My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).
As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections. However, he did send me to vestibular rehab.
I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control. I can’t say I’m having fewer migraines but they do seem to be less intense. It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack. (If the vertigo is caused by MAV then gentimiacin will not help.) You may recall that I had seizures in February that caused me to be hospitalized. My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures. It appears this may have been my problem. I’ve since stopped taking Topamax and the seizures have subsided.
The vestibular rehab is going well. I haven’t been to a lot of sessions yet, but so far so good. When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver. This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me. (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.) After this treatment I have had very little BPPV symptoms. On the way home from the first visit I had a bad vertigo attack that last hours. Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out. I still have a few sessions to go before being reevaluated.
Now, about the doctor situation. I will be seeing a new doctor on the 22nd, next Tuesday. It’s kind of amazing how I found this doctor. Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday. When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues. I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that. They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.
I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service. (they will only map CI patients who were implanted by their office) As luck would have it, her husband works for this medical group. He is an otolaryngologist. He is new to the office and is working to get things better there. He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing. He told me he would be happy to take me on as a patient, or he recommended another doctor in the group. He just wanted me to have a good experience there. Wow. I decided to go to see him. He is very willing to confer with the doctor at John Hopkins. He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work. I think it’s more complicated than that, but that’s a big part of it. The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there. Is that just a lucky thing or what? I’m so happy I reached out to her, you never know who may be able to help.
How am I feeling about my treatment? Good, so far. I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections. I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines. I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21). Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.
So, that’s where I’m at right now. Very grateful everything is going so well.
photos by W. Holcombe 2016 all rights reserved.