Idiopathic neuropathy and dizziness.

Posted by judypall @judypall, Mar 10, 2019

I have been diagnosed with idiopathic neuropathy. Came on suddenly 8 months ago. The last 8 months have been many doctors appts to find no cause. I also just do not feel well. Dizzy like.
Head feels heavy and just not right! Not one doctor can answer that. I really feel like there is something going on in my body but no one can figure it out! It’s seems like neurologist came up with the idiopathic name since it can’t be figured out. I am only 53 and have otherwise been very healthy and active, Life has sure changed. Anyone else feel dizzy? Feel generally bad?

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usually neuropathy is NOT associated with dizziness -- dizziness can come from a lot of things: first thing: does the dizziness make it feel like the room is spinning, or just a dizzy feeling in the head -- my suggestion would be that your ear crystals have moved out of the canals where they are supposed to be -- fortunately my doctor picked up on this, and had me visit a vestibular therapist (in the PT department), and after 6 treatments, she got them back where they are supposed to be -- but the symptoms you describe, sound exactly like mine -- hope this information helps

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@lois6524

usually neuropathy is NOT associated with dizziness -- dizziness can come from a lot of things: first thing: does the dizziness make it feel like the room is spinning, or just a dizzy feeling in the head -- my suggestion would be that your ear crystals have moved out of the canals where they are supposed to be -- fortunately my doctor picked up on this, and had me visit a vestibular therapist (in the PT department), and after 6 treatments, she got them back where they are supposed to be -- but the symptoms you describe, sound exactly like mine -- hope this information helps

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The room does not feel it is spinning. It is more like a heavy head feeling. Hard to describe. Did you have any neuropathy too?

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Hello @judypall, welcome to Connect. I have idiopathic small fiber peripheral neuropathy but do not have to take any pain medication because I only have numbness with my PN. Do you take any kind of medication for your neuropathy? Dizziness is one of the side effects of neuropathy pain medications such as gabapentin and others. Have you discussed the symptoms with your doctor?

Gabapentin (Oral Route)
-- https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

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Autonomic Neuropathy/Dysfunction can cause dizziness, judypall.

https://www.ncbi.nlm.nih.gov/books/NBK430888/

Regards, elained

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@judypall

The room does not feel it is spinning. It is more like a heavy head feeling. Hard to describe. Did you have any neuropathy too?

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yes, I have neuropathy (for about 20 years) --- but these symptoms came in the summer with that heavy head feeling -- I would agree with John, f you have not taken any new medications recently, that could be the cause

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@elained

Autonomic Neuropathy/Dysfunction can cause dizziness, judypall.

https://www.ncbi.nlm.nih.gov/books/NBK430888/

Regards, elained

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I do not have autonomic neuropathy. I was tested for that and it was negative. The last test I had was a TST test that showed neuropathy on the tops of my feet, my shins and thighs. The biopsy done at the Cleveland clinic was negative for small fiber. But the tst test at university hospitals said small fiber neuropathy. I can feel everything. Just tingling.

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@johnbishop

Hello @judypall, welcome to Connect. I have idiopathic small fiber peripheral neuropathy but do not have to take any pain medication because I only have numbness with my PN. Do you take any kind of medication for your neuropathy? Dizziness is one of the side effects of neuropathy pain medications such as gabapentin and others. Have you discussed the symptoms with your doctor?

Gabapentin (Oral Route)
-- https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

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I am not taking any medications. Tried lyrica and gabapentin. Did not like the way it made me feel. Worse. Only vitamins

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Has anyone tried red light therapy? Stem cell? There are a lot of chiropractors they claim they can help neuropathy. With therapies NOT covered by insurance.

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@judypall, stem cell therapy is the great hope but there is no joy in what has been hyped to help with neuropathy. It is so important to do your homework and due diligence when researching new treatment options. Stem cells offer a lot of hope. But where these is hope, there is hype and charlatans.
– FDA acts to remove unproven, potentially harmful treatment used in ‘stem cell’ centers targeting vulnerable patients https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm

You can read more about stem cells on the FDA’s website here: https://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htm

There is another discussion on Connect that you may want to read through and connect with other members discussing stem cell therapy.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
-- https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

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I have the idiopathic nuerapathy as well.its affecting both feet with severe pain and some pins and needles feelings. The pins and needles feeling went away after using a cream called Relievz. I Was diagnosed about two years ago with it I’m 53 as well. I wake up
With headaches and feel dizzy some times. Still looking for a cause. I have done tons of blood work all checks out good. MRI and CT scans with nothing coming up except a buldging disk. Not sure when I hurt my back. I’m going to pain Managment tomorrow for an evaluation and possibly get an injection by a spine specialist to help with a small amount of back pain and maybe help with the foot pain as well although the neurologist thinks it may help one foot but not the other I’m running out of options. It’s Frustrating when you can’t figure it out. Good luck

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