Living with Neuropathy - Welcome to the group

My name is Jean (straightway22) I have peripheral neuropathy pretty badly. It has moved up from my feet to my hips. I have trouble urinating and going to the bathroom. I have been in Dilantin for 40 years. Does anyone know of a replacement drug fir Dilantin without their awful side effects.

Hello @venki, It must really be frustrating to not be able to get answers and have your doctors not seeming to care about your condition. I see this is your first post in a few years so I would like to welcome you back to Connect and hopefully you will be able to find some answers. I think what might be helpful is to learn what members have shared in this older discussion which has newer entries.

- Cerebral Small Vessel Disease: https://connect.mayoclinic.org/discussion/i-have-vascular-small-vessel-disease-that-so-far-just-has-caused/?commentsorderby=DESC#chv4-comment-stream-header

Mayo Clinic has a list of treatments for small vessel disease that may be helpful
- Small vessel disease - Diagnosis & treatment: https://www.mayoclinic.org/diseases-conditions/small-vessel-disease/diagnosis-treatment/drc-20352123

S. John. I'll see the posts. But the thing is nobody cares about the
difficulties faced by the neurological patients. They prescribe only
Vitamin B tablets & say that we don't have strength in our body. The thing
is I'm also having Varicose veins in left leg which increases the pain.

@artist01
“Stoic?” not hardly.
Although I did have problems excepting my diagnosis in the beginning, I came to the conclusion that “it is what it is.” I needed to move past the seizures and the stigma which was so bad in the ’60s. I think coping with life is much easier than ignoring your fate. I only have one hang up. I suppose I could see a psychologist and try to figure it out. A dear friend of mine was a psychologist and I never thought to ask him. He died in 2009 on his driveway from Convulsive Status Epilepticus. I had a great family and terrific friends who didn't care if I had Epilepsy.
I don't mind the loss of memory or Neuropathy but to this day losing the ability to play the piano like I once did is something I still have problems coping with though I haven't any memory of ever playing it. I went to a parochial school and although I don’t remember I was told according to my family I could play the piano in my junior year in chapel every morning which I was looking forward to but was kicked out of school when I was a sophomore. Couldn't blame them. Hard to learn during seizures and sleeping for hours or days at a time after one. So “it is what it is.” I just wish I could deal with this one issue better. I suppose I really should get rid of the piano.
Take care up in the Artic where you must live,
Jake

@straightway22
I’m curious if you have Epilepsy or some other seizure disorder. I took Dilantin also for quite a while which the doctor say is why I now have neuropathy. I switched to extended release Carbatrol (carbamazepine)
I’m not going to say that it’s any better since all seizure medication have their problems. if you’re looking for a seizure medication without side effects I wouldn’t waste my time. I don’t know of anyone taking seizure medication that doesn’t have some sort of side effects Although they generally seem to improve and some go away after a few months of treatment.
If I was to suggest the safest I would go with
Lamictal (Lamotrigine)
One other thing, although not everybody is susceptible but it’s usually safest to stick with the drug your originally put on meaning if you were put on brand stay on brand if you were put on generic stay on generic I don’t switch back-and-forth. The same holds true for manufacturers always get your medication from the same manufacturer. If I get medication from a different manufacturer I generally have a seizure within two days. changing manufacturers doesn’t phase my brother, although he recently had a seizure, his first one in well over 20 years so who knows why. But I know a great many people that it does affect.
Best of luck to you,
Jake

@leonard and hi everyone. I get emails on posts of subjects interested in and although not part of your conversation I hope you don't mind my comment.
Tears came to my eyes reading about your piano playing and the emotional loss really touched me. Also losing such a dear friend suddenly. I also weight the pros and cons of my ups and downs but I would give all I have, for instance, to spend a day with my family no longer on earth: it's a good thing we do not know what is in the hereafter because if I thought they were waiting fo me to show up I would. I don't know you but IF you ever do find a new home for your piano, perhaps have someone take a photo of you sitting at it, if it's not too upsetting. I love my old photos... I got rid of a lot of odds and ends over the years and sometimes wish I had just taken a picture first, sounds silly, but we are all different in that regard. Am glad you had a great family and terrific friends.... and sorry for your current health issues. J.

Hi @jakedduck1 I am not an expert as a neurologist would be on the subject but I believe there are stages of neuropathy. Our nerves are our sensors for pain so if our nerves don’t work properly, we would experience numbness and not feel pain. My belief is the neuropathy has progressed to a worse stage. Regardless of the stage of neuropathy, exercise can help to keep it from progressing by encouraging neurogenesis Seems like exercise helps with our health in so many ways. Can’t get away from it. A healthy diet included would give our body the proper fuel and nutrition it needs to combat whatever ailment. Kind of giving our body a push start. Sorry, take caution with your five food groups. Nothing wrong with having a treat now and then. No big portions though. Indulging in small amounts is perfectly fine for me. Toni

@jakedduck1. Hi Jake. I can really relate to your sad feeling of loss with regard to your piano skill.

Along those lines, I was a professional artist and am feeling a huge loss right now at not being able to paint anymore. I'm still hopeful I might get back to it, but with the GCA, loss of vision in one eye, two strokes, the neuropathy, all the medications, the fatigue, (do I hear sympathetic violins playing in the background? lol) Well, you understand I'm sure, I just can't get to it. Folks are always after me to start painting again, but I just don't have it in me just yet. You might say my get up and go got up and went! I would love to tell people to stop bugging me about it. (but that wouldn't be very nice.)

I understand your love of your piano. For about three years prior to getting GCA, I was taking Beginner piano lessons with a fantastic teacher who came to my place when I could no longer attend my weekly class at her studio. All my life I had yearned to play piano so at the young age of 80-plus, I had finally made my dream come true. And I could play a mean Old McDonald Had a Farm! But then GCA struck. I know if i want to resume lessons I'd have to start at the beginning again and not sure my "stroke brain" could retain each week's lesson, but again, I hope, maybe, some day.
Anyway, Jake, I have much empathy and sorrow for your loss.
Warmest regards,
Laurie

Ah Laurie.... it's bad enough not being able to do the "general" things such as cooking, keeping in touch with relatives,driving etc., as we age and have illness (I feel so useless)... but for me, who cannot draw a dog or play a piano or sing etc., it must be terribly hard to not be able to continue things like being an artist, pianist, etc.... things people have achieved and are almost "part of them." Has anyone written a short book about being prepared for this new life of illness and in my case, aging? Well I think you are allowed to talk about how sad it is to not be able to do the things you used to but also to discuss the illnesses and health issues you have gone through.... we all know what its like to "just" have a bad cold or break an arm type thing but you have overcome vry serious things and it must have taken all your inner strength to just get through it all... bless you. 💙🌺💙

@avmcbellar
Thank you,
I just read more about the various stages of neuropathy here they are.

Stage One: Numbness and Pain
Stage Two: More Regular Symptoms.
Stage Three: The Pain Reaches Its High Point.
Stage Four: Constant Numbness.
Stage Five: Total Loss of Feeling
No longer any nerves capable of
sending signals to your brain.
Thanks again,
Jake