Hi Everyone, Been doing so much better but last week the BPPV spins started. Decided to hop on a plane and head to see Dr Derebery tomorrow. Say prayers that she spots something new to help me with this entire colection of MAV, BPPV and Meniere's I get back on Tuesday next week and I'l let you know what I find out. Holly
Wow! Prayers sent. I very much look forward to finding out what you learn. Such a shock for me about you deciding to hop on a plane. My version of this mess of conditions makes it such that I wouldn't dare go on a plane--I am very sensitive to pressure changes. I had resigned myself to never flying again, but now I hold out some hope I might. I'm a long way from attempting that. Anyway, it is so great that you can do that, and that you will see what she says. Does the Epley maneuver help you?
Sending prayers and positive thoughts Holly! I hope the good doctor can help sort things out for you. Safe travels and best wishes to you!
Bythebay, i had the same concerns about flying. A decongestant and a little neosinephirne before boarding might help. I finally decided that since i was going to house, if anything did go wrong, i would be in the right place to have it addressed. After about 2 years of allergy shots i no longer had problems with flying.
I had such an awful experience with airplane travel and my ear, even with precautions like decongestants, I won't try it again for a long time, if ever. Even just driving around town if I have elevations changes of a few hundred feet my ear can get plugged up for days (fortunately with pressure regulating ear plugs, I can handle that). If I ever go do Dr. Derebery it will be by car or train, with ear plugs.
Mine was scary in that my hearing was not right when i landed although it self corrected in a couple of hours. 'Ear planes' ear plugs didnt hlp though neosinephrine did. That was in 2008, 2009. I thought i would never go on a vaca that involved flying. By 2011, i flew to ireland with no meds and no symptoms. It was three years of allergy shots that made the difference. I have not had any problem since but i still get allergy shots.
I saw Dr. Brackmann at House Ear Clinic one summer and it was because i heard he was a straight shooter just like Dr. Rauch and he sure was. He told me i was clinically disabled from mm and if i were you and had an ear like yours i would take it out. i listened to him and am glad i did. I also consulted with Dr. Rauch, Dr. Della Santina @ John Hopkins, Dr. John Emmett @ Shea Ear Clinic and finally made the life changing choice to have Dr. Douglass Mattox at Emory fix my problem. I have never met Dr. Derebery but i like Doctors that don't try things just because they "think" it may help, i like doctors that will fix my problem, which was vertigo and i will deal with the after effect and make any changes to my lifestyle that i need to make, but i want my problem fixed forever. Just my mentality. if i had to i could use a cane or scooter, but no way in fucking hell am i going to be homebound by vertigo or dizziness when there is a fix for it. Fuck that! I trust my body and brain will make the necessary adjustments and like Dr. Rauch told me, God gave me 3 balance systems and i only need two to live and productive life. Just go off the phone with Larry/Hurricaneone and he told me "i will call you back, i am playing golf" Don't let this shit ruin your life.
Thanks everyone for your replies. I waited until the morning before to put it all together to make my appointment knowing I was clear enough to be able to pull it off. Just taking proactive action makes me feel stronger and my ear was great until about the time I saw Derebery. So, she def says MM. Migraine playing a role perhaps but she is not expert in migraine but migrsine is in a larger % of MM sufferers that the population in general. My hearing test yesterday showed another marked improvement although I coulda told 'em that She strongley encouraged three things for me. Get on a Betahistine trial (will post something on that under a new topic), switch to Famivir and try the other two migraine pervention drugs. She explained that they all work on very different channels and that it might really help. Since I had such horrid drug reactions to the two Kaiser insisted I try, I must say I am relectant. Will noodle on this until I get back to SF next week. She didn't suspect much allergy influence with me. She did say the AV's were the best treatment for hearing recovery. This has been my experience too. I mentioned being on JOH regimen for almost the same amount of time and she nodded. She thinks maybe the shots in the eardrum if things get worse again. Derebery is for sure the most knowledgable and direct MD so far on this. She explained things that weren't well explained at Kaiser but she said she though their protocols were on the right track. That it itself was worth the trip. Generally, I am at 90% most of the time with a headache and ear wanging between 3 and 4 pm which I either need to medicate a bit or it passes if I stay moving. Been climbing a lot of hills and long walks are helping my recovery. @BTB, for some odd reason I haven't tried the Epley. I trust that. The spins are gone and were never out of control. Dr Y is sending me to a physical therapist how will show me exercises. Hugs to everyone!
Sounds like a productive visit You can get serc (Betahistine) with a script if your in USA from a compounding pharmacy like in walgreens. Many insurances cover it too. I am curious that she told you to get in a trial of Betahistine, I didn't know they were doing that in the USA..good to know. Did she run allergy tests on you?
I took her script right to the compounding pharmacy at House. $98 for a 30 day supply :'( As stated, no real allergy component suspected. She was more concerned about the migraine componenet.
Sounds very productive. I'm very curious to see how it all goes. Good for you for making that trip happen for yourself! Was Dr. Y able to send you to a PT in SF? Do you have allergies and Dr. D just doesn't think they contribute or are you not an allergy person (like so many of us)?
Yes I have an appointment on Feb 9 although the spins are gone. Derebery didn't suspect allergies because they are not a super big issue before the MM diagnosis. Feeling good today.
Well, thank goodness they are gone--that would be a long time to wait if they weren't! Did she have anything to say about famvir v. valacyclovir? Does she expect it to be a big difference? Thanks so much for sharing about this.
Thank you for your post! Wishing you lots of success with this new treatment I would also be interested in the difference between valacyclovir and famvir. Did the Dr mention anything specific? thanks
Dr Derebery thinks the famvir is the best antiviral for MM based on clinical trials and her patient reports. Something about how much better it bases the blood-brain barrier. Since my hearing is still improving with the valacyclovir, she said 'if it ain't broke don't fix it' and wrote the prescription anyways. Hope this is helpful.
That's interesting I haven't seen any clinical trials for famvir and MM except an older one in the early 2000's by her, which results said it didn't help vertigo but helped with hearing http://www.ncbi.nlm.nih.gov/pubmed/15577784 I have no doubt famvir works well from others experiences but would like to see those trials.
The trial did not say it didnt help vertigo. It said it was not proved. During that trial for inexplicable reasons, no on either on the placebo or famvir got vertigo. It seems to often be mis interpreted as proving it did not work for vertigo but that is not the case. As for hearing, results looked promising but since the study was not designed to test it's effect on hearing, the study was not statistically weighted to asses that so no claims were made. Dr D has been using antivirals with mm patients for years and famvir remains her av of choice.