1. < Neuropathy

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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fishnuts99 | @fishnuts99 | Jan 18 3:00pm
In reply to @stallen "I was in my later 20’s when I started noticing I was adversely affected by motion…I..." + (show)
@stallen

I was in my later 20’s when I started noticing I was adversely affected by motion…I noticed driving got more difficult as there was too much movement between cars, guard rails, trees etc…I also noticed walking even caused the lightheaded, balance issues…it’s gradually gotten worse ( I’m 62 now). I never got an explanation of what was wrong. Then neuropathy started 8 yrs ago which just exacerbates it…unpleasant to deal with.
Similar to you it gets magnified in big stores etc….I think we fall into getting agoraphobia…which isn’t a surprise when you’re uncomfortable with your surroundings because your vestibular system is broken.
And that just throws gas on the fire. You’ve probably noticed pushing shopping carts provides some mental security. Best wishes to you .
Steve

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Steve,

I could have written your letter as well. Shopping cart helps, walking into the big box store gets my dizziness and lightheadedness fired up. Foot neuropathy gotten worse. Almost don't want to drive anymore and I love my cars. I'm lightheaded at all times except when lying down. Getting up and walking makes it worse except for when I get on my treadmill and walk 2.5 miles while holding the hand rails. Walking on uneven ground is all but off limits for me now. I'll be 66 in a few days.

REPLY
1 reply
fishnuts99 | @fishnuts99 | Jan 18 3:04pm
In reply to @stallen "Hi Judy…I stumbled on your post from a few years ago and wondered how you’re doing..." + (show)
@stallen

Hi Judy…I stumbled on your post from a few years ago and wondered how you’re doing now? I have neuropathy and also struggle with a light headedness …and motion causes a feeling almost like being intoxicated. I have autonomic involvement also which I imagine is part of it.
Steve

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Steve,

I have exactly what you have, what has your doctor diagnosed you having?

Carter

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1 reply
blessedsista24 | @blessedsista24 | Jan 18 4:47pm
In reply to @fishnuts99 "Steve, I could have written your letter as well. Shopping cart helps, walking into the big..." + (show)
@fishnuts99

Steve,

I could have written your letter as well. Shopping cart helps, walking into the big box store gets my dizziness and lightheadedness fired up. Foot neuropathy gotten worse. Almost don't want to drive anymore and I love my cars. I'm lightheaded at all times except when lying down. Getting up and walking makes it worse except for when I get on my treadmill and walk 2.5 miles while holding the hand rails. Walking on uneven ground is all but off limits for me now. I'll be 66 in a few days.

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@fishnuts99
Exactly my life for the past 14 months I'm 59
But was told PN and vestibular Hypofunction
Only thing is physical therapy for retrain the brain. But it's life changing.

REPLY
stallen | @stallen | Jan 18 6:22pm
In reply to @fishnuts99 "Steve, I have exactly what you have, what has your doctor diagnosed you having? Carter" + (show)
@fishnuts99

Steve,

I have exactly what you have, what has your doctor diagnosed you having?

Carter

Jump to this post

Hi Carter…the diagnosis is peripheral neuropathy…I also have autonomic involvement. Have you been tested for autonomic neuropathy?
Steve

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1 reply
fishnuts99 | @fishnuts99 | Jan 18 7:03pm
In reply to @stallen "Hi Carter…the diagnosis is peripheral neuropathy…I also have autonomic involvement. Have you been tested for autonomic..." + (show)
@stallen

Hi Carter…the diagnosis is peripheral neuropathy…I also have autonomic involvement. Have you been tested for autonomic neuropathy?
Steve

Jump to this post

Hi Steve,
I'm having some type of nerve test in two weeks on my 3rd neurologist visit. I'm certain I have PN and autonomic involvement. Went from having high blood pressure all my life to low blood pressure, low heart rate, poor sense of smell/taste, horrible constipation, painful foot neuropathy, terrible lightheadedness, inability to tolerate cold or heat very well. This all started about 9 months ago and came on like a freight train. Your comment about going into a big box store is exactly what happens to me. I appreciate your getting back to me 🙂

Carter

REPLY
1 reply
stallen | @stallen | Jan 18 8:22pm
In reply to @fishnuts99 "Hi Steve, I'm having some type of nerve test in two weeks on my 3rd neurologist..." + (show)
@fishnuts99

Hi Steve,
I'm having some type of nerve test in two weeks on my 3rd neurologist visit. I'm certain I have PN and autonomic involvement. Went from having high blood pressure all my life to low blood pressure, low heart rate, poor sense of smell/taste, horrible constipation, painful foot neuropathy, terrible lightheadedness, inability to tolerate cold or heat very well. This all started about 9 months ago and came on like a freight train. Your comment about going into a big box store is exactly what happens to me. I appreciate your getting back to me 🙂

Carter

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I started having symptoms in 2017…My neurologist is in the process of repeating tests ( bloodwork, upper and lower nerve conduction/emg tests & brain /spinal MRI and autonomic test.
This will be about the third time. You probably know this but if not take magnesium glycinate…good for nerves and constipation…and drink a lot of water for the low blood pressure.
I also have had high bp for a long time, diminished taste/smell, lightheadedness…
And fatigue…some due to poor sleep. Ugh…hang in there.
Steve

REPLY
1 reply
fishnuts99 | @fishnuts99 | Jan 19 11:59am
In reply to @stallen "I started having symptoms in 2017…My neurologist is in the process of repeating tests ( bloodwork,..." + (show)
@stallen

I started having symptoms in 2017…My neurologist is in the process of repeating tests ( bloodwork, upper and lower nerve conduction/emg tests & brain /spinal MRI and autonomic test.
This will be about the third time. You probably know this but if not take magnesium glycinate…good for nerves and constipation…and drink a lot of water for the low blood pressure.
I also have had high bp for a long time, diminished taste/smell, lightheadedness…
And fatigue…some due to poor sleep. Ugh…hang in there.
Steve

Jump to this post

Steve,
You answered a question before I asked which was when you first started seeing symptoms. My worry is my lightheadedness seems to just be getting worse as time passes. Has your lightheadedness leveled off and stopped getting worse? Are you still driving your car and doing everyday things like grocery shopping, laundry etc? I did know about staying hydrated and taking magnesium but not heard about magnesium glycinate. I'll start taking that right away, how many mg do you take? Appreciate your knowledge and insight.

Carter

REPLY
2 replies
stallen | @stallen | Jan 19 3:06pm
In reply to @fishnuts99 "Steve, You answered a question before I asked which was when you first started seeing symptoms...." + (show)
@fishnuts99

Steve,
You answered a question before I asked which was when you first started seeing symptoms. My worry is my lightheadedness seems to just be getting worse as time passes. Has your lightheadedness leveled off and stopped getting worse? Are you still driving your car and doing everyday things like grocery shopping, laundry etc? I did know about staying hydrated and taking magnesium but not heard about magnesium glycinate. I'll start taking that right away, how many mg do you take? Appreciate your knowledge and insight.

Carter

Jump to this post

Hi Carter,
My unsteadiness continues to progress I would say. I don’t think it all is the neuropathy as it started in my late 20’s…long before neuropathy…but my sense is the neuropathy has poured gas on it. I dislike going to stores etc but I force myself to do some of it…I’m more comfortable when my wife is with me. Some of this is anxiety about being in a place without being secure in your “ space”. I walk 2-3 miles a day…but it’s getting tougher…I weave a bit😖. I also do some stationary bike…which is much easier than walking. I still drive…but limited distances. I’m in a rural area…I couldn’t handle city driving I don’t think. I’ve noticed I also get some “exercise intolerance “ sometimes…which can happen with neuropathy.
I think Mag Glycinate is supposed to be the easiest to be absorbed. I just follow bottle directions but you may find a higher amount is recommended via the internet.

REPLY
stallen | @stallen | Jan 19 3:12pm
In reply to @fishnuts99 "Steve, You answered a question before I asked which was when you first started seeing symptoms...." + (show)
@fishnuts99

Steve,
You answered a question before I asked which was when you first started seeing symptoms. My worry is my lightheadedness seems to just be getting worse as time passes. Has your lightheadedness leveled off and stopped getting worse? Are you still driving your car and doing everyday things like grocery shopping, laundry etc? I did know about staying hydrated and taking magnesium but not heard about magnesium glycinate. I'll start taking that right away, how many mg do you take? Appreciate your knowledge and insight.

Carter

Jump to this post

Carter,
One other thought…you mentioned you have had high blood pressure for years. I assume you were on 2 or more meds. Now you indicated you have low blood pressure…I assume you’ve reduced your meds via your doctor?
Steve

REPLY
1 reply
pbrowni25 | @pbrowni25 | Jan 19 7:30pm
In reply to @blessedsista24 "Same here" + (show)
@blessedsista24

Same here

Jump to this post

same here.

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