1. < Neuropathy

Finally relief from peripheral foot neuropathy! (my story)

Posted by cln1812 @cln1812, Jul 18 8:34am

I have had peripheral foot neuropathy for a few years. At first it was just numbness and minor tingling. Then the tingling was so bad, it was like it hit me down to my very core. In December, I had a psychiatric hospitalization for bipolar mania. At that point, I was taken off a lot of the psychiatric meds I had been taking. I developed severe cramping in my feet following the hospitalization. I saw a neurologist who sent me for bloodwork and did an EMG. He found my iron was a bit low along with folic acid. I started taking iron supplements and folic acid. After the EMG, he diagnosed me with peripheral foot neuropathy and a pinched nerve in my neck and minor carpal tunnel syndrome. He came to the conclusion the neuropathy was idiopathic since I don't drink at all and I wasn't diabetic since my A1C was normal.

At that point he put me on gabapentin. I didn't really notice any difference. He add oxycarbazepine and I STILL didn't notice any difference. The foot cramping was especially bad when I lay in bed trying to fall asleep and made it difficult to sleep. I got discouraged I would ever find anything to help.

I tried a lot of different supplements people mention on this site. Still no improvement.

In late spring, I got severely depressed and the neuropathy was a huge part of it. I mean, I could see how people with neuropathy get so depressed they don't want to live anymore. I was at that point. My psychiatrist put me on Cymbalta 30 mg once daily for the depression. The Cymbalta started to help the depression quickly. After the first week, I started to notice maybe a minor improvement in the foot tingling. After a month to 5 weeks, the tingling was entirely gone. But I still had the cramping and that was just as bad as the tingling.

I recently had a round of mania. At which point my psychiatrist added Lamictal (lamotrigine) 200 mg twice a day to my psychiatric meds. Wow! Within 2 weeks the cramping was entirely gone.

I know the most of the literature out there says Lamictal only possibly helps with neuropathy and my neurologist wouldn't prescribe it for me; I got it from my psychiatrist as Lamictal is commonly used to treat bipolar disorder. Lamictal was incidently one of the medications the hospital had taken me off of in December, and that was exactly when the foot cramping began. My neurologist wouldn't prescribe it because of my mental health issues, but I got the picture he would have if I didn't have bipolar and panic disorder.

If you are at the end of your rope with foot neuropathy and your neurologist will prescripe Lamitical for you, it is worth trying. Better yet, if you go to a psychiatrist, see if he will prescribe it. Don't try it without being monitored by a professional doctor, of course.

I still do have the numbness with the neuropathy, but honestly, that is something I can cope with. The tingling and cramping not so much.

I realize this may not work for everyone, but I just wanted to share my story.

Interested in more discussions like this? Go to the Neuropathy Support Group.

johnnyguitar | @johnnyguitar | Jul 19 2:09pm
In reply to @omega101 "Hello! I am delighted with your post! A miracle in relief! I too posted that my..." + (show)
@omega101

Hello!
I am delighted with your post! A miracle in relief!
I too posted that my neurologist prescribed an old anti-depressant, Nortriptyline 20 mg for nerve pain after taking Gabapentin and Acupuncture (worked for 2 days). I was in constant burning pain in legs and feet since it is believed, after a Covid vaccine booster two years. I have never been the same. All my blood work is normal and I went through EMG's, etc. I started taking Nortriptyline and after only 3 days started with relief. It is six weeks now! I am thrilled!!!
All that said, I am pain free and not depressed. Constant pain is debilitating!!

Perhaps, some anti-depressants could help other folk dealing with same issue. Let's hope the news gets out and in particular, this group of persons who are suffering also. I highly recommend seeing a Neurologist. They are very sophisticated and know current meds/procedures to help. A GP is a generalist. With this issue, a Neurologist!

Best,

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I researched sideffects and not only the number but when I got to Sexual Its a no go for me My doctor added Finasteride for my BPH and my Libido went to Zero and Orgasm completely stopped. Doc will probably yell at me but we have a 52 year marriage and she is like a Rabbit. I still take Tamsulosin for BPH

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johnnyguitar | @johnnyguitar | Jul 19 2:15pm
In reply to @solobeee1 "After reading your story I feel you are now drug dependent when you should also be..." + (show)
@solobeee1

After reading your story I feel you are now drug dependent when you should also be talking about alternatives for your mind like exercise or yoga which works to make you less dependent on drugs. It should certainly be a good alternative to drug dependency.

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I'm thinking of taking a class for Tai Chi the VA offers anyone have any options on trying it. My Balance sucks though

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cln1812 | @cln1812 | Jul 19 2:28pm

It would be so much better if PN had an easy cure-all, something that would work surefire first time around for everyone instead of having to try practically everything out there before maybe, and only if you're lucky, stumbling upon something that works for you.

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joanland | @joanland | Jul 19 2:57pm

Thank you for sharing. My take-away from your comments is that we are each unique and there are many factors that could contribute to various symptoms, and to continue to see physicians in various specialities because one of them may hit on an appropriate treatment. I am so glad you've found some relief. In spite of the complexity of your case, you have found improvement. May it continue.

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solobeee1 | @solobeee1 | Jul 20 8:36am

Let’s not forget LDN~Low Dose Naltrexone that works very well for pain but unfortunately, not for numbness.
See more here:
https://ldnresearchtrust.org/conditions

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1 reply
26sabrina | @26sabrina | Jul 20 11:54am
In reply to @julbpat "I have idiopathic SFN. No numbness, but lots of burning pain in my toes, plus pain..." + (show)
@julbpat

I have idiopathic SFN. No numbness, but lots of burning pain in my toes, plus pain and tenderness pretty much everywhere. Two years ago I switched from pregabalin (Lyrica) to carbamazepine (Tegretol), which I had been on previously for seizures. The relief was immediate. However I immediately started gaining weight - 10 pounds in the first two months, then it continued. I’ll admit I gave up on weight loss and just ate whatever I wanted, once I realized the Tegretol was making weight loss very discouraging.
I switched to lamotrigine (Lamictal) about 2 1/2 months ago. Ouch!!! The burning toes returned within 48 hours of starting to wean off Tergretol. This has been a rough period, with lots of neuropathy pain.
Yesterday I started another drug, oxcarbazepine (Trileptac). It is similar to Tegretol, but hopefully without weight gain. Even at a low starting dose, I felt immediate relief from the burning pain. Yesterday after just two doses of 150mg, I urinated so much that I felt lighter. I was also very sleepy all day, but I can take that short term.

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Yay for you.
I too went through several medications and so many types of external modes to relieve the awful burning in my feet. I saw a new neurologist who started Nortripyline. I started at 10mg daily and progressed to 40mg daily. I am finally able to sleep through the night with no burning. My feet do feel kinda heavy and I do feel little burning at the end of the day.
This has been a game changer for me.
Maybe this medication will help someone else.

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3 replies
thighirritationno1 | @thighirritationno1 | Jul 21 10:15am
In reply to @26sabrina "Yay for you. I too went through several medications and so many types of external modes..." + (show)
@26sabrina

Yay for you.
I too went through several medications and so many types of external modes to relieve the awful burning in my feet. I saw a new neurologist who started Nortripyline. I started at 10mg daily and progressed to 40mg daily. I am finally able to sleep through the night with no burning. My feet do feel kinda heavy and I do feel little burning at the end of the day.
This has been a game changer for me.
Maybe this medication will help someone else.

Jump to this post

Thanks very much for your input..
Very helpful
Never give up

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arkansaslady | @arkansaslady | Jul 21 3:38pm

I would like to ask about the progression of neuropathy. I know everybody is different, but there must also be similiarities or shared experiences we can talk about. I want to know what's next for me in coming months and years. My PN began about three years ago. It started in my left foot and involved brief but intense pain. Only at night. Felt like an ice pick was being jabbed into the bottom of my foot. After about a year, the jabbing pain is still there, but not as frequent. In its place, I now experience a burning pain along the bottom of my foot that shows itself throughout both night and day. I have never felt any of the numbness that some of you experience. Maybe that is coming up next. They say neuropathy can't be cured so what am I looking forward to as the years go by? Is it going to spread to my other limbs? How am I going to manage this disease as I continue to age? If anyone has any thoughts on progression and what it means, please consider sharing. Thanks!

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2 replies
seathink | @seathink | Jul 21 4:22pm

I would also be interested in timelines, as the different neuropathies I have started a couple years ago as a result of a couple different cancer treatments..

Thanks for sharing @cln1812 we all have different journeys and issues but what helps one might help another. I also have bi-polar but so far have only been treated with old-fashioned lithium and some seraquil at night for sleeping. This has been working great for me, but if ever I need to change, or if my foot neuropathy or arm neuropathy changes for the worse, it's great to know I might have this option to try that could maybe help it all.

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omega101 | @omega101 | Jul 22 8:07am
In reply to @26sabrina "Yay for you. I too went through several medications and so many types of external modes..." + (show)
@26sabrina

Yay for you.
I too went through several medications and so many types of external modes to relieve the awful burning in my feet. I saw a new neurologist who started Nortripyline. I started at 10mg daily and progressed to 40mg daily. I am finally able to sleep through the night with no burning. My feet do feel kinda heavy and I do feel little burning at the end of the day.
This has been a game changer for me.
Maybe this medication will help someone else.

Jump to this post

Another Nortriptyline success! I too went thru every 2 years of burning legs and feet due to it is believed, Covid Vaccine injury! Six weeks ago, my neurologist suggested I try Nortriptyline, as it works in many persons, not everyone! It is an old anti-depressant (since 1960's), which was found to help nerve pain. I highly recommend anyone suffering from this debilitating pain to consult a neurologist, not a general practitioner. They are specialists! I take 20 mg. at night and can finally sleep and function during the day! I feel normal again.

I too hope by sharing this, it will help others with their struggle.

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