PN and Tamsulosin (Flomax)

Posted by Ray Kemble @ray666, Nov 16, 2023

Hello!

Because I've complained of not fully emptying my bladder, my PCP has just given me a script for tamsulosin (Flomax). She and I have discussed my concerns about adding this new medication, especially a medication that lists dizziness among its possible side effects.

Neurologically speaking, I have idiopathic large fiber PN. My chief symptoms are poor balance and a wobbly gait. Fortunately, I've no pain. The only medication I've been advised to try––although it requires a doctor's script, it is categorized as "medicinal food"––is EB-N5. I've been taking EB-N5 for more than 140 days with no ill effects. (I do periodic labs to monitor my B vitamin levels, especially my B-6.) Positive effect of the EB-N5? Other than reporting that my symptoms have remained stable, that's hard to say.

Back to the topic at hand: This morning, I took my first 0.4 mg dose of tamsulosin. I'll take another each morning ½-hour after breakfast, letting my PCP know if I experience any adverse side effects. I thought I'd post this topic here, wondering if any of you have used––or are currently using––tamsulosin along with managing your PN.

Wishing you all well!
Ray (@ray666)

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hi Ray @ray666, I’ve been taking tamsulosin for over 10 years now and have had no adverse side effects. I took 2 .4mg capsules in the morning for a few years until I had a pharmacist give me the normal spiel when I was getting an RX refill. He told me I should be taking it in the evening. I started doing that and it seems to work better. Although that does seem to be contrary to what the “experts” say.
https://www.nhs.uk/medicines/tamsulosin/how-and-when-to-take-tamsulosin/

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Hi, John (@johnbishop) That's great news! Thanks for replying so quickly. I'm sure you can imagine why I was being super-cautious. The last thing I needed was dizziness on top of my wobbliness. 😀 But if you've been using tamsulosin for over 10 years … !!! Thanks, too, for telling me you've gotten better results taking it in the evening. I'll do that, too. I'll take tomorrow's dose after supper. I hope all is well in your world. Here in Denver, we're having warmish weather, odd for the second half of November. I'd have already shoveled my way through a half dozen 6' snowbanks by this time of year when I first settled in Colorado. How things change! –Ray (@ray666)

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I read both of your comments, I have small cell Neurothpy. It also gives me wobbly gait, and I shake in my buttocks. It’s very painful. And I’m allergic to anything that is a painkiller. Never heard of this medication, but I am on vitamins, B12, and B6, an alpha Olympic acids. Perhaps you could let me know, if this qualifies for a small cell neuropathy pain. It was a pleasure reading both of your comments. Thank you.

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Hi, chapanddrew8 (@chapanddrew8)

I'll defer on your question as to whether your symptoms indicate small-cell neuropathy. Mine is large-fiber. If I had to guess, I'd guess your symptoms do, but I am still a neophyte when it comes to this PN business (I was diagnosed only 15 months ago). I'm still browsing the many sites––the credible ones!––learning as I go. If you've not been there, I'd suggest, for starters, you visit the main site for the Foundation for Peripheral Neuropathy and also the Foundation's YouTube page, where you'll find a host of informative webinars, many dealing with small-fiber PN.

Best wishes as you continue to work on your PN!
Ray (@ray666)

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@chapanddrew8

I read both of your comments, I have small cell Neurothpy. It also gives me wobbly gait, and I shake in my buttocks. It’s very painful. And I’m allergic to anything that is a painkiller. Never heard of this medication, but I am on vitamins, B12, and B6, an alpha Olympic acids. Perhaps you could let me know, if this qualifies for a small cell neuropathy pain. It was a pleasure reading both of your comments. Thank you.

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Hi @chapanddrew8, I'd like to add my welcome to Connect along with @ray666 and others. I have idiopathic small fiber peripheral neuropathy but only have the numbness along with a few other ailments including and enlarged prostrate which is why I take the generic form of Flomax which is tamsulosin. Here's more information on the medication.

"Flomax (tamsulosin) belongs to in a class of medications called alpha blockers. It works by relaxing the muscles in the prostate and bladder so that urine can flow easily."
--- Flomax Uses, Dosage, Side Effects & Warnings - Drugs.com: https://www.drugs.com/flomax.html

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Thank you John so you don’t really take this for the small cell, you’re taking it for the other condition you’re unfortunately dealing with. Am I correct in saying that. Thank you for your quick response. I totally appreciate it. Eye 2 Eye have numbness, but I have wobbly ankles and mushy under my feet. I’ve been doing this now since 2017. Thank you again.

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@ray666

Hi, chapanddrew8 (@chapanddrew8)

I'll defer on your question as to whether your symptoms indicate small-cell neuropathy. Mine is large-fiber. If I had to guess, I'd guess your symptoms do, but I am still a neophyte when it comes to this PN business (I was diagnosed only 15 months ago). I'm still browsing the many sites––the credible ones!––learning as I go. If you've not been there, I'd suggest, for starters, you visit the main site for the Foundation for Peripheral Neuropathy and also the Foundation's YouTube page, where you'll find a host of informative webinars, many dealing with small-fiber PN.

Best wishes as you continue to work on your PN!
Ray (@ray666)

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Thank you Ray, I have been on the U2 and following this with scientist, for possibly almost 2 years now. I only have one parathyroid, which is kind of like auto immune, but they’ve not actually said it’s the culprit causing small cell Neurothpy.

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@chapanddrew8

Thank you John so you don’t really take this for the small cell, you’re taking it for the other condition you’re unfortunately dealing with. Am I correct in saying that. Thank you for your quick response. I totally appreciate it. Eye 2 Eye have numbness, but I have wobbly ankles and mushy under my feet. I’ve been doing this now since 2017. Thank you again.

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Correct, I’m taking the tamsulosin for my enlarged prostrate and not for neuropathy symptoms.

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@chapanddrew8

Thank you Ray, I have been on the U2 and following this with scientist, for possibly almost 2 years now. I only have one parathyroid, which is kind of like auto immune, but they’ve not actually said it’s the culprit causing small cell Neurothpy.

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@chapanddrew8, if you've been studying this for going on two years, you're ahead of me. I remember when I was first diagnosed, I wanted to know two things: No.1: What's it called? and No. 2: What caused it?

It has taken 15 months to arrive at what I consider a satisfactory answer to No. 1: It's called idiopathic large fiber (sensory-motor) peripheral neuropathy. I'm happy with that answer. ("Happy" is perhaps not the right word.)

As far as No. 2 goes: I've pretty much given up trying to find an answer. I'm sure there is one (a cause), but I'm at that point where I don't want to spend a great deal of time looking for the answer. I figure idiopathic means idiopathic. I'd rather spend my time doing all I can to maintain max flexibility and build leg strength.

I say that not out of despair or frustration but instead out of plain ol' practicality. Now, if someone were to come along to tell me the cause of my PN, I'd give him a big hug. But right after the hug, I'd go back to working on flexibility and strength.

Life gets very straightforward, thanks to PN––straightforward and complicated, all at the same time. 😀

I wish you the very best!!!
Ray (@ray666)

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The same for you wishing you the best. When they took the test, did the doctor say you have large cell Neurothpy. I am not a doctor, but large do usually means diabetic or some of the family of that. Perhaps I’m wrong, but I’ve been tested for that at least six times and it always came out negative. That’s when they did the biopsy and found out I had a small cell fiber neuropathy. Which is not diabetes. Thank you for your response. God bless.

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