Update On My treatment

On By WendyIn Chronic Illness, Cochlear Implant, Deaf, Meniere's Disease, vertigo, Vestibular Illness

dandilion flower

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.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.

14 thoughts on “Update On My treatment”

  2. Sounds like a good week and a lot of good news. I’m so glad access to a close ENT/Otolaryngologist opened up for you and I hope you like them. Everyone really NEEDS to like their CI mapping office LOL! I have BPPV too and last summer at vestibular rehab they wanted to do the Epley. When they explained what they would do I never went back and had nightmares for a few nights. I go to these appts. alone and am 100% certain I would be out cold and unable to drive home. I was so frightened while they explained what it was, that my teeth were chattering! You will have to tell us more about them if you get the chance.

    can I just say that I love dandelions?

    Hugs, gal!

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    1. Denise, (hearingwithelmo)
      the epley wasn’t as bad as I thought it might be. It does sound scary, and when they turned me the way that it causes me to have vertigo it was icky, but that went away soon. (I took meds before hand to help with nausea) but afterward it was so much better. I’m thrilled with the results. I’ve had it return just a tiny bit twice since the first treatment, but my PT showed Stuart how to do it and he has done it those 2 times. It was much easier then because we do it as soon as I feel I’m having any symptoms.

      I’ll try to write up a post about my experience soon. Just wanted you to know.

      I will say, I don’t know if the vertigo attack that happened on my way home had anything to do with it, so I wouldn’t want to be driving. Maybe once someone could be with you? Just in case.

      I’m glad you like dandelions. It was a challenge to take the photos, it’s hard for me to get that low to the ground….yes I fell on my butt a couple of times, luckily I wasn’t far from it. 🙂

      Hugs back at ya honey!!

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  4. Wonderful header, wonderful photograph — yeah you were outdoors, and wonderful news. So glad to read that things are/will be improving. And the serendip of the rep and her husband the doctor. I hope this means the universe is moving in sync with you!

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    1. The universe is fickle. Just taking it one moment at a time. I think I might be going into one of my remission periods, so I’ll feel better for a while. It’s not complete remission, I’m still having wonkiness, but full out vertigo hasn’t been going on.
      I’m glad you like the header and photos. Hehe…I did the header. hehehe I know you know, but I’m happy with it.
      The photos, well it was a challenge. The flowers are just in my front yard, but they are low to the ground. I fell on my butt a few times taking the photos, they could have been better, but as I said, a challenge. 🙂

      My the universe smile on you.
      xoxo

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  5. So great to read this post and read about the direction that things are going for you. Actually reread it a couple of times just to see someone sharing good news and progress. (Though you are very instrumental in creating your opportunities.)

    So happy that you are finding and adding to your team of people who want to help you.

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    1. Thank you sunshine!!
      It is nice to have good things to say. I’m very grateful.
      I owe you an email. Like you, I’ve had a bad cold…the crud didn’t leave any time soon. I’m finally feeling like it has lifted, right in time for allergy season. ha

      smooches darlin’
      to you and G

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      1. G sends bear hugs and St. Bernard kisses. I’m sure they are gentle hugs.

        Wait on the email because I started one to you this p.m. It may take a couple of days because the weather changes are making me spacey. But, the snow is almost gone, been wearing my spring jacket, got my puffer today just for allergy season… can’t wait for spring to start.

        I’m saying ha right along with you.

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  6. Very happy to hear that you went off Topamax when you realized it was causing seizures, and that being off the meds helped. It’s upsetting to realize that meds that are supposed to help us can instead make things worse.
    -Kelly

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  7. THRILLED about the new doctor, and that your current therapies sound like they have a shot at working. I’m glad you talked to a professional about the lousy treatment in your past – and that they were inspired to want to give you a GOOD medical experience.

    My love and prayers for your health trajectory – onward and upward. Thanks for sharing.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    -ADD Coach Training Field founder/ADD Coaching co-founder-
    “It takes a village to transform a world!”

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