Idiopathic neuropathy and dizziness.

Posted by judypall @judypall, Sun, Mar 10 8:19am

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?

Liked by Dee

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

Liked by Lisa Lucier

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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 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 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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@judypall You may want to consider if you have any alignment problems in your cervical spine. Spine problems and injuries can cause vertigo, and muscle spasms can move vertebrae by twisting or tilting them out of alignment, and that can affect blood circulation to the brain. Bow Hunter's Syndrome is an example of that. A physical therapist who treats spine surgery patients might be a good resource. I had these issues because of my spine condition, and surgery for cervical stenosis resolved all of that for me. I did have some episodes of sudden vertigo and my therapist was able to realign my spine and stop the dizziness prior to my spine surgery.

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I am a caregiver for a man who has the same diagnosis. We have been trying to receive help from doctors for 8 years now. We have found that ALL DOCTORS ARE NOT CREATED EQUAL. We have to check out several doctors of the same specialty to find one willing to try to help. We have been to every specialty. We tried spinal cord stimulator trial with no good results. We had treatment by a Chiropractic doctor for 6 months last summer. My friend had lazer treatment, red light, scrambler machine from Germany, special vitamins to mix and drink, and 6 hours a day on machines that help stimulate blood flow and oxygen in his feet, legs and hands. We ate organic food with no sugar or white flour. No relief from his acute pain. I have researched for 8 years and tried anything that sounds reasonable. My friend is light headed. He finds it difficult to stand on a ladder. When he stands from a seated position, he will sometimes fall back. He is light headed. I had the test completed on DNA from 123and me. They give medical information that has been helpful but know that you must spend several weeks understanding and researching what they say because of medical terms. Where both parents give the same gene, I found some leads to check out. He is being treated by a Neurologist now who is exploring B-6 toxicity and has ordered a spinal tap to check a protein imbalance. He will have this done ASAP because the doctor indicated that this can be treated with good results and sometimes causes neuropathy. This is the first doctor who will test for this and offers hope. My research showed that we needed these tests last year but could not get a doctor to test for this.. Some doctors have given up hope of ever having a cure and just want to offer pain medication. Keep searching and find the right doctor. Good luck to you.

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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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Seven months ago I began to feel sweaty and clammy all over my entire body, all the time. Sometimes at night when I am very still I do not feel sweaty and clammy, but it returns as soon as I begin to move around. I have had a stress heart attack and suffered a TBI in a car accident four years ago, along with fractures of neck and back and ribs. I have been dizzy ever since with sometimes experiencing a vasovagil lightheadedness with nausea.
A neurologist recommended an autonomic reflex screen, but a provider here in the Phoenix area refuses to treat people with my Humana Medicare coverage. I would like to get a Mayo apt. Either in AZ or MN where we live six months of the year. How can I go about that? By the way, your post as been the only one in all these months that led to an understanding of what might be going on with me, since nobody else can figure it out after many labs and appointments.

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Hello @lakelifelady, If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. Also,you can find out more about billing and insurance at Mayo Clinic here:
http://mayocl.in/2kk2hF8
Have you been to Mayo Clinic before?

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Thank you John Bishop. Yes, I was an Endocrinology patient a while back at Rochester. I will pursue your links.

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