Living with Neuropathy - Welcome to the group

@penn, You reminded me of a time when it seemed like every night, I had a body jolt in my hip area that almost lifted me out of bed. It wasn’t painful, but just one weird spasm as my body was getting near sleep. It went on for at least a year and I couldn’t figure it out. I also have no idea how it stopped, because until reading your post, I didn’t realize it no longer happens! I hope yours resolved soon!

I have had periods where I had random twitching when I tried to take a nap in the daytime. As I relaxed, it would suddenly stop. This same twitching would also occur when I was sitting, using my hands, etc but not as strong. It was very strong for a while, but has diminished with time. Who knows why? I’m sure it will be replaced by some other weird thing!

I'm puzzling over a double whammy. I’m posting not because I’m looking for a snap solution, but only on the chance that another of you out there may have faced the same dilemma.

I have idiopathic PN––no pain (thank goodness!) but balance difficulties, especially in low light and unfamiliar surroundings. That’s Whammy No. 1.

Whammy No. 2 is a nagging bladder: every 20 or 25 minutes it seems I have to “go” again. (I’ve tried Flomax but it hasn’t helped.) What’s the dilemma, you’re wondering? My partner and I have always enjoyed going to the theater: movies, plays, and concerts. We haven’t been to the theater since the onset of my PN. An auditorium environment can be a challenging place: low light, unfamiliar surroundings, and––thanks to a nagging bladder––a need to hop up (darn near impossible for a guy with PN) and go to the restroom.

I realize this is not The Crisis of All Crises, but my partner suggested I ask on Connect; “You never can tell,” she said. “Someone may have already found an answer to this ‘Living with PN’ question.” (I'm smiling even as I ask the question.:-) )

Ray (@ray666)

I'm puzzling over a double whammy. I’m posting not because I’m looking for a snap solution, but only on the chance that another of you out there may have faced the same dilemma.

I have idiopathic PN––no pain (thank goodness!) but balance difficulties, especially in low light and unfamiliar surroundings. That’s Whammy No. 1.

Whammy No. 2 is a nagging bladder: every 20 or 25 minutes it seems I have to “go” again. (I’ve tried Flomax but it hasn’t helped.) What’s the dilemma, you’re wondering? My partner and I have always enjoyed going to the theater: movies, plays, and concerts. We haven’t been to the theater since the onset of my PN. An auditorium environment can be a challenging place: low light, unfamiliar surroundings, and––thanks to a nagging bladder––a need to hop up (darn near impossible for a guy with PN) and go to the restroom.

I realize this is not The Crisis of All Crises, but my partner suggested I ask on Connect; “You never can tell,” she said. “Someone may have already found an answer to this ‘Living with PN’ question.” (I'm smiling even as I ask the question.:-) )

Ray (@ray666)

I'm puzzling over a double whammy. I’m posting not because I’m looking for a snap solution, but only on the chance that another of you out there may have faced the same dilemma.

I have idiopathic PN––no pain (thank goodness!) but balance difficulties, especially in low light and unfamiliar surroundings. That’s Whammy No. 1.

Whammy No. 2 is a nagging bladder: every 20 or 25 minutes it seems I have to “go” again. (I’ve tried Flomax but it hasn’t helped.) What’s the dilemma, you’re wondering? My partner and I have always enjoyed going to the theater: movies, plays, and concerts. We haven’t been to the theater since the onset of my PN. An auditorium environment can be a challenging place: low light, unfamiliar surroundings, and––thanks to a nagging bladder––a need to hop up (darn near impossible for a guy with PN) and go to the restroom.

I realize this is not The Crisis of All Crises, but my partner suggested I ask on Connect; “You never can tell,” she said. “Someone may have already found an answer to this ‘Living with PN’ question.” (I'm smiling even as I ask the question.:-) )

Ray (@ray666)

Oh my brother from another mother Ray @ray666. It definitely is a double whammy for me also. Not sure I have any real answers for you but I can tell you how I sort of cope with it. The only time I use a walker is on my trips to the bathroom at night because my balance is not great and it's darkish. The walker is not practical for me outside the home since it would be more of a nuisance and slow me down. I don't go out late in the evening much but when I do I have the senior shuffle down pat. I don't walk very fast on purpose and I'm always looking where I'm stepping.

I do have to deal with the nagging bladder issue when we go out anywhere. What has helped me is to try and use the bathroom before we go out, then not drink any liquids or limit them when we are out unless I have easy access to a bathroom.

I also use tamsulosin (flomax) daily and take it at night vs in the morning with my other meds. This was a tip I got from my pharmacist after years of taking it in the morning. At my annual wellness appointment earlier this week I discussed the issue of trouble emptying the bladder with my new PCP and she mentioned trying another medication that works differently if I wanted to try it. I think it was finasteride but she mentioned some side effects that I wasn't keen about - takes up to six months before it starts helping and can also cause sexual dysfunction. I was thinking more of the minimal invasive surgery so I may have a consult with urology this summer just not sure if I want to do it or just live with it.

Right now I'm just trying to stay warm and happy most of the snow missed us. I think we may have 3 to 4 inches of the white stuff by morning and my wife should be able to get out of the driveway to get to work at 5 am so I can wait until it's light out before I break out the snowblower and clear the driveway. It's 7 degrees now but the high for the next 3 days is 10 degrees Saturday, minus 8 Sunday and Monday for a high and minus 10 or lower at night for the next 3 days. Hoping it's warmer where you are.

@ray666 - I had my annual eye doctor appointment this week. I mentioned how I’ve just come to notice this past winter that it’s more challenging for walking and balance to be outside in the dark, which I find I am more in our new home community. Nighttime walking to the bathroom has the same challenge but it’s so few steps that it is not as concerning. I told her I avoid driving at night because with my PN, I think it’s safer for me to be able to have a little visibility of my feet, but that when I do drive in the dark, I still feel my vision is off a little, despite having had cataract surgery.
Her answer surprised me. I had my cataract surgery 1 year after I came down with my severe PN. The surgery implanted lens for “mono-vision”. Before the surgery, I wore glasses (or contact lenses when I had good fingers/hands before PN) for a few years that had me seeing mono-vision. (For those who may not know, mono-vision is where one eye is set to see/read close up, the other for far away, and your brain adjusts so both eyes work together for complete vision)
She explained that it’s extremely common for people with mono-vision to have a harder time adjusting to night vision, as darkness makes it harder for the eyes to adjust to the distance part of the vision, which can be just a few feet. She said they have glasses that help folks with mono-vision adjust to being in the dark better, but without glasses, to try not to look too far away while walking at night when I do.
In hindsight (no pun intended), I believe my nights were a little more challenging at night vs day for the 3 years I had contacts/glasses corrected to mono vision before I ever got PN, so I believe this Ophthalmologist when she says I might be wrong (in my case) for blaming my night time balance woes on PN when the mono-vision dilemma occurs in folks without PN as well. (So maybe a double-whammy for me)

Hi Ray, I take Gabapentin for bladder urgency, which may be different from your situation. W/o it I wouldn't make it to the bathroom in time. It is very expensive, but w/ appeal from my urologist the price drops to about 1/5 after insurance has paid.
I also have implanted a nerve stimulator which increases my bladder control. With both the Gabapentin and the E-stim device life is almost normal. I can certainly enjoy a concert, an opera, or a play
Wishing you the very best. Hope you have a good urologist to work with.
2° in Central Oregon at 10 AM.

Hi Ray, I take Gabapentin for bladder urgency, which may be different from your situation. W/o it I wouldn't make it to the bathroom in time. It is very expensive, but w/ appeal from my urologist the price drops to about 1/5 after insurance has paid.
I also have implanted a nerve stimulator which increases my bladder control. With both the Gabapentin and the E-stim device life is almost normal. I can certainly enjoy a concert, an opera, or a play
Wishing you the very best. Hope you have a good urologist to work with.
2° in Central Oregon at 10 AM.

Hellooooo, John! (@johnbishop)

It's cold here too. I think it's cold everywhere. I went out first thing this morning to fill my gas tank, and it was -5º. When I was heading home, my Jeep's dash told me it had risen to -3º. I thought, "Phew! It's really warming up. Time to set out the patio furniture." 🙂

I haven't acquired a walker yet, but I can see one in my future––maybe my near future. Most hours of the day, I get around just fine, a little shaky, of course (at certain hours more so than others), but my balance practice has so far prevented me from falling. Of course, I don't want a bad fall to be an overdue message: "Hey, Ray, how about that walker?"

Although my partner and I have skipped going to movies and plays (those darkened auditoriums) when we have a friend's invite for dinner, I do much as you do: stop drinking any liquids a few hours before we're expected at the friend's, then ration drinking any liquids while we're there. That helps, but we've made a practice of keeping our social get-togethers short.

Along those lines, a movie over three hours, like Oppenheimer and Killers of the Flower Moon, presents a real challenge. Wagner operas are definitely out, too. 🙂

I plan to give tamsulosin another try. I was too quick to blame what I thought was a new side effect on the tamsulosin. What I thought was possibly a medication side effect may have been nothing more than my PN acting up. I, too, would rather avoid surgery, minimally invasive or not; a friend had the surgery you may be thinking of, and although the results were good, he was uncomfortable for about 7-10 days (i.e., a catheter). Today, he's happy he did what he did. I envy him, but I think I will try tamsulosin first.

I see it's now -1º. Downright tropical. 🙂

Ray