Hi all, I am new here and want to first of all thank Brian b for introducing me to this forum. I will post my story when I am feeling better, right now the computer is not my friend.
My question is this, can a person have MAV and also have Positional Vertigo, not necessarily BPPV but if I lay down flat the room spins, tilting head back the room spins, looking up or going to have my hair done and having to lean back in chair to have hair washed the room spins. I have had 8 weeks of epley treatments because they thought it was BPPV but now leaning more toward MAV. My symptoms are many if not almost all of what is listed of a person with MAV but the only thing I am confused about is the positional vertigo and whether or not a person with MAV can have that? I was also told that during the epley the therapist said that she did see nystagmas in my eyes but I have no idea if it was an upbeating or downbeating or if that matters at all. Also, I had a VNS (Vestibular Nerve Section) in October of 2006 and the positional vertigo is more prominent on my āgoodā side so that is why they thought BPPV as a possibility but nothing has worked to shift any crystals that I may have. Hoping to get some feedback. I have had 2 ENGās to test the āgoodā ear to make sure I wasnāt going bi-lateral Menieres, thankfully I am not.
I am seeing Dr. Hain for the first time next Thurs Sept 5th and I really hope he will be able to help meā¦from what I have read about him he seems to really know his stuff and I pray that he will be able to give me some answers. Thank you. Will post more later.
Ginaā¦i was told by Dr. Robert Baloh (the doc that diagnosed me at UCLA)ā¦said that yes it is possible to have both. Personally i believe i started out with a severe case of Benign Positional Vertigo and it evolved into Migraine Equivalent. But maybe i still have both although the vertigo has calmed down significantly over the last few years?? So many questionsā¦very few answers.
I agree with the so many question, few answers bit. After 20 years of all the tests at ENT, which they thought was menieres, then not, then a vestibular lesion, then migraine. When I was given the ECOG test it produced the worse vertigo attack ever, I was hospitalized overnight as they could not sit me up for hours. Then the migraine specialist said it might have been that I was just bad at the time I had it done. I am of the conclusion that something goes on with the arteries from the back of the neck to the ears, I had a friend who lost her hearing in one ear and they said the migraines caused it.
I have the positonal thing. I can only sleep on my back propped up with 3 pillows. I gave up trying to sleep on my side as although easier to fall asleep like that, if I do, I invariably wake with a dizzy spell trying to turn over.
I have positional vertigo, but it is not BPPV. I have been tested three times for BPPV and it always came up negative. I am just like you describe, canāt lay flat on my back, canāt look up quickly, canāt say anything about having my hair washed at the salon, but the idea of that head position makes my stomach want to crawl up my throat. :mrgreen: I also canāt turn my head to quickly, or come up from a bent over position to quickly.
The doctors seem to vary on their opinion on this, but the nuerologist who diagnosed me told me that it is real common for people with MAV to be misdiagnosed with meniereās or BPPV because symptoms of both can show up.
BTW, from what I read on your post on the meniereās thread, I think you are in the right place. Hopefully Dr Hain will let you know when you visit him.
I have a classic case of MAV but also get symptoms, or used to before treatment, from positional changes such as looking up, turning my head too fast, nodding yes or no. And i have no other Dx, except possibly overlapping MDD.
Donāt be surprised when youāll actually spend most of your time with Hainās associate Cherchi (sp?). Iām told that Hain comes in at the end to give his blessing, but my niece went there twice and never laid eyes on him.
Good luck with your visit and treatment and welcome to the forum.
Thank you for the welcome and the repliesā¦
I hope they can figure out what is going on with me, from what I hear the clinic itself is overall the best place to go for this type of thing. I do hope I get to see Dr. Hain as I have heard SO many good things about him, when I made my appt. I was told that I was scheduled with both Drās so maybe I will spend most of the visit with Dr.Cherchi and then see Dr. Hain at the end. I know that this to me is the last resort as I have tried everything and have been left with these symptoms that have altered my life greatly and I need to figure out if there is something that can be done for me.
I will post after my visit to let you know how I did. thanks again for the information and feedback, I really appreciate it.
Gina
I know your history from the MM board. I think Dr. Hain is a very good choice considering your history. As Julie alluded to, however, do your best to make sure you get his undivided attention. Very, very important that he knows everything that has occurred from DAY 1 until the present to arrive at the most accurate diagnosis. As you know, heās a neurologist by training----did a Johns Hopkins fellowshipāand is extraordinarily astute in differentiating pure neurological etiology from other etiologies. In my opinion, one of the sharpest in the world in that regardā¦butā¦he has to be tuned in directly 110% to you, and not getting information second hand from someone else. Youāre making a long trek to Chicagoā¦you deserve that respect.
Before your appointment, if you have timeā¦and I know you have some tough, tough daysā¦more than most can imagineā¦try to sit down, and write down some questions for Dr. Hain that you can ask him at the appointment. Questions youāve always pondered, but perhaps have never asked of other doctorsā¦or even fellow patients.
In person, Dr. Hain is very, very humble and low key, but also extremely astuteā¦almost like a savantā¦howeverā¦because he is so busy and so heavily in demandā¦itās easy for him to become sort of like an absent-minded professor afterwards. Get as much out of that appointment as possible, and try to keep that communication pipeline with him nice and clear after that.
Extremely well put! And very generous of you. Iāve only met him by phone, but get the same feeling. I was so nervous at first but within 60 seconds relaxed. You could feel how humble he was right through the phone, but i felt his focus on me. In fact, the letter that he sent me regarding our phone consult was the most accurate consult letter Iāve ever read.
And the part about the absent-minded professor - after we were done he wanted me to make an appt in six weeks. I asked if he wanted to call back in or if he could transfer me. He laughed quietly and said softly āI donāt know howā
And about the go-between. I have my next phone consult in two weeks and I made sure that I would get Hain and nobody but Hain. :!:
I meant to post earlier regarding my visit with Dr. Hain on Sept 5th but couldnāt find the thread where I wrote it until nowā¦ brain fog I guess!
Well, the trip was a nightmare (6 hours in the car) as I expected even though we tried to break it up a bit I still got sick, once I finally arrived for my appt I was vomiting in the clinic so they brought me back to a room and gave me zofran right away to settle my stomach, Dr. Hain came in and it was just him, I thought maybe I would be dealing with his associate Dr. cherchi but Dr. Hain told me that my case is extremely complicated and a long one so he wanted to handle it himself and consult with his associate later.
After basic discussion he did do the hall-pike on me and not only did I get the obvious positional vertigo that I have had every day since December of 07ā but he also said I did have nystagmus so he diagnosed as BPPV and after i explained that I have had intense therapy at the hospital doing the epley manuvuers and using the mastoid vibritor thing behind the ear that nothing was able to move the crystals and the therapist started to doubt that it was BPPV but possibily related to MAV, Dr. Hain said that positional vertigo indeed can be related to MAV but only if the dix-hall pike is negative and there are no nystagmus so he gave me a dvd with epley exercises on there to try again for 2 weeks, well I did that every night and still nothingā¦ is it possible to have stubborn BPPV that just will not resolve??? and if so, what can you do? I canāt have the canal plugging as the BPPV is in my āgoodā ear as I had a VNS done on the other one and he said surgery of that type on that ear would not be a good idea, so now Iām stuck with these stupid crystals and I canāt get them to budge. how frustrating is that.
Dr. Hain gave me a precription for Effexor which I just started (was waiting for approval from insurance) yesterday but it is a low dose and then increasing up if I tolerate it. iām hoping I will tolerate it and will be able to get rid of not only these headaches but possibly the rocky boat sensation and dizziness that I have every dayā¦ some ppl have said that they have had that happen with effexor so I am keeping my fingers crossed.
I also was given a prescription for SERC but was told to not start that until after taking the Effexor for a month to see how I do, I think the SERC works on some of the dizziness issues associated with Migraines but Iām not sure. anybody know?
So that pretty much sums it up for now, I will keep you posted. thanks for the replies.
Gina
Julie, you mean there is someone else out there that has stubborn BPPV??? I canāt understand it, why wonāt those stupid crystals go back where they belong?? I thought I would be able to get them after maybe one or two epleys but i did 2 months of treatment 3 days a week and the thearpist basically threw her hands up in the air and said she didnāt know what to try nextā¦ did the log roll, did the seamont manuveurā¦ nothing will move them. they are just stuck there and at short of banging my head against the ground I donāt know what to do. If youi see Kira around please ask her to PM me so I can talk to someone else that is trying to deal with this. Thanks so much.
Gina
Actually, the person I know with intractable BPPV DID bang her head against a wall, because she is even more stubborn that those crystals and she says she probably did even more damage. Sheās has given up on physical therapy, in fact, i believe she said that her doctors have told her NOT to do any more physical therapy.
Julie, I have been tempted to bang my head down on the ground or something but I never actually did it!! wow, thatās somethingā¦ i donāt know if i should keep trying the epleys and maybe one day it will work, I really think the crystals are just stuck somewhere in one of those canals and itās been so long that they just are not going to budge, i donāt understand it but there is nothing more I can do, I plan to talk to dr. hain about it via the email but sometimes he doesnāt get back to you for a few days so iāll have to see what he says.
Gina
