Vent about Permanent Neuropathy

Hi All,

Just wanted to ask about others experiences with side effects from Gabapentin 200mg daily. Though this is a small dose, I would get twitching eyes and weird feelings in my head. I really think it helped with the pins and needles and even the back pain from the hormone treatment. I sleep better and It helps with hot flashes. But, I don’t like the side effects, it makes me worry. I have weaned myself off over the last two months and neuropathy is worse than ever. The eyes are better and no weird head sensations. Any advice or suggestions, please!

I weaned myself off of Gabapentin, went from 2700 mg to 900 mg, dropped 300 mg per week. Stayed at 900 because I started having nerve pain again. If you wean too fast, pain will become a problem because of withdrawal. Similarly, what some people call side effects are temporary-- it takes a while for your body to get used to it. That is the reason it is also increased gradually. These are my experiences, yours may be different.

I saw MinusTwo mention a page pack that I was trying acupuncture. I had been doing acupuncture twice a week for a total of 8 treatments and have now dropped down to once a week and eventually will get dropped down to once a month at some point. I did it mainly to help with back pain and sciatica that I have been dealing with for a year and I mentioned to the doctor that I also had neuropathy in my feet so he has been treating that as well the entire time. I also have some neuropathy in one thumb and a portion of a finger but because that is my arm with lymphedema, I did not have that treated. My back has improved considerably over the last few months...not healed but much much better and I even think I might get to a point where I can ride my horse again some day! I still have the neuropathy in my feet but I do not have the sharp pains in them that I would occasionally get and the weird feeling may be a little better. I do take gabapentin as well and have been on that for at least 6 months.

I went from gabapentin to pregabalin because I was taking so much of the gabapentin it made me sleepy, Not so much with the pegabalin (Lyrica). I took it for 16 years and then tapered off last year and added accupunture..Now I am not taking any. I still have some pain, but not like before..it helps me to take a short siesta in the pm.

Kattysmith - I hope you find some relief. Has your oncologist suggested different medications to see if that improves your neuropathy? I find that walking / keeping active helps with my neuropathy pain. I’m taking gabapentin to help manage my pain and ice a couple of times per day.

I recently developed some facial numbness and was diagnosed with facial palsy. Yet another medication added to my long list of medications added tohelp manage side effects from the chemo drugs.

Thanks for the welcome y'all!

Fortunately I don't have too much pain and it's never constant. I do take one Gabapentin at night and ibuprofen most mornings for my crappy knee.

Minus Two, that's great that you can do so much walking and I'm looking forward to building up my leg strength and stamina enough so that I can do some too! My feet are also big blocks of ice and I have to remind myself constantly to pick up my feet.

BTW, I think acupuncture is a great idea; I've had it in the past.

It's good to be able to touch base with others who are going through this strange weird trip we are on!

Katty

Hiking Lady - I'll be interested to see how your new drug regime works. I never stopped taking B-6 and B-12. But I did stop the Alpha Lipoic Acid and the L-Glutamine a year after completing chemo & the year of Herceptin.

hello. new to this site, but am glad there is a neuropathy forum available.

anyway i was diagnosed with peripheral neuropathy about 7 years ago, cause unknown,, but i did have chemo 12 or 13 years earlier for my first breast cancer, may have been due to that, i think, symptoms were in my feet, mostly numbness and tingling, an occasional "electric shock" type pain. but symptoms were pretty stable, not really extending anywhere. 18 months ago i had spine surgery L5-S1 - rods and screws put in to prevent bones from collapsing from the metastatic disease and SBRT L5-S3. after that i think my neuropathy felt like it started spreading. i was having tightness in my feet and around my arch it ,felt like i had a tight sock on. then it was a tight sock up to my ankle. now i feel like i have tight socks on all the way up to my knee. not sure why it started extending so much and so quickly. i'm thinking that maybe my nerves were irritated during the surgery (certainly the nerves controlling that area are the same nerves that are in the area that was operated on.) my neurosurgeon just said "you had neuropathy before the surgery, you have neuropathy now"

anyway that's the history. now i am feeling like i have tightness upper thigh, maybe between my legs. i wake up in the morning and feel like i am lying on wrinkled sheets at the top of my thigh, bottom of butt area (nothing is there, very strange). also sometimes i feel like i have a towel in-between my legs. i know this sounds weird, but that's what's happening.

tomorrow i am going for EMG, cause my neurologist is concerned about what's going on in my upper thigh area. he mentioned Guillan barre and some other disorders??? anyway i'm anxious about what results will be - i know there is something going on. has anyone here ever had symptoms going up the whole leg. (even tight socks up to my knees i think is not usual?) i'm willing to attribute all this to peripheral neuropathy if that's what diagnosis is, i just want a diagnosis.

if anyone has something to add, i'd appreciate hearing it,

ty all, teri

thanks Katty, had emg. it was actually painless. ive had emgs before and they were never painless. anyway doctor told me that the place he learned how to do emg's was called painless emg.

doctor told me that alot of my symptoms are related to the surgery, but nothing to worry about, i will speak with my neurologist to get more exact details, but it was good to hear "nothing to worry about". doesnt mean my symptoms wont get worse, but at least i know there is no serious disease going on, just nerves that were irritated by surgery.

thanks for being there. i'll stay in touch

Just popping in to see if anyone found a magic cure yet. My neuropathy has been very bad the last few months. I must admit I have been very stressed, drinking more than I should as a poor coping mechanism and slacked off on my diet. Also other than a multi and vitamin C I discontinued the other vitamins. Trying to get back on track now. Hopefully that will bring on some relief/improvement?

As a single person I struggle with good nutrition. It seems like so much work in preparation, clean up and much wasteful leftovers so I end up eating a lot of the frozen prepared foods. Tomorrow is shopping day. I will be more conscious of my diet. Also my nutribullet died months and months ago. That enabled me to get at least 5 fruits and veggies a day so that will need be another thing on my list.

There are local neuropathy clinics but sadly treatments are not covered by insurances and I understand costly but perhaps an option for some of you with better financial resources. Worth a try?

hey, hey, hey - NotBroken. GREAT to see you!!! Sorry about the neuropathy. I'm in favor of B-12 and B-6 and magnesium, but I'm pretty good about taking vitamins. I'm finally going to see the neurologist this month. The appointment was cancelled twice last year due to Covid. Looking for some new tips & to see what's coming down the pike. I don't expect much but I'll certainly pass along anything I learn. I'm fortunate not to have much pain, but there are so many things I can't do with numb feet & no balance, and numb fumbling fingers (my son wants me to get a hearing aid but how in the hell could even put in the battery?)

Like NSBrown, I started walking when Covid started. Over a year I worked up to 5 miles most every day. Unfortunately with gyms closed I didn't keep up with balance exercises & muscle building (except my legs of course).

I think of you often!!

Thanks NSBrown. The lady who did my exam before COVID said that non-prescription hearing aids were 'just around the corner' so maybe I should wait. Frankly I need to re-schedule this just like every other doc I'd planned to see since February 2020.

Thanks MCBaker. It's time to make an appointment at Costco for another full exam.

I built up by using hiking poles. I got an inflamed nerve in my left arm/shoulder and doctor told me to stop using them, and I have been doing ok. you would do better going to a gym. They can help people with health concerns just as well as weight-lifters and endurance athletes.

NotBrokenJustBent - I only take 250mg of magnesium oxide with dinner. I’m still having low magnesium issues from chemo and any more than 250mg causes me some GI issues.

I looked at the Cubii online. Similar concept to a recumbent elliptical without the arm workout. Anything to get the blood flowing in our feet is probably good.