So much stress here, don't know what to think. Hopefully tomorrow will be a quiet day. I know I have Menieres, I just don't know about MAV. It sounds like you would have a lot of headaches and I don't. I'll just have to wait for Dr appt. Thanks Vicki, you do a lot for this board and I appreciate it!
I never get headaches and I have MAV as well as MM, that's a big misconception about MAV the most common form is w/o a headache.
Good luck tomorrow Bea. You are always so helpful and encouraging to others here I hope for the best for you.
Many years after getting MD and having it so long my vertigo ceased, I began getting new weird symptoms that seemed to fit MAV. My doc ( PCP) agreed and put me on Topamax and i followed the Heal Your Headache diet. The diet alone seemed to do little but with Topamax I got some relief. Interestingly as my MD has improved from a treatment im on (dont ask) the MAV like symptoms are 100% gone. I know there is supposedly overlap between MAV and MD but in my case, and I suspect in others too, whats causing your MD is at the root of the MAV symptoms.
Here it is. Dr. Says my symptoms recurring, although not severely is caused by allergies. Wants me on Zyrtec for 6 weeks before he would consider meds for MAV. For MAV the sensitivity to light experience would lead him to "think" it may be MAV. I have a huge perforation in my right ear from when the tube fell out and it didn't heal. I have a small perforation in my left ear for the same reason. I will need Tympanoplasty on both ears... This Dr doesn't do it. I'll have to travel 75 miles to see my old Oto who does. Quite frankly she's a much better Oto and is well informed on all things Menieres. When asked if I might do better on Valcyclovir he said he's never heard of it used on Menieres patients and the only reason he gave it to me was that I was on it already from my old Dr. I only went to this Dr. To keep my script for Acyclovir going and to have an Ent close to home. Turns out that wasn't the best choice. So back to my old Dr where I can get better answers to all of my questions and schedule the surgery. Meanwhile I'm taking Acyclovir, 400mg. 3X a day again and the Zyrtec everyday. Thank you all for your posts and well wishes.
I was watching this thread as I am a sufferer of MAV, migraines, cluster headaches, and now possible MM. I just wanted to say that sensitivity to sound is also a characteristic of MAV (not just light sensitivity ). For me that felt like I had to turn radio off in car, and kept telling my family to be quiet or whisper. It is different from hyperacusis tho. That said, it would only happen at the worst of my disequilibrium spells. But I felt off kilter all the time until I did the diet and went on propranolol as a migraine preventative. Oh also, I would have trouble "finding my words", having a very hard time communicating as well, which is classic for migraine. And no headaches with these symptoms, although I do get headaches other times.
Bea, FYI The Dr Saliba who developed that new out patient surgery for Meniere's the EDB developed a new 20 minute surgery a few years ago for perforated ear drums a few years ago. http://globalnews.ca/news/200154/new-eardrum-perforation-technique-may-replace-long-and-costly-procedure/ the article above says Dr. Saliba says the technique is starting to be known by Americans and Europeans. Interests in using the technique in Toronto have also been rising and that was stated in 2012. Just some info for you ya. It is all over google searches called HAFGM technique TORONTO – Childhood ear infections left Benjamin Cote’s ear drum 50 per cent open and his middle ear so exposed that he couldn’t shower normally or go swimming with his friends due to the risk of infection. His hearing also suffered. Traditional techniques to fix his eardrum would have been costly and time consuming. Thanks to a new surgical technique called hyaluronic acid fat graft myringoplasty (HAFGM), he was able to have a quick and cost-effective surgery. Myringoplasty is a surgical procedure to repair the eardrum when it has been perforated or punctured. The new technique, developed by Dr. Issam Saliba at the University of Montreal’s Saint Justine’s Children’s Hospital, requires only basic materials: a scalpel, forceps, a probe, a small container of hyaluronic acid, a small amount of fat taken from behind the ear, and a local anesthetic. “In other techniques, it’s about an hour or an hour and a half in the operating room,” said Dr. Saliba. “We can do this technique without any hospitalization..under local anesthesia in 20 minutes.” “It’s safe and we can save more than $1,500.” Advertisement Global News The operation, which is performed through the ear canal, allows the body to rebuild the entire tympanic membrane by itself after about two months. “The hyaluronic acid can improve healing of tissues, the fat plays the role of the support for the migration of cells from the ear drum remnant,” said Dr. Saliba. “What happened with prior cells, if you just use the hyaluronic acid with no support, the cell [was] dead.” Dr. Saliba says the technique is starting to be known by Americans and Europeans. Interests in using the technique in Toronto have also been rising. Dr. Vincent Lin at Sunnybrook Health Sciences Centre in Toronto says he’s looking at using this technique as wait times can be long. “For surgery, it would take a year and a half to get this done,” said Lin. “If I could do this in the office, then I could get it done in 3 to 6 months.” The success rate of the operation has been promising. In adult patients, it is a 92.6 per cent success rate, while in children like Benjamin, it is 85.6 per cent. The research is based on a four-year study of 208 children and adolescents, 73 of whom were treated using the new HAFGM technique. This study was published on December 16, 2011 in the scientific journal Archives of Otolaryngology
Thank-you Vicki. The Tympanoplasty is not so bad. They just put a little slice behind the ear to use the tissue to repair the perforation. No hospital stay and they put you to sleep, which I prefer. Our insurance will cover this until the new insurance kicks in in January. However, if my Oto says this next technique is the way to go, I trust her implicitly. She's the only Oto I've ever been to that knows more about Menieres than I do, thanks to this board!