Just wanted to give everyone an update. I saw Dr. Priesol at Mass Eye and Ear yesterday, and was very pleased with the appointment. He treats many MAV pts, and I was impressed by his knowledge. He also had an excellent bedside manner. He definitely gave me some more hope, expressing that he sees pts as sick as me who get better (I am currently bedridden most of the day). In fact, he relayed that he loves his job because he is always helping pts with MAV. His first choice in med is Nortriptyline, but also uses many other meds. He likes Topamax, and has found success with Neurontin at times as well. Beta blockers aren’t his favorite, but if uses he recommends Atenolol. Similar to the majority of docs that I have seen, he does not think that SSRIs are effective for MAV, but feels like Effexor works at times (but doesn’t like withdrawal profile of effexor). Again, just his opinion. I know others have found success with SSRIs. I am due on Feb 10, and will call him as soon as I am ready to start meds after that. Will most likely take Nortriptyline, but have some time to think about it. I took Nort in the past, had many side effects, but am more than willing to get through the effects to get better. That’s about it for now. Will have more updates in Feb after I start the meds.
Great news Lisa. I’m very pleased for you. Finding such a doctor and gaining new hope like that is fantastic. February is drawing closer and not only do you have the joy of a new baby to look forward to but also the knowledge that your present MAV suffering will diminish once you are able to take meds. Losing hope and then finding some again is a real tonic. Wishing you all the very best …
Brenda
Hi Lisa,
I was so happy to hear about your appointment, this doctor sounds like a great find for you, I hope you have found someone who can walk with you step by step when you are able to start the meds , and has a clear idea of what could help you. You sound a lot more positive and hopeful than I have heard you before. I hope this gets you through the next few difficult months.
I know that when my doctor looked me straight in the eye at the end of our first appointment and said to me " you WILL get better " it meant so much.
Take care and thanks for sharing this news.
Penny
Hi Lisa,
This is great news. So glad you found someone who you think knows their stuff and you feel good about seeing. Sounds like he’s on the same page as Rauch. No doubt they share knowledge on this. What happened last time you tried Nori?
Only 2 months to go and you can start hitting this thing.
Scott 
thanks everyone.
Scott - I only got up to 20mg on nort. started with 10 and increased to 20. upon starting and increasing, i was much more dizzy for about 10 days until my body adjusted. Also constipation, dry mouth, sedation, etc., but I will do whatever it takes.
— Begin quote from “MAVLisa”
Just wanted to give everyone an update. I saw Dr. Priesol at Mass Eye and Ear yesterday, and was very pleased with the appointment. He treats many MAV pts, and I was impressed by his knowledge. He also had an excellent bedside manner. He definitely gave me some more hope, expressing that he sees pts as sick as me who get better (I am currently bedridden most of the day). In fact, he relayed that he loves his job because he is always helping pts with MAV. His first choice in med is Nortriptyline, but also uses many other meds. He likes Topamax, and has found success with Neurontin at times as well. Beta blockers aren’t his favorite, but if uses he recommends Atenolol. Similar to the majority of docs that I have seen, he does not think that SSRIs are effective for MAV, but feels like Effexor works at times (but doesn’t like withdrawal profile of effexor). Again, just his opinion. I know others have found success with SSRIs. I am due on Feb 10, and will call him as soon as I am ready to start meds after that. Will most likely take Nortriptyline, but have some time to think about it. I took Nort in the past, had many side effects, but am more than willing to get through the effects to get better. That’s about it for now. Will have more updates in Feb after I start the meds.
— End quote
Sounds like an excellent doc.
Keep us posted and keep your chin up.
Lisa,
So glad to hear you had a positive appointment! It sounds like Dr. Priesol really knows his stuff and will work to help you get better. I wish you all the best. Good luck with the rest of your pregnancy and please keep us posted on how you are doing.
Best, Colleen
Lisa,
I sure hope that he helps you find the relief that you so seek and deserve. It has been a rough year and hopefully next year will be totally different for you.
Timeless
Lisa: I am soooo glad you got some comfort and encouragement from Dr. Priesol. I really like him also. He has a tendancy to calm you down and bring you back to reality. Hopefully you can now enjoy the remainder of your pregnancy and look forward to a beautiful new baby and a beautiful new you in the New Year.
Joan
thank you very much, everyone!