Got to admit it’s getting better…

Much better today, still have a residual ache in my shoulder, the neck knot has improved considerably. Shoulder is tingling and there are occasional pins and needles around my shoulder blade. A lot of the arm pain has abated. Much more strength in my hands.

I’m getting a lot of problems with my ears again. Flaring blaring tinnitus, and lots of dizziness and occasional out and out rotational vertigo. Cinnarizine is still one my favourite happy pills, always feel happy when it conks the nausea on the nose.

I’ve heard of yet more people with the dread combo of HNPP and vestibular and or auditory problems. And yet again most people are being told by their neurologists that they aren’t related (HNPP and inner ear). The problem I have with that is that HNPP is quite rare, most general neurologists don’t see more than a few people with HNPP in their whole career, if they don’t bother to really search the medical literature they will form the opinion that HNPP doesn’t affect hearing or vestibular balance. They will probably never come across that combo again. Without a study into this association many more people are going to told the same thing.

In some ways I think the geneticists are really the key people who should be collating this info. They are far more likely to see more HNPP patients in their career span. And should be able to see and assess whether or not there really is a link between HNPP and Hearing loss/vestibular disease, and even other cranial nerve disorders.


3 thoughts on “Got to admit it’s getting better…

  1. Jon I have shocking Tinnitus, and it became apparent at about the same time my nurological symptoms became disabling and obvious. I think sot doctors don’t know and don’t care. As i type my right little finger is spasming and curling up into the palm. Thats not happend for a long time, a year or more.

  2. I’ve heard it said that Tinnitus is the ear equivalent of phantom pain. The brain doesn’t get the input so it turns up the volume. I’ve had it for 31 years now, sometimes it bugs the life out of me, other times it just whistles away merrily.
    I don’t think there’s any treatments that work, except for the ‘learn to live with it treatment’… where have we heard that before!
    Do you use wrist braces at all?

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