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.

John, Volunteer Mentor | @johnbishop | Jul 18 8:50am

@cln1812, It's great to hear you finally have found some relief from your neuropathy pain. Thanks for sharing your experience!

omega101 | @omega101 | Jul 18 8:55am

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,

cln1812 | @cln1812 | Jul 18 10:43am

@omega101
I am so happy to hear you have found relief from your neuropathy. It is so easy to get hopeless and I think even depressed from neuropathy even without any prior mental health issues. How long did you suffer from neuropathy before finding relief?

cln1812 | @cln1812 | Jul 18 11:45am

@omega101
To be honest, I dealt with numb toes for awhile, IDK 4-5 years. The tingling started maybe a year ago and got really bad last November at which point I started really vigorously pursuing solutions and going to the neurologist (before that it was just the PCP who was like take sublingual B-12, it'll help with the numbness, but of course it didn't). The cramping started when I was taken off several of my old psychiatric meds, including lamotrigine. That's also when the tingling got so bad, down to my very core and also into my forearms.

Like I said I still have the numbness, but it is a LOT less to deal with than the tingling and cramping. At least, it is less for me.

omega101 | @omega101 | Jul 18 12:15pm

I am happy you have some relief. Hopefully, our conversation with help others.
Best

omega101 | @omega101 | Jul 18 12:16pm

In reply to @omega101 "I am happy you have some relief. Hopefully, our conversation with help others. Best" + (show)

P.S. I dealt with burning pain for two years. I had very little numbness.

julbpat | @julbpat | Jul 19 7:45am

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.

solobeee1 | @solobeee1 | Jul 19 10:48am

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.

cln1812 | @cln1812 | Jul 19 12:29pm

@solobeee1

I already DO exercise - 30 minutes of pilates or walking daily and have been exercising my entire adult life, even through my pregnancy until the day before I went into labor. It hasn't helped the neuropathy. Maybe my anxiety some. I am off benzos and take fish oil which helps anxiety & minor depression a bit. I have done massage, acupuncture, physical therapy and they didn't make a noticeable difference, plus insurance didn't cover most of it so co-pays were a financial consideration. I'm not a health nut when it comes to diet, but my diet isn't horrible. I rarely eat fried foods and try to avoid greasy foods. I eat fresh fruits and vegetables, cheeses, healthy fats. Now, I'm not perfect so I will have lasgna or a piece of cake or a cookie, but I also dealt with anorexia when I was in college, and calorie counting or labelling foods as "bad" or completely off-limits is still triggering to me all these years later. My BMI is normal for my height. All my labs apart from folic acid and iron were normal.

However, bipolar disorder is a crazy disease. Some few people can manange without meds; for most of us without meds, it's even worse. I have bipolar I, the manic symptoms are more severe and can be devastating to your life & relationships - overspending, irritability, rash decisions (driving while manic), inability to concentrate, lack of sleep, well you can just google all the symptoms of mania. But worse, if my mania is not pulled into check quick enough I go into psychosis. During which I blackout 95% of the time for days on end (no memory AT ALL of that time) until treatment kicks in and spend the other 5% hallucinating usually that I am talking to God one on one and I know all the solutions to the universe and how to fix the world. The flipside of course is depression so severe I hate to think what would happen if we owned a gun. All of these mood episodes are severely destructive to my relationships with my husband and daughter. SEVERELY. Even WITH meds, I need tweaks, and no combination works for me over periods of longer than a year of two. Usually stress triggers my relapses. And some stress you just can't avoid. My latest manic episode was prepicitated by hurricane Beryl making landfall very close to where I live & massive power outages.

Sometimes meds are the only choice. And if the meds help both my bipolar and peripheral neuropathy, all the better.