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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Yes, I have same symptoms.
Every day, or even every hour in a day is different.
I've learnt to live with good days and bad days. Can be frustrating.

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Yes, the dizziness is part of neuropathy. I just went through over 3 months of it, incapacitated every morning for hours. I thought I was having seizures. It went away pretty quickly, within a week. During that time I had a brain MRI, and CT scan - $400. Then it faded away, within a week’s time. But I’ve had two recent episodes lately. You might want to read about Dysautonomia, or autonomic neuropathy. You can put together enough symptoms by yourself, without a doctor, to realize if you might have this. I had lots of testing for dizziness, which was all normal of course. So it’s just part of my neuropathy. Now I pay more attention to what is happening preceding the dizzy episode, and try to get lying down quickly to “ head it off”. Lots of fluids, especially in the morning. Big glass of water shortly after waking, etc. Hoping learning more about Dysautonomia will help you gain some control over this.

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@julbpat

Yes, the dizziness is part of neuropathy. I just went through over 3 months of it, incapacitated every morning for hours. I thought I was having seizures. It went away pretty quickly, within a week. During that time I had a brain MRI, and CT scan - $400. Then it faded away, within a week’s time. But I’ve had two recent episodes lately. You might want to read about Dysautonomia, or autonomic neuropathy. You can put together enough symptoms by yourself, without a doctor, to realize if you might have this. I had lots of testing for dizziness, which was all normal of course. So it’s just part of my neuropathy. Now I pay more attention to what is happening preceding the dizzy episode, and try to get lying down quickly to “ head it off”. Lots of fluids, especially in the morning. Big glass of water shortly after waking, etc. Hoping learning more about Dysautonomia will help you gain some control over this.

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Here's what I've tried so far which has been helpful. I remind myself "you are just dizzy from the peripheral neuropathy, you are not having a stroke or heart attack, you are not going to pass out in your chair in this restaurant!" That helps my anxiety - no, I am not going to end up in an emergency room. Then I focus on "grounding." I push my feet into the floor, breathe, drink some water and focus my eyes on something or someone near to me and don't look around a lot until it generally passes. I am a dancer, and I use those strategies - get grounded into the floor, engage my core, find a "spot" to focus on (we do this when we are spinning or turning). It's also kind of like when we were younger and came home after drinking too much and lay in bed with one foot on the floor to ground us and stop the spinning 🙂 Anyone else have some strategies?

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@robindancer5678

Here's what I've tried so far which has been helpful. I remind myself "you are just dizzy from the peripheral neuropathy, you are not having a stroke or heart attack, you are not going to pass out in your chair in this restaurant!" That helps my anxiety - no, I am not going to end up in an emergency room. Then I focus on "grounding." I push my feet into the floor, breathe, drink some water and focus my eyes on something or someone near to me and don't look around a lot until it generally passes. I am a dancer, and I use those strategies - get grounded into the floor, engage my core, find a "spot" to focus on (we do this when we are spinning or turning). It's also kind of like when we were younger and came home after drinking too much and lay in bed with one foot on the floor to ground us and stop the spinning 🙂 Anyone else have some strategies?

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Hi, @robindancer5678

Your advice on grounding reminded me of something I read in Michael J. Fox's memoir, No Time Like the Future: how his Parkinson's coach would tell Fox (and here I'm paraphrasing) when he was about to cross an open space not to focus on the destination but only on where his next footfall had to be placed, and then the next, and then the next, and then … (i.e., one sure step after another and Fox would arrive at his destination). I think of Fox's coach's words every day as I go down the front walk to get the morning newspaper.

Ray (@ray666)

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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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Hello Robin, I'm Charlie I also have unexplained dizziness. And I did go to ENT nothing found there. Sorry no good hell. It's not something that is constantly worrisome. Its a mess throughout the week.
I also have a great deal of balance problems I fell alot last year and sometimes I just don't seem to pay enough attention. Thank goodness for walls in the house and other objects to grab hold of, but now I'm using a cane. I still garden love love my plants my husband helps now so that's good. He's my Gopher!! He gets everything out for me.

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@ray666

Hi, @robindancer5678

Your advice on grounding reminded me of something I read in Michael J. Fox's memoir, No Time Like the Future: how his Parkinson's coach would tell Fox (and here I'm paraphrasing) when he was about to cross an open space not to focus on the destination but only on where his next footfall had to be placed, and then the next, and then the next, and then … (i.e., one sure step after another and Fox would arrive at his destination). I think of Fox's coach's words every day as I go down the front walk to get the morning newspaper.

Ray (@ray666)

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That's what I need to concentrate, grounding. Everytime I get up I stand still until I'm steady. I'm 72 and this is not how I thought my life would be. But I'm like ok and I try to stay alive, busy and cooking. Etc... it all depends on the day.

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@charlie807

That's what I need to concentrate, grounding. Everytime I get up I stand still until I'm steady. I'm 72 and this is not how I thought my life would be. But I'm like ok and I try to stay alive, busy and cooking. Etc... it all depends on the day.

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The other strategy I've been using when I feel suddenly dizzy (with a wave of momentary nausea) is to focus on a fixed object across the room or at a distance. It works when you're seasick, so why not when you're dizzy-sick? Sometimes that helps.

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My diagnosis is idiopathic small fiber peripheral neuropathy, which is generally a purely sensory problem. However, nothing regarding PN is simple, and I believe it is possible to also have autonomic symptoms with this diagnosis, especially as the disease progresses.
I too have dizziness, but I believe it is probably due to orthostatic hypotension, which means one's blood pressure drops when standing up. I have high blood pressure (HBP), for which I am taking 2 medications. My blood pressure is a little difficult to control (which may be due to PN, or not), so sometimes it is a bit too low, which results in the orthostatic hypotension noted above. When dizzy upon standing, I have measured my blood pressure, and found it low.
If you also have PN and HBP with occasional dizziness when standing, I suggest you discuss this with your PCP. It may be possible to help this problem with an adjustment of your HBP meds.
As an aside, there is a difference between dizziness (feeling faint) and vertigo (a sense that your surroundings are spinning around you). This should also be discussed with your PCP to start. No need to see a specialist unless referred.
Hope this helps.

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@jeffrapp

My diagnosis is idiopathic small fiber peripheral neuropathy, which is generally a purely sensory problem. However, nothing regarding PN is simple, and I believe it is possible to also have autonomic symptoms with this diagnosis, especially as the disease progresses.
I too have dizziness, but I believe it is probably due to orthostatic hypotension, which means one's blood pressure drops when standing up. I have high blood pressure (HBP), for which I am taking 2 medications. My blood pressure is a little difficult to control (which may be due to PN, or not), so sometimes it is a bit too low, which results in the orthostatic hypotension noted above. When dizzy upon standing, I have measured my blood pressure, and found it low.
If you also have PN and HBP with occasional dizziness when standing, I suggest you discuss this with your PCP. It may be possible to help this problem with an adjustment of your HBP meds.
As an aside, there is a difference between dizziness (feeling faint) and vertigo (a sense that your surroundings are spinning around you). This should also be discussed with your PCP to start. No need to see a specialist unless referred.
Hope this helps.

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Hello.

A third category I’d like to add is wobbliness on standing and walking but without what I think of dizziness. When I stand (especially after having been seated for a while – 20-30 mins.) and often when I walk (even short distances – ½ city block), it’s as if the lower half of my body is made of rubber bands. I have to be so careful.

However, ever at the wobbliest of these times, my mind is clear (nothing appears to be spinning). To my doctors, I’ve sometimes described the sensation as like being on board a small ship in a mildly rolling sea and trying to walk from place to place without falling.

Ray (@ray666)

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