Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@johnbishop

Hello @pamelaz, Welcome to Connect. I have no experience with Nortriptyline but @melody12 @patriciao @artscaping @sharonbrenna and @rwinney have posted about it in other discussions and may have some experience to share with you.

Have you been diagnosed with neuropathy? Do you mind sharing a little more about your diagnosis and symptoms?

Jump to this post

My legs and feet and thighs burn, numb and prickly all over.

I do have GERD.

REPLY
@srm2009

I agree. At first it seems counter-intuitive what with the foot pain. I've been pleased with the "SB SOX" brand, available through Amazon.

Jump to this post

Those are the same sox I am using! I recommend them. A bit hard to get off...

REPLY

A few years ago, I started having stinging, burning, slight intermittent numbness, and crawly feelings in my feet and lower legs. Mayo clinic website said to try Alpha Lipoic Acid supplement. I did and it has been a godsend. The first year I took it every day, now every other day. Once in a while a breakthrough sting hits but it goes away quickly. I also take a super B complex daily. Anyway, I think I got after it before it was too bad and have been blessed. Maybe it will help you too. I have been leery of taking drugs because they can make you gain weight and mess with your brain chemistry. Both are not options I have wanted to do unless I have no choice.

REPLY
@pamelaz

The Nortriptyline felt like I was being stabbed in my shoulders, thighs and legs. Will this go away?

I, also, have GERD.

Tylenol is also horrible on my neuropathy.

Legs, feet, thighs all burn bad.

Jump to this post

Good evening @pamelaz, your report on side effects from Nortriptyline is quite concerning. I have reviewed several lists of side effects and don't see the "stabbing" that you mention even in the occasional list. Overdoses can increase the level of the side effects. So, I am unable to answer your question....." will it go away?".

Sometimes, your pharmacist is the best one to contact about side effects. I have had the same pharmacists, Mike, Rick, and Stacy and they check everything for me. They also may have information about ways to make it go away like the time of day that it is taken and other medications interacting with the Nortriptyline.

How is Tylenol impacting your neuropathy? I will be using Tylenol next week after my bladder surgery so I am wondering. I haven't taken it in years and yet I don't want opioids.

Just a question.....have you used any topicals on your legs, feet, and thighs? There are compounding pharmacies that can use a unique lidocaine-based recipe that your neurologist or other clinician recommends. I used that for quite a while until I found I could replace it with a medical cannabis topical that, for me, relieves me of tingling, numbness, and pain. It is available in two different dosages....one for acute pain and one for chronic pain.

Would you be interested in trying medical cannabis? It has been controlling my neuropathy pain and tingle tangles now for several years.

May you be free of suffering and the causes of suffering.
Chris

REPLY
@summerstar

A few years ago, I started having stinging, burning, slight intermittent numbness, and crawly feelings in my feet and lower legs. Mayo clinic website said to try Alpha Lipoic Acid supplement. I did and it has been a godsend. The first year I took it every day, now every other day. Once in a while a breakthrough sting hits but it goes away quickly. I also take a super B complex daily. Anyway, I think I got after it before it was too bad and have been blessed. Maybe it will help you too. I have been leery of taking drugs because they can make you gain weight and mess with your brain chemistry. Both are not options I have wanted to do unless I have no choice.

Jump to this post

Welcome @summerstar, Thanks for sharing what has helped your symptoms. It's really great when you find something that provides relief. Did you ever go to your doctor or a neurologist for a diagnosis?

REPLY

Yes, of course, I went to the doctors and specialists. I was surprised Mayo Clinic would suggest trying ALA and even more suprised that is actually worked. This is a quote from the Mayo website under alternative treatments: "Alpha-lipoic acid. This has been used as a treatment for peripheral neuropathy in Europe for years. Discuss using alpha-lipoic acid with your doctor because it can affect blood sugar levels. Other side effects can include stomach upset and skin rash." I personally never had any side effects at all, and it has been nothing but helpful for several years now. I noticed a difference after a few days and it just got better with time.

REPLY
@pamelaz

Has anyone tried Nortriptyline?

Jump to this post

Nortriptyline has worked the best for me in controlling nerve pain in my feet. However, I only use it sporadically and mostly rely on a heating pad at night. I couldn't tolerate Lyrica or gabapentin.

REPLY
@pamelaz

The Nortriptyline felt like I was being stabbed in my shoulders, thighs and legs. Will this go away?

I, also, have GERD.

Tylenol is also horrible on my neuropathy.

Legs, feet, thighs all burn bad.

Jump to this post

Unfortunately the stabbing is a part of the disease. It has ups and downs. Sometimes you get them a lot then you will go weeks without them. The only thing good about them is the pain subsides almost instantly. It’s painful ( unimaginable pain) like being stabbed but it’s like when the knife comes out the pain goes away and there is no residual pain after. But I would be so worried when the next one would come I would tense up. That tensing up made my neuropathy worse.
I hope you can find some comfort. It’s a cruddy disease.

REPLY
@pamelaz

Has anyone tried Nortriptyline?

Jump to this post

Yes, a few years ago, my doctor recommended I try it to help manage my chronic cervical (neck) pain/compressed nerve pain I was suffering from, which since I'm happy to say resolved totally from using a simple traction device I at home that my orthopedic doctor recommended. It worked amazingly! I don't reach for it much now since all that bad pain just disappeared.

The Good: When I took the nortriptyline (for about a year) one benefit was I noticed was my Peripheral Neuropathy (numbness of toes) discomfort during sleep was reduced significantly. And, it helped me sleep more soundly, a great thing.

The Bad: Unfortunately, for me, even at the lowest dosage, I could never cope with the minor sedation effect of taking the nortriptyline
... it impacted my ability to get up out of bed and start my day easily. So I stopped taking the med.

I still have the PN numbness and have had learned to live with it for 14 years by wearing warm (not tight) socks in bed, daily exercise (walking), and the OTC Turmeric I started taking last year that appears to help. I tried Gabapentin after my PN diagnosis, but it did not help.

REPLY
@pamelaz

Has anyone tried Nortriptyline?

Jump to this post

Yes. I take 40mg. of Nortriptyline at bedtime along with 100mg. of pregabalin, otherwise known as Lyrica, and it works for me. Without it, I would be in pain.

REPLY
Please sign in or register to post a reply.