Hello all, I am new here and have found many interesting posts and topics - especially those WRT the etiology of symptoms and virus link. Over the years (37 and counting, since I was 23) I have been diagnosed with 1. Labrynthitis, 2. Recurrent Labrynthitis, 3. Recurrent sinus infection, 4. MAV, 5. vestibular neuropathy, 6. MAV, 7. BPPV As you can see I have not been diagnosed with Meniere's. My opinion is that I do not have an actual reliable diagnosis despite the aforementioned pronouncements. Since I am becoming virtually disabled due to vertigo episodes lasting upwards of 6 months and recurring at an alarming rate (last vertigo-free period was only 3 weeks), I am becoming desperate. I ignore the constant fullness in my right ear and the low-level tinnitus, but I cannot ignore the sudden onset of vertigo when I am on a ladder or in my kayak (so I have had to severely limit my work and give up my kayak instructor's certification). I have been participating in VRT to help with balance (bad even when I don't have active vertigo) and last week I was symptomatic so the therapist put me through the diagnostic maneuvers (which provoked vertigo). She said that I "definitely' have BPPV and that she was going to have me go through the Epley maneuvers 2-3 more times. She said that the vertigo would be triggered each time but get progressively less intense. I had the opposite experience; each time the vertigo got very much worse so that after the 4th time I could not even hold myself erect in a sitting position. I had literally collapsed. It took four days for the nausea to subside and I could not even consider laying down for 24 hours. I don't want to go back (have another appointment tomorrow). So my question to anyone here is regarding your diagnosis - did it take a long time to get a diagnosis that fit? It seems that many vestibular issues can co-exist, does anyone have diagnosis of multiple issues? How do you have confidence in a diagnosis? TIA - and best to all
Hello JPinVT, I'm a newbie here myself, but I wanted to tell you that my diagnosis came from my hearing loss in the affected ear. (You don't mention hearing loss, but perhaps that goes along with the fullness and tinnitus?) Since it came on suddenly in 2010 for no apparent reason and involved the lower range, I guess that made my ENT suspect Meniere's. Then last summer I suddenly began having horrible vertigo/vomiting attacks and that clinched the diagnosis. From reading everything I can find on this forum, I discovered the treatment that has been successful for many--antivirals--and that has made a world of difference for me. BTW if you happen to live in Vermont I could recommend my ENT, who has been extremely helpful and willing to listen to what I have learned on this forum. Wishing you all the best, Earwig
Thanks Earwig, I AM in VT - and I may need the referral. I will be raising the viral link at my follow up later this month and see how that is received. Since we are basically throwing things at this, he might be willing to give it a try. Dr. is unhappy because I have refused some proposed treatments (anti-depressants, valium, calcium channel blockers) and failed miserably on others (topamax, antivert, scopalamine). Thanks for your reply
JP the study that discovered anti-virals are effective against Maniere' s was done in MA. Not too far from.you if you get.desperate.
I think one of the best things you can do is keep a food, symptom activity journal for at least a month. This will help the doctors determine where the symptoms are stemming from and give you a better chance at a legit diagnosis
The journal is a great idea, Loo-Hoo. I have done it for some stretches several times, esp. when I have tried diet restrictions / meds / botanicals / supplements. It does get you more attention than just talking in the abstract. It also helps me remember what seemed to have an effect.