Living with Neuropathy - Welcome to the group

@artscaping Chris, my friend, I am so thankful for you....Yes, I was ahead of the medical research on several issues that have affected my whole life. Epilepsy is one. I do remind mysellf how blessed I am to live in this world, rather than an earlier century. I would have been in a locked institution as a young child and life would have been terrible and short.

When we moved to Florida, there was one neurologist in Jax., I was 18, 1964. One. Others came. But, this fellow treated me as a cow, ordered me to take the meds and never heard me when I tried to get help from the side effects.. He turned me into a zombie, walking into walls, foggy thinking. He just kept increasing the meds.

I fired him when he came in to see me in hospital. I've had some good docs who did what they knew to do, but there weren't many options through the years. As a female patient, we were expected to be quiet and do what we were told, no complaining. Pretty much the same in my wonderful family- middle child, only girl. So, I learned I had to speak up, in fact that was always my only method of defense!

Now, I urge all of us to be our own advocates. Actually, I don't have anyone to advocate for me, so I learned to speak up, ask questions and expect answers. Usually, gently and courteously. But, there have been some times that approach wasn't right...needed more focus and follow-through. We must be in control of our lives, our bodies.
It truly feels great to have the Mayo folks as advocates.

Bless you, Chris. I'm now using MJ Evolve lotion, and trying a gel that was told may help throughout body and for longer. Used on feet and hands last nite. Ideas? Really need a bit more during the day. CBD tincture dropper helps.
Please let me know about your thumb!!!!!! And, your itch???????? I've lost track and have a real need to know. Be well, stay safe...elizabeth

@jakedduck1 Hello, Jake. Do you know, with evidence, that your neuropathy was caused by long-time use of dilantin/phenobarbital? I think it's a good chance it has caused neuropathy, and perhaps other issues through the years, since I had such an unusual and serious reaction with my liver. I told one of my doctors recently that I'd love to know how these meds and others have affected my body. I think the neurological drugs are surely invoved with damage or weaknesses or diseases I've had/have.

I'm thankful, Jake, that I had something available that helped some, if only a bit and for a short time. I wasn't in that institution as a child!
And, you know, I don't assume I'm safe anywhere......never thought about it and don't like the thought, but it is true. Perhaps because I'm female, I've recongnized my vulnerability.
But, I will not walk the rest of my life in fear. WILL NOT live in fear. Fear is debilitating. Fear causes inaction. Fear freezes you. Fear keeps you from doing what will remove the cause of the fear.

So, I'll do what I know is best for me. I'll improve the quality of my life by working with my Mayo doctors and taking their suggestions, making my decisions, with confidence I've done the best I can in this area. Not afraid. I know and accept the fact I have the junk I have and it is real, but I will not let it rule me with fear or in any other way.

Most importantly, I know I'm safe in my God's arms. He's holding me and protecting me and covering me with His love. I believe all this and, as one who only recently learned to trust, I trust He is with me now. These beliefs are the reasons I have kept going. And, He and Mayo have saved me.

Blessings, and I hope you have a good rest tonight. You are indeed a gem.
elizabeth

Hello, I’m Beth Wiseman and I’m dealing with PN for 3 years. I have no underlying conditions causing this. I’m basically at my wits end. Any recommendations for my symptoms.....nerves tingling in feet, burning in feet and legs.

@ess77 thank you for sharing your story tonight. With as much detail as you shared regarding your epilepsy and seizure history, I did want to remind you that you we do have a group dedicated to that diagnosis that would be great to have you join. I checked and noticed you are not currently following that group so wanted to personally invite you over there to share with members there as well.

-Epilepsy & Seizure Group: https://connect.mayoclinic.org/group/epilepsy-2bb359/

I look forward to you joining, if you are interested!

Hello @bethwiseman and welcome to Mayo Clinic Connect. I am glad that you have found this discussion so you can connect with members who understand. You said you have had PN for three years. What have you been advised to do for care and prescriptions as a starting point to learn a little more about what is and isn't working for you so that other members can provide some additional support to you?

I take Gabapentin 2- 400 mg at night and can take 400 mg during the day (which I usually don’t because it really doesn’t help). I basically take it at night to help sleep. I have never been one to take medicine. My symptoms hurt worse when I sit down or lie down at night. Tennis shoes make my feet sore on top below my ankles. My feet feel very strange at the Metataursal area. I was first told it was metataursalgia and then later told PN.

Thanks, but I should only be on the PN group. I think This was my mistake.

@ess77
Regarding Dilantin Luminal/Phenobarbital as the definitive cause of my Neuropathy no I can't definitively prove it but research seems to show a relationship between some Anti-convulsants.
Dilantin/Phenytoin
Luminal/Phenobarbital
Tegretol/Carbamazepine
Depakote/Sodiun Valporate
Neurontin/Gabapentin
Keppra/Levetiracetam
Vimpat/Lacosamide
Not that it's proof but 4 Neurologists believe it was the probabe cause. I did have three shoulder stabilization surgeries however those doctors were aware of them and didn't believe they could have caused or contributed to my Neuropathy. My understanding is those nerves even if damaged would be limited to the shoulders and arms. But I'm no Physiologist.
Take care,
Jake

@sunnyflower
it sounds like you’re between a rock and a hard place regarding increasing your medication but I wonder if increasing your Gabapentin by 100mg at a time and if you choose to increase it more do it more slowly than usually recommend and by only 100mg at a time. I was wondering if you could have titrated up to quickly and perhaps that's why you're having these side effects. Of course, your other meds may play a part in the side effects too. I knew of a guy who took 7,000mg.
Good luck,
Jake

@bethwiseman, I would like to add my welcome to Connect along with @amandajro and other members. You might want to share your neuropathy story in the following discussion and learn what others have shared helps them.

Member Neuropathy Journey Stories: What's Yours?:
- https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/