Clarification sounds like a good idea. Good luck with your call to Rauch. Really appreciate the update again.
Brenda
Lisa,
Hopefully your conversation with Dr. Rausch will help with the clarification. One question, did Dr. Berstien offer to help you with the services for those with disabilities? If so, maybe she could help get you some assistance with the end of your pregnancy and the when the baby is born until you get your meds sorted out. If not, you might ask her how one goes about getting the services. The doctors at Mass Eye and Ear usually state right on their paperwork that they do not fill out disability paperwork which is a bit off putting, who is supposed to help if not your doctor.
Sally
Sally - I already have disability, and at this point they just need office notes, which she said she will send to them. Dr. Rauch also sent notes to disability when i saw him, thank goodness. I think she was referring more to finding out about transp to doctorās appts, etc., and I should call my insurance for that info.
I spoke to Dr. Rauch, who was very kind. He said that he referred me to Bernstein because he thought that maybe she had some suggestions about how to get me through the pregnancy w/o meds. He said that he uses nortriptyline and a few other meds, but is aware that some neurologists use a wider range of meds. He pointed out that he is not a neurologist, but an ENT, who would be happy to treat me. However, he said that if I donāt get better after a few trials, he might have me see a neurologist. It may make sense for me to consult with a neuro in his practice (mass eye and ear). anyone ever heard of or used Dr. Lewis? There is a lso a Dr. Priesol at mass eye and ear, familiar with this dx. I definitely need a clear plan or action for after pregnancy.
Hi Lisa,
I didnāt know Rauch was an ENT and not a neurologist! I must admit Iāve never heard anything good about any ENT before and tend to paint them all with the same brush. Looks like I was wrong; either that or Rauch is one in a thousand.
Iāve never heard of Lewis but he and rauch must discuss this stuff. Probably a good person to see if nori doesnāt work out.
How are you doing this week?
Scott
Scott,
yes, Rauch is an ENT, who specialized in otology/neurotology.
doing horribly, as usual. thanks for asking, though. trying to just take it one day at a time until I have this baby and can then take meds.
Lisa
Lisa: I see Dr. Priesol at Mass Eye and Ear who I believe is an oto-neurologist. I really like him, easy to talk to, he spent a lot of time just talking to me. I didnāt feel like I was rushed out of his office at all. He also told me he is available by phone. The one time I did call him, he returned my call within hours. For me he suggested the migraine diet and lifestyle changes which I have been doing. He told me if I wanted to try meds the first one he would suggest is nortriptyline. I think you would really like him. I think someone else on this board has also seen him.
Hopefully he will have some good suggestions for you.
Hang in there. Sounds like you are getting closer to the right person to give you a solution.
Joan
Joan - I actually did see Dr. Priesol a long time ago when this first started for a consultation. I was living at NY at that time, and ended up finding a doc closer to home after I saw priesol. he was very nice and smart. I will probably make an appt with him again.
I have seen Dr. Lewis a number of times. He is a neurologist who is well versed in both MAV and MdDS, I still never did find out how he truly tells the difference between the two.
Good luck with your appointments whomever you choose to see.
Sally
I was able to make an appt with Priesol in December versus March with Lewis, so I will see Priesol. Sally - just wondering what med Lewis recommends. I know Priesol recommends nori. wondering if all the neuros at mass eye and ear who treat this prescribe nori as their first choice.
I am wondering why most docs prefer the Nori to the Ami? I am on Ami now, and that is mostly because I have trouble sleeping. But I wonder if thereās a difference in how it affects the MAV symtpoms ? Anyone try BOTH meds and can differentiate?
Nortriptyline supposedly comes with fewer side effects and so they usually go for this one first. No doubt the opposite would hold true for some people though. S
I think many docs prefer ami as it is FDA approved for migraine treatment. Not that this means it is better, it only means that the makers of ami went through the process to receive this approval. Nori is theoretically supposed to have fewer side effects. Both are good drugs and still prescribed regularly for migraine and itās variants.
Dr. Lewis prescribes based on your prior experiences. He is very difficult to get in with as you found out. When I was first in contact with Dr. Rauch he prescribe Verapamil not nori. Iām not sure when that changed.
Sally
I was on both. I started with amitriptyline and had good results but I was tired all the time. My doc suggested trying nortriptyline & I got the same good results without the fatigue. I think they are very similiar. At least that was my experience.
thanks for the replies. I have some insomnia issues (and anxiety) so the Ami was the way to goā¦but I am a bit tired and the dry mouth is starting after 4 weeks. Dizzy as ever, so I am wondering if I need to titrate up, or add a new chemical. I am waiting for Dr. Hainās advice on that one.
ps
Just read the article on MARDā¦very interestingā¦Thanks to George for sending it!! 
I swear I get anxiety first thing when I wake up and off and on for no apparent reason. I am seeing a therapist and she wants to know what is setting me offā¦well, besides worrying about my health, NOTHINGā¦it seems purely chemicalā¦so confusing!!!
Hi Rockysmom,
I get that āout of the blue/no reason for itā anxiety too. It feels physiological rather than psychological if you know what I mean. I find that if I can ride it out it will often go away of its own accord. If it goes on too long or is too bothersome 2.5mg of Valium kills it.
Victoria
Dizzygrl - what dose are you taking of nori? so glad that you are having positive results. If you donāt mind sharing what your symptoms were before and in what ways you have improved I would greatly appreciate it. thanks.