Intermittent dizziness?

Posted by robindancer5678 @robindancer5678, Sep 16, 2023

My diagnosis was in February 2023 and I still have lots of questions. There are some days and a week at a time where I am doing great and think I am on the mend. Then I have what appears to be a flareup? Is this normal? It’s almost as though somebody flipped a switch. Suddenly this week, I am dizzy and think I’m going to fall over, I have fluttering in my chest, get short of breath when walking. But no weakness and no numbness. Generally feel lousy. But the next week I could be fine. Is this normal? Particularly the dizziness.

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U are doing better than I am. My dizziness never goes away. Plus, I have a headache with it every single day for 4 years/all. Neurologists can't figure it out. Are old people supposed to be dizzy? I'm healthy otherwise at 76. WTH?

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Good morning, robindancer5678 (@robindancer5678)

And welcome to the forum. You pose an interesting question. It’s one I’m going to defer to others while looking forward to reading what they have to say. The reason I’ll defer is I’ve rarely experienced dizziness. However, when I began complaining to my doctors about poor balance and having an increasingly difficult time walking, my doctors almost seemed to insist I had dizziness. It was a challenge to get them to believe that my wobbliness was all from my waist down and that my head was clear throughout. Mine is idiopathic sensory-motor PN. To date, my only symptom/s is poor balance (and difficulty walking). That’s why I find your question so interesting. I’m wondering: What if I’d had dizziness? What sort of PN might I have? I look forward to reading what others have to say.

Ray (@ray666)

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@mikaylar

U are doing better than I am. My dizziness never goes away. Plus, I have a headache with it every single day for 4 years/all. Neurologists can't figure it out. Are old people supposed to be dizzy? I'm healthy otherwise at 76. WTH?

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So incredibly frustrating, isn't it? 76 is young! I'm 67 which I think of as young and have been very physically active. I don't want to accept this "new normal."

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That's one of the toughest things about a PN diagnosis, at least it was for me, this business of "settling for a new normal." I resisted that with a fury. I once prided myself on being a long-distance runner. I can set that aside – or had to – years before I got my PN diagnosis when my ortho doc pointed out bone-on-bone in my left knee. ("Bone-on-bone" – those dreaded words!) A total knee replacement scotched my running. But PN killed my stage career. I'd been noticing an increasing wobbliness when I was on stage, but for the longest time I was able to set it aside and play through – until just a few years ago: I was in what would turn out to be my last play when my unsteadiness got so bad I realized I was paying little attention to what I doing (supposedly entertaining a paying audience) and almost all of my attention on not falling on my a**. That's when I quit. So is this my new normal? I guess it is. Fortunately, I've compensations – which enable me to say I'm still a happy guy. Do I miss the running and the performing? You betcha! But life goes on and I intend to keep up with it. All this is to say I know how you feel. I wish you success in finding a few compensations. They're there. Finding them can be tough, but they're there. Cheers! –Ray (@ray666)

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Dizziness and confusion very disorganized?

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Have you seen an ENT? When it was thought my unsteadiness was inner ear, I was sent to see an ENT. When it turned out it wasn't, that's when I saw my first neurologist. However, it was still a year and a half before I got my PN diagnosis. All of this takes such time. It's too bad it does.

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Thanks Ray. I may indeed go see an ENT. Every time I have a new symptom I go to a new specialist in hopes that it is not my SFN. So far I have a neurologist, neurosurgeon, gastroenterologist, pulmonologist, cardiologist, endocrinologist and next week it’s off to see an allergist. Some of the symptoms no one has been able to explain. So frustrating.

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@leer67

Dizziness and confusion very disorganized?

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I’m sorry, I don’t understand. Can you clarify your comment? Thanks.

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@robindancer5678

Thanks Ray. I may indeed go see an ENT. Every time I have a new symptom I go to a new specialist in hopes that it is not my SFN. So far I have a neurologist, neurosurgeon, gastroenterologist, pulmonologist, cardiologist, endocrinologist and next week it’s off to see an allergist. Some of the symptoms no one has been able to explain. So frustrating.

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We do all seem to become collectors of medical specialists as we pursue our diagnoses. I too have amassed a pretty good ly collection: a couple of neurologists, a neurosurgeon, a hematologist, a dermatologist, two orthopedists, an ENT, and of course, my PCP. The other day I thought I was about to collect another specialist, one I'd never heard of. My PCP noticed a spot under my right toenail and suggested I see my dermatologist. I called my dermatologist's office and was informed by the front desk, "Oh, I'm sorry, but we don't look under toenails anymore." !!!???!!! I thought, What's this? Is there now such a thing as a toeologist? Is that who I have to go see? (Crazy business, eh?) –Ray (@ray666)

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