Living with Neuropathy - Welcome to the group

Hello @johnmcmillan, welcome to Connect. I have no medical training or background but I would recommend discussing tapering off of gabapentin with your doctor. You could end up with some pretty severe side effects. Here is some information that may be helpful.

Gabapentin Withdrawal
-- https://www.recovery.org/topics/gabapentin/

John

Thank you.

I appreciate all the information and experience they are willing to share. Thank you, Peggy

Hi, since I have been dizzy since July 8th, at first, then Feelings turned to tingling and numbness through.out My whole body. My body feels like it is going to sleep. my dr said “ I have mild sensory poly neuropathy” she seemed to think that what I am feeling is really minor. However, it doesn’t feel minor to me. The neurologist sent me to Balance clinic. The first appointment she said my inner ear balance part does not work at all and my eyes are trying to compensate my balance. I couldn’t tell if she was bending my toes up or down I could only tell she was holding them. She said I was a severe fall risk. Today I went for my second appointment at Balance Clinic
For 1 1/2 hour I did some simple movements standing and. Moving my toes. Immediately after, , I felt like I needed to sleep,weak all over, my upper lip started feeling numb again and I was feeling numb all over, like my body was going to go to sleep, , but the extreme feeling of tiredness was something more than I had ever experienced before. No pain,thankfully. It is now about 5 hours later, I have been resting, couldn’t sleep , and I still feel the same way. Is this polyneuropathy.? Does it ever go away? I am really thankful I don’t have pain, i it this exhaustion is really something. For a little bit this weekend, I was hoping that all of this was just anxiety brought on by my son who was sent over seas in July, and thankfully he returned this weekend. But No such luck , these strange body feelings still remain.

I've been told that my nervous system is dying, that there is nothing to reverse it, I have accepted it, even though it's 'not fair'. I just retired a few months ago and was planning to go to France to look up the little town that my father's family came from (Vance). Instead, I'm getting my affairs in order. There is relief in this too -- at least I won't live so long that I run out of money. In this group, I have read posts from people who have been struggling with neuropathy for years - years! Mine is advancing so rapidly that I'm soon going run out of medicine. The politicians in the state I live in have declared that our medicines are 'controlled substances' and they are making it harder and harder for us to get it -- they have even empowered pharmacy clerks to withhold our medicine from us if there is anything 'suspicious' (?) about it. Peggy

Hi Peggy @pfbacon, I listened to an 80+ year old neurologist at a meeting a few years ago for the Minnesota Neuropathy Association and one of the things I found interesting was a statement he made - everyone gets neuropathy sooner or later if they live long enough. Some of us just happened to get it sooner and we learn to live with it. I was told the same thing when I was first diagnosed with idiopathic small fiber peripheral neuropathy - nothing we can do, just let us know when it gets worse. That's basically why I did some searching and found some over the counter supplements that help some with the numbness. They definitely do not cure the PN but they do seem to have slowed or stopped the progress so I'm good with that. I only have numbness so I don't have to deal with the pain that most others with neuropathy like yourself. Others in the closed Facebook group I belong to have found relief from pain and have been able to taper off of medications and only use the supplements. I don't know if it will work for you but if you don't have access to what has been helping you it might be worth trying. They have a website that provides the link to their Facebook group - http://solutions2pnpd.com/.

I may have shared my story with you earlier but if not here is a link to the post:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Wishing you peace and strength in your journey with neuropathy.

John

Hello John,

Many thanks for your message. I will look into the possibility of taking supplements as suggested by your good self. I have an appointment at the end of November with my neurologist here in London so will let you know how I get on. I was also wondering if you have ever heard medical cannabis helping with neuropathic symptoms. Cannabis for medicinal purposes has just been made legal here in the UK but I am not sure if it will be prescribed for neuropathy - no doubt it will have to go through clinical trials before it gets approval for certain disorders. Thank again for your help and support. Regards Danielle

Hi Danielle @daniellef, since I don't have any pain associated with my neuropathy I have never thought about seeking help through using medical cannabis. I think it can help reduce pain symptoms but I have no personal experience and no medical background or training. I did see an interesting video on Mayo Clinic's Medical Professionals hub with Michael Bostwick, M.D., Mayo psychiatrist, called "Blurred Boundaries: The Therapeutics & Politics of Medicinal Marijuana." that may give you some insight.

Link to the video by Dr. Bostwick:
— http://medprofvideos.mayoclinic.org/videos/blurred-boundaries-the-therapeutics-and-politics-of-medicinal-marijuana

John

i think that medical cannabis is worth a try. I tried it because I had read Of success for some. I was on it for three months and gastric side effects kicked in before any pain relief. In the state where I live you must be certified by a physician and then you are under the supervision of an experienced pharmacist. I was using three forms of the cannabis , starting with very low doses and gradually increasing. The program here requires close monitoring and i received that.

Hello @fonda . May i lnow if the drug helped you in the End and have seen Any improvement ? Thank you !