found his answer to question #2 interesting. He basically described what my neuro-oto told me, which was he believed a virus (labrynthitis, VN) stirred up issues in my neck, which started pain issues, which triggered the migraines/MAV, and got the whole thing going. It was interesting how he pointed out that pain is a big migraine trigger. My neuro told me the Cymbalta I’m taking is supposed to calm everything down and get the pain under control so the MAV is under control as well. After 4 weeks on it, I can honestly say I’m feeling great :D, better than I have in a year! I hope it continues.
Thanks again Scott for putting this together. This information will help so many of us!!
Scott- thank you again. I thoroughly enjoyed reading through his answers. Very informative.
I am still so perplexed about what drug to try next. His usage of Nortripytline greatly goes along with Dr. Buchholtz (who I have seen) as well as Dr. Priesol. I saw Dr. Priesol who is also at MAss eye and ear last year. His first choice was nortriptyline. After getting up to 20mg (which wasn’t easy) I ended up finding a doctor closer to home (newman) who immediately took me off that drug and put me on Verapamil. I sure wish I stayed on Nort. and got it to a therapeutic dose. I actually have another appt with Dr. Priesol in 2 weeks, who I know is going to want me to try Nort again. Is Nort a better drug for us than Effexor, or are the doctors prescribing Effexor and SSRIs just ahead in the research. Maybe Dr. Rauch finds that Nort works, so why ruin a good thing. Just so confusing that one doctor might prescribe SSRIs (like Dr. Newman in NY) and another doctor (Rauch, Buchholtz) actually say that it could cause increased migraines. Such contradictory info. Who do we believe? I know there is no answer to this. just frustrating by this whole medication enigma. Don’t mean to post pessimistic comments after such a wonderful response from Dr. Rauch. I am so grateful that he did that.
Thank you for the research. I found this very useful. He is was very nice, respectful, and polite as well as informative. One thing I can say is Dr Newman after being stable for over 6 months (1 year), left it up to me and I chose to come off the medication. I relapsed and then he immediatly put me back on the medication.
Lisa:
I think if you went to 5 different experts they would choose the medication they have found success with and what worked for them. Like we all know trial and error.
I know Newman’s first medication is always Verapamil 100%. He uses SSRIs for patients like me in combination with Verapamil. I asked him why and the reason he gave was I came in and stated I was highly anxious. As Dr Rauch stated stress is a big trigger. If we are in a constant worry cycle we will constantly trigger the MAV. By using SSRIs such as Zoloft, Effexor (choice of doctor) you are controlling a major trigger in anxiety which is stress and tension … Just like diet is important and sleep is.
Dont get bogged down in what plan, what doctor to use. Dr Hain who you saw is a great doctor as is Dr Rauch. I have great success with Dr Newman. I am 95% stable all the time unless I get triggered by sleep, weather etc… Stick with a doctor and a plan and be confident. You will get better I promise. The only issue is trial and error, finding the correct medication and sticking with it several months. We all have different biochemical make ups even though we all have MAV. Thus why we all have symptoms in a different way and different medications that adjust brain chemicals making us feel different. Some can tolerate medications others can not.
Scott I have learned a lot from you and my doctors over the years. I thank you for that… Correct me if I made any mistakes.
Lisa:
Dr Newman is having a support group next Tuesday in NYC at St. Lukes Hospital. I was not planning on going but if you’re interested let me know…
I particularly enjoyed the analogy of the “big fat kid jumping in the pool”
That man has humour!
Does anyone know if Amitriptyline is prone to give more side effects, particularly from the stomach, than nortriptyline?
As some know I tried the former for only a week as it gave me gastritis, but it seemed to help the dizziness (altough it was far too early to tell, I only took 7.5mg).
This is a real breakthrough in how to hear from the experts and a really good opportunity to pool expert thought in one place. I want to say thank you so much to Scott and Dr Rauch and Lisa (got the 12 questions idea on her visit to Dr Hain and kindly shared with us). Also for this and other sites which are such a godsend.
I have had MAV (diagnosed here in London at the National Prof. Luxon clinic) now for 3 years, initially thought to be VN. I am much better than I was and that should give others hope, as I was pretty bad with nearly all the usual symptoms in extreme. Now I take Pizotifen,( having been successful with Propranolol, but had to come off due to side effects), I am still getting some symptoms and feel a bit groggy with the Pizo. and fed up with the weight gain (sorry put loss before). I have heard that there is a liquid form of the Pizo. I am wondering if I titrated down with the liquid, I could somehow trick my brain into thinking that it was still there and become drug free. Anyone tried this or come off the Pizo. and not had the symptoms come back?
I have lots of questions and some ideas, will take time to formulate them. They mainly centre around the fact that CFS/ME and migraine and vestibular problems seem to occupy the same area - I mean could they all be the same thing, or is this just a coincidence ? My mother has had M.E. for a long time and also dizziness, which was put down to a mini stroke, but now I have got similar symptoms I wonder if she has MAV to and has all along. These maladies are SO debilitating and yet so overlooked in the medical world and still dismissed at times as a neurotic manifestation - when Dr Rauch says that we now know better that it is not neuroticism, I wonder what specifically he points to to in order to refute this prevailing notion - I mean what is it exactly that we now know better ? The floating woman syndrome is a perfect and poetic description of how it feels to me (when it is not too severe).
This is just to say again many thanks and will post again with some clear questions. Thank you to those who helped me sort out my registration onto the site again.
Howie - thanks so much for your response. I understand that doctors have different viewpoints, in that one doctor for example might say med A is their first choice, while another doctor might say it is their 3rd choice. But, for one doctor to say a med is great and another doctor to say that the same med actually increases symptoms completely perplexes me. I wonder if SSRIs help migraine apart from the anxiety component. I wish Verapamil worked for me and I didn’t need to keep on asking questions. But, I understand what you mean, but just being able to trust your doctor. Thank you so much for letting me know about Tuesday. I probably won’t be able to go unless I improve tremendously by then, which is doubtful, being that I’ve been sick for 2 years - you never know - miracles do happen My husband usually works super late, and I won’t be able to drive in or take the railroad on my own. It was so nice of you to think of me, though.
Scott, thanks for asking Dr. Rauch to do this. This is very informative and it is always good to get insights on many of the specific issues that we all face. Ben
Do you think he would be willing to answer questions periodically that might come up. This information was very informative and I am sure many may have more questions as time goes on. Or perhaps if the other doctors were willing to help with questions we could submit them every few months.
I thank you for the time and effort you have put into this and appreciate his answers and perspective.
It is great that Dr. Rauch was willing to answer these questions. I’ve printed them out to add to my packet (unfortunately it’s not a very big packet) of info on MAV. As Timeless wrote above it would be great if periodically he would be able to answer more. Or if we could get input from other doctors. I know I have plenty of questions as I am sure others do, also.
Colleen - I didn’t know that pain per se was a trigger in its own right. So many possible triggers! I guess life is a trigger :? My own thought on the VN thing is that it, in my case anyway, it caused such a massive neurological upset in my brain through HUGE anxiety and a sudden acute and very heavy dizziness that was of the “just got off a spiining merry-go-round type”, that my already pedisposed migraine brain developed its full migraine potential. The positive feedback loop was kicked off like a rocket and the water level in the “pool” suddenly went from my chest, to way over my head. These days I feel like the water level is sitting around my chin but I have grown taller with Effexor.
are the doctors prescribing Effexor and SSRIs just ahead in the research.
I don’t believe so Lisa. But maybe they’ve chosen to experiment more with them in their own practice through anecdotal observation. I think doctors not using SSRIs much are relying on what the science literature has said which is that SSRIs are not effective for migraine. However, I would like to see a clinical trial done using a range of the SSRIs on patients with MAV. I have a hunch that the dizziness aspect of MAV makes it a different kettle of fish and thus SSRIs do work for some –– but not all –– people with MAV. It would be easy to say that it’s because people with MAV are anxiety-ridden and that’s why SSRIs appear to clear things up but I think there’s much more to it than that. Lastly, most docs probably like to go with what they think works a lot of the time and feel most comfortable prescribing.
Welcome aboard Georgina! Look forward to hearing from you.
Timeless - yes, perhaps we could ask some questions further down the track but I wouldn’t want to push it too much. Maybe every 6 months or so we could add 2 or 3 new questions should they pop up and we’re stumped.
Bookworm - if you have other questions or they come up over time, add them to the thread “A very kind message from Dr Rauch” although I might change the title to something like just “Top MAV questions”.
Glad these Q&As were so helpful to everyone! I know they were for me.
Great thread, Scott. I enjoyed reading through all of Dr. Rauch’s answers. Great information.
Strangely enough, it’s very possible that he might’ve been trained by my original doctor. Dr. Rauch got his M.D. from the University of Cincinnati in the late 1970s, and my original doc was one of the top docs there for years.
My original doc was at U.C. from the mid-to-late 1960s until 1984, and was an adjunct professor there until his death in late 2005. He was the first doctor in the Cincinnati area to perform a cochlear implant…around 1983. He had a private practice, and was considered the “go to” doctor in the area when regular ENTs couldn’t figure things out. Dr. Gale Miller. Great guy.
Scott,
I think what you were saying about the VN stirring up your predisposed migraine brain is EXACTLY what happened to me. Although I was never officially diagnosed with any inner ear issue, it all makes sense in how this whole mess progressed. My neuro-oto didn’t seem to think it started as a primary migraine problem, but something stirred up my dormant migraine brain and caused the constant dizziness, anxiety, etc. I am happy to report that my water level is probably somewhere at the shoulders and slowly going down, thanks to the Cymbalta. I may be a little “taller” because of it too. In any case, I have hope that this will be behind me one day…which is a wonderful feeling. Thanks for all your input and for getting Dr. Rauch to give his advice as well.
hi Scott
Just wanted to add my thanks to this - really good question and answers, and many thanks for working with Dr Rauch to get this - it’s brilliant! It’s really interesting that he really stresses that diet and exercise are not something we can ignore - we have to get the diet/exercise bit right and also the importance of regular routines and sleep.
I agree with you about the VN/labs combination - I too believe that mine could have started with the immense stress and anxiety associated with VN, on top of a strong history of motion sickness and migraine. Noone has ever said or expressed an opinion about why VN and MAV is so strongly associated and this is good to hear someone’s view. He obviously has an extremely good understanding of the whole area, which is very rare to find in my opinion.
Not so for the vast majority although I do know of one person who was able to go back to partying etc after a two-year pizotifen treatment. Rare I imagine. For most of us we will likely occasionally experience the “fat kid jumping into the pool” from time to time.
My husband usually works super late, and I won’t be able to drive in or take the railroad on my own. It was so nice of you to think of me, though.