I have been fighting Meniere's for about 2.5 years to far. I have had two vertigo/vomiting episodes widely spaced, dizziness attacks, fullness and tinnitus. The latter three are worsening lately: daily dizziness, fullness and horribly increased tinnitus so loud it wakes me from sleep at 3 AM. So far I have tried acyclovir, prednisone, betahistine (serc), diuretics, low salt diet, and betahistine. None have worked. Now I am about to try Pycnogenol specifically for the tinnitus (which is becoming maddening). My next step is to see an ENT who uses low dose gentamicin but I have no idea how to determine which docs offer that treatment before making an appointment. If anyone can name a doc in the greater Seattle area who uses the low gent treatment or can suggest a way to determine that before scheduling an appointment, please share.
I would call U. Washington. I am a big believer in teaching hospitals. I also believe that is where the first vestibular prosthesis was implanted. Good luck!!!
A little outside your neighborhood, OHSU in Portland has a tinnitus clinic that might be helpful: http://www.ohsu.edu/xd/health/services/ent/services/tinnitus-clinic/tinnitus_facts.cfm You don't mention anything about hearing loss, which is typically part of a Menieire's diagnosis. An ENT with subspecialty of neuro-otologist is best qualified to deal with vestibular disorders, vertigo, and Meniere's. Personally, I haven't heard of gentamicin being used as a treatment specifically for tinnitus, but it can stop vertigo. If may damage hearing in that ear, however. Tinnitus is not the highest priority for me, but perhaps others may know more about it. Best of luck to you.
I haven't lived in that area for about 5 years but when I did after I was first diagnosed I was treated by Dr Seth Schwartz at Virginia Mason. He was considered one of the specialists for the area. He was the one who immediately prescribed the Ativan to place under my tongue at the onset of an attack that shortened the length of the attack significantly - which to me was priceless. Sucks for sure having ANY attack but knowing it would "only" last a couple of hours vs 6+ is at least "something". I have no idea about the gent treatment because at the time I was early in the disease and it was considered too early to think about destructive treatments. Good luck
Tet, I'm a bit hesitant to suggest this, but I would look into seeing Dr. Douglas Backous. He is a highly skilled Neurotologist, but on the flip side he's also about the most arrogant, insulting prick you'll ever meet. He performed the Laby I had back in '09, and also diagnosed me when I went bi-lateral. He's a good doctor...providing you can tolerate his bedside manner.
************************ Thanks very much to each of you who made suggestions. Since I asked the question my dizziness and vertigo attacks increased substantially. Finally, I decided I needed to try something more intrusive. In the end, I went to OHSU in Portland and saw Dr Hullar. He wanted to do a endo sac decamp surgery, but that didn't make sense to me given the inherent risk of head surgery and a study I read that shows it is ineffective 25% of the time. Instead, I opted for the low dose gent treatment. He gave me the injection in Oct and since then I have had neither the daily dizziness nor any vertigo attacks. On the other hand, I feel permanently out of balance so far. I found out after the injection that 22% of people who get the injection feel off balance 2 years after. I take that to mean those people are always going to feel that way. Was it worth it? I debate that myself. I can function better now than before, but at the price of feel somewhat less crappy than before all day, everyday. My take away from all this is that for some people, there is no happy resolution or return to normalcy. Good luck
Tetburyman, overall how was your experience with Dr Hullar? I'm in Seattle area but see that OHSU is ranked top 25 ENT and his credentials are top shelf. Would you recommend? Thx
Sorry to be so slow responding. Yes, I would recommend, Colin. He was recommended to me by an ENT guy at a Chicago dizziness specialty practice named Dr TC Hain. Hain has the best web site / blog re Menieres I have read. Hullar is only doc I have seen that I felt understood Ménière’s, had a plan to treat and didn’t give me the feeling he was reading off a script, like a call center person. I have to say, however, not to get too optimistic. The gent stopped my vertigo episodes and dizziness at the cost of 7 x 24 unsteadiness that varies from irritating to got-to-lie-down plus two episodes in last week of nausea, sweating and too unsteady to walk. Kind of like the rotational vertigo attacks without the spinning. I don’t mean to be downbeat but only accurate in saying that with a condition like Ménière’s everyone is flying in the dark making outcomes uncertain.
Dr Dick Hoistad. I think he practices out of Bellevue. He is a great surgeon and last time I was in Seattle I met with him and he said gent injections were something he can handle
An update. A couple of weeks ago I woke up twice having rotational vertigo episodes: vomiting, sweating, unable to stand, super woozy. Only difference is the "rotational" part is less intense than it was before the gent shot, otherwise more or less equally debilitating. I reached out to my ENT doc and he suggested another gent shot is in order. After a couple weeks of reflection, I'm not sure I will do. For me, at this point, the issue is much more the 24 hour a day unsteadiness and feeling constantly crummy. If another shot stops the intense episodes but leaves the constant unsteadiness, I don't think I see the point; it's winning a battle but losing the war. I have queried my doc about the likelihood of another shot addressing the ongoing, daily problem. If he cannot give me a reasonable assurance that will happen, I'll pass. I'll update here when I have learned more.