Working with Neuropathy?

Posted by pfbacon @pfbacon, Nov 24, 2019

Do any of you still work? I’m 68, I was working until last year. I retired because I hurt too much. Doctors diagnosed neuropathy.

@iceblue

That's an interesting observation – the connection between dyslexia and disorientation, environmental dyslexia.

When I retired we lived 130 miles from anywhere. It was a 3 hour drive each way, so after a long day of shopping and doctor appointment, it was usually well after midnight when we got home. One night, at around 11, I came to the turnoff toward home – and home was 100 miles away. All of a sudden something weird happened to me, and I couldn't go any further. I know now that I was having a panic attack. We had to turn around and get a motel room. (We crossed that motel off our list of places to stay – disgusting.)

I don't think I was disoriented. I just shut down. It was a really strange feeling.

Being suddenly disoriented is disconcerting, even frightening. I'd never heard a name for it – DTD. In the past ten years I've experienced it numerous times and I hate admitting to my wife that I'm having a brain freeze, and not the kind I get from eating ice cream too fast.

Another way I experience brain freeze is when I'm playing the piano at church. I'll forget what key I'm playing in, or I will jump to the wrong verse (I lead the music service on Sunday evenings). A couple of times I had to stop and start over. My major in college was music with a focus on piano, so that kind of thing shouldn't happen. I wonder sometimes if it's because of a medication, but it's not something new. I warn the people about my brain glitches. It's embarrassing. It could fit under the label of dyslexia, I guess.

Jim

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@iceblue

I am in my early 60's and retired last year. My feet have hurt for well over a decade and I had been medicating in ever increasing amounts with T1's. After many failed attempts, I had given up on getting a diagnosis and/or treatment – but I quit smoking in April and piled on 20 pounds. I wanted to get out and do some walking but told my doctor that part of the reason I don't is because my feet hurt so much – and in fact – the pain had begun to wake me up in the middle of the night. He ordered a nerve conduction test – and here we are.

I also have something called Developmental Topographical Disorientation (DTD) – which means I get disoriented VERY easily. Because of that, I have spent the vast majority of my life in a very limited 'space' (mostly at home!) – so my life is not as outgoing as other's. I read, sew, spend time on the computer, and for exercise – do modified forms of yoga and pilates that will accommodate my arthritis.

Up until very recently, 300 mg of Gabapentin had eliminated the pain from my SFN – but a large dose of stress seems to have completely countered that as my foot pain is as bad now as it ever was. I will manage until I see my doctor in 3 weeks and will be asking for an increased amount of Gabapentin…

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Hi, @iceblue – thanks for sharing about the developmental topographical disorientation (DTD). This abstract of a journal article published in Trends in Cognitive Sciences offers more information on this condition and a link to the full journal text, if you're interested https://www.ncbi.nlm.nih.gov/m/pubmed/27450709/#. Sounds like this is a more newly described condition.

@iceblue – DTD would be a great topic of discussion in the Connect Brain & Nervous System group, https://connect.mayoclinic.org/group/brain-and-nerve-diseases/, if you'd consider starting it. I think others may also have this condition and benefit from finding support. Directions for starting a new discussion are found in the Get Started on Connect section at the bottom of every Connect page https://connect.mayoclinic.org/get-started-on-connect/.

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Thank you Lisa ­čÖé I will check out the info on starting a new topic. I just know that for years (decades), I knew something was wrong, but couldn't quite put my finger on what it was. And it does make for a pretty lonely life because you are limited in where you can go…

FYI:
https://www.ncbi.nlm.nih.gov/m/pubmed/20431873/?i=2&from=/27450709/related
* Dr. Iaria, the author of this article is the Researcher at the University of Calgary where I went through my testing. I have not actually met him, but have interacted with him via e-mail.
https://www.ncbi.nlm.nih.gov/m/pubmed/27923326/?i=3&from=/27450709/related
* This is the published study my sister and I were included in. I have also exchanged e-mails with the author (Stacey Barclay)

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@iceblue

So young!!! I hope you are able to work for as long as you want to! You are very wise to be exploring your options and establishing a Plan B.

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Good morning, @iceblue, My memory check tells me you have a medical appointment today. Was this the one with your GP for pain management? Please let us know the results. I will be watching for your post. I hope today is free of suffering for you. Chris

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Thanks for the follow up Chris! I saw my doctor on Friday, and he has given me a 3 month prescription of Gabapentin that indicates I can take up to 600 mg/day. I have been taking 400 mg/day for the past week, and will stay on that for at least one more week before considering an increase in my dosage. My feet are still very painful, but I have noticed that the pain in my hands, arms, and calves has settled down. I am supplementing with T1's a couple of times a day, and although I'm disappointed to be taking those again, it will only be until I land on the right dosage of Gabapentin….

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