Anyone using Nortryptelene for Neuropathic pain?
 

I'm not getting any answers whether anyone's tried both Nortriptylene and Gabapentin. I'd be interested if anyone has just tried Nortriptylene for peripheral neuropathy in their feet, their results, and doseage. I've got the numbness, pins and needles, burning pain, and a friend and I both have a very uncomfortable "folded sock" syndrome behind our toes.

Many people who have come here, and some who are still here,
have used one or both of those medications for their PN.

High doses of nortriptyline (or amitriptyline) are not usually necessary. And there is some new evidence that the --triptylines enhance peripheral nerve growth factors.

I tried amitriptyline last year briefly, but it made my blood sugar go up some. It didn't do much to my nighttime pain, but I didn't stay on it because of the blood sugar changes. I don't think they have that effect on everyone though.

I never took gabapentin. If it had been available back when I was severe, I probably would have tried it at least. But my pain issues are not severe anymore, so I have no desire to do it now.
There are meta study evaluations for gabapentin now available on the PubMed that claim only about 30% of pain patients respond to gabapentin. So keep that in mind.

This post discusses gabapentin and Lyrica (which are related and very similar)
http://neurotalk.psychcentral.com/post829091-8.html

Luckily, I am not diabetic. I am presently on Gabapentin, but am not satisfied with the results, and am weaning back down. The Neurologist told me he'd give me the Nortryptelene if I wasn't happy (or a combination of both) My friend (out of state) seems to be happy with the help he's getting from the Nortrypt, but maybe he's just easier to please. LOL. I Googled your statement regarding these meds helping to regrow nerves, but I found nothing on it.

Here is the link to the article:
http://psychcentral.com/news/2009/06...tors/6761.html

Some others:
http://www.ncbi.nlm.nih.gov/pubmed/19748184

This is Ye's full article:
http://www.ncbi.nlm.nih.gov/pubmed/19549602

Thanks, mrsD. I'm going to email that first link with less technical talk, to my out of state friend. I think he'll be happy to know that in the long run, the Nortryptelene may be of more actual benefit that just cutting his pain.

Hi groucho,

I recently started taking nortriptyline about three days ago, it seems to be helping with my pain. It is to soon to tell what the complete benefit will be, because it can take up to 2 weeks for the drug to reach it's maximum effectiveness.
It is also worth mentioning that I am taking the following:
B12 Methyl 5000mcg
Benfotiamine 150mg twice daily
R Lipoic Acid 600mg / split into 200mg 3 times daily

I noticed less burning and pain in my feet when I increased the dose of R Lipoic Acid, so it may be a combination of the two now helping with my foot issues.

I take 25mg of nortriptyline at night before bed and let the effects taper off during the day.
This is helping me some for now, but I am sure it will need modification in the future.

Hi Nervous1,
I've been taking 900mg of Alpha Lipoic Acid for several months now (3-300mg gel caps that I found easier on the stomach). I cut the pain very slightly and about eliminated the so called stocking-glove feeling. I also was taking Befotiamine, for about 3 months with no noticeable effect, and have switched to daily thiamin (B1) tablets. Recently added 50mg B6, 1000mcg (cheap) B12, and 1600mg folic acid. The latter 2 were in the normal range, but my homocystiene level was high. My Neuro recommended the folic acid for this reason to raise my methylmalonic acid (likely due to low folate).

Do you have the "folded sock syndrome" where it feels like there is something behind your toes near the ball of the foot, that you are stepping on, all the time? If so, has the Nortryptilene done anything yet for that. The gabapentin barely touched it for me, but did reduce pins & needles and burning. The numbness isn't very great and pretty much just in my (larger) toes, and is not too noticeable when I first get out of bed in the AM.

I have bolded a very confused statement.

MMA is supposed to be low. When higher it indicates that B12 is not working in the body.
http://labtestsonline.org/understand...s/mma/tab/test What I do think you should do is
take your folate as the methylated active form. If you cannot methylate your B12 and folic acid to their active useful forms, that may be your problem. Folate is give in micrograms not milligrams. 800mcg is the typical dose, OTC.

If your doctor really said that... folate to raise MMA then that says to me he/she does not understand this chemistry. Doctors tend to think low test results are indicative of a problem. Just like high ones also. Doctors commonly worry about high B12, because of this misunderstanding too. If your MMA is in a lower range that is GOOD. And taking folate will not change it.

A test you might want to explore is the DNA test to see if you are genetically not methylating properly. This tests for MTHFR problems.
http://labtestsonline.org/understand...mthfr/tab/test
Having this genetic mutation, can lead to elevated homocysteine levels.

mrsD,

You're on the ball. I didn't look at he folic acid bottle lable, and it is 800mcg. According to my lab tests both my B12 and Folate levels are in the normal range, but the folate is at the top of the scale for normal. Report reads: Homocysteine levels may be increased in both folate and B12 deficiencies. A methylmalonic acid level can differentiate the disorders since it is increased in B12 deficiency but not in folate deficiency. My methylmalonic acid is well below the normal range (at least 30% below end of the normal scale). I would assume my folate is low, and perhaps the Dr did too. My tests do not appear to be indicative of B12 deficiency.

The active form of folate is Metafolin, by Solgar OTC. It is called methylfolate. Folic acid is not active, and there is some concern that it may compete with methylfolate at the blood brain barrier.

This is not definitive yet, but some complex research papers are now suggesting to not use folic acid, but to use the methyl form for this reason. It is not common to be low in folic acid testing.
Our foods are highly fortified today in the US with it.

People with genetic errors in methylating inactive forms of the B12 and folic acid, develop elevated homocysteine. The blood tests for both in serum do not separate out the inactive and active forms. So it is best to take the activated forms since you are paying money already. Best to pay the same $$ and get the most useful. When you have a neurological problem, that suggests a problem metabolically as well. The doctors just haven't caught up with that concept yet.

methylcobalamin == active B12
methylFolate== active folic acid (called MetaFolin).

Thanks mrsD. I'll keep that in mind, I but will use up what I've already paid for, in the meantime. LOL. The levels will all be checked again later this year.

In your earlier post, you mentioned that you had worse pain before than you do now. Since you also mentioned diabetes, I'm guessing you reduced your pain thru diet?

Hi groucho,

Yes! I do have the "folded sock syndrome" mostly in the left foot though. I have a higher arch on the left foot, so there may be a mechanical aspect to this as well. I can feel the fascia underneath the foot in the arch become tight if I walk too much.
And Icant walk very far without this happening.
But, lately with the addition of Noritriptyline, it seems to be helping. My gait is better in the morning and last night the stocking feel was minimal. It is still too soon to tell as I need to attempt to chain together days of walking activity and see if I cramp up or start having foot pain.
Again usually the left is the worse for me.
Let's try to keep in touch since we have a very similar issue in the feet.

My worst pain was over 30 yrs ago... mostly feet, and then hands joined in during my pregnancy. It was because of hypothyroidism.

Now I have some insulin resistant issues (not diabetic yet), so I do control carbs and avoid sugar which helps. I have some spurs in my feet, cracked sesamoid bones, a left foot surgical scar which complicates that foot somewhat from an old tumor removal, and I have to avoid nightshade veggies, which I discovered cause burning for me.

But I haven't had the terrible pain, I had 30 years' back, even with my other foot issues. Back then it was CONSIDERABLE.

So my feet have taken a beating over the years, and now I consider myself lucky to be where I am now, pain wise. I have done hundreds of hours of research on the net over the last decade and I share my experience here and what I have learned as well.

Incidentally, I am in contact with a fellow who I served in the Navy with, who also has it, and is also experiencing the "folded sock". He also started very recently on the Nortriptyline, as he wasn't able to tolerate the gabapentin. He believes our neuropathy may have been caused by possible exposure to Agent Orange, but I have reason to doubt that my own was. It will be another few days before I'm down to 300mg 3x daily on the gabapentine & want to stay at that level for a week or 10 days, just for a reference. Then I'll call my Neuro & he will phone in a prescription for the Nortriptyline for me. So, keep an eye on this thread, and thru me, you can see how another fellow is doing. Might pick up someone else on the way. You never know.

FYI: During my latest increases on the gabapentin, in search of relief, I went from 300mg 3x daily to 400mg 3x daily and again to 600mg 3x daily. During the last 2 increases, I had new strange feelings in my feet. Also some foot joint pains during my last increase & again during the reduction. After my nerves settled down, I felt little change in the "folded sock". The tingling, pins and needles, and burning wee less bothersome to me than the "folded sock", but don't care to get them back until I'm ready to try the N.

Thanks for sharing, mrsD. I love my carbs & would hate to try to live without them.

It didn't click right away for me, but am surprised your Dr started you at 25 mg. My Navy buddy is a big guy & was started at 10 mg daily. He told me just a few days earlier, he had started to use a cane & has been able to go without since starting the Nort, except when he's overdone it & the pain comes back. Not sure when he's going to his Dr, so don't know for sure if he'll be increasing his dose. I'd guess he's been on the N for about 10 days now. I also haven't heard anywhere yet that you build a tolerance to the tricyclics like you do with gabapentin, so I don't know about dose increases down the road.

I think he probably started me at the 25mg because he knew I was slipping into depression and could possibly kill two birds with one stone?

I told my Neurologist, while on a lower dose of Gabapentin, that i was less depressed and less anxious. I discovered while I still felt less anxious, that on the higher dose I was "jumpy". I would almost leap out of my chair while at dinner & my wife's cell went off next to me. (She's always getting calls from the grandkids. LOL)

Hi Groucho,

I have been taking noritryptline for well over a week now and I still have the folded sock syndrome as you put it. But, it seems to be less often and not as bad. Only time will tell.
Again, could also be the R Lipoic Acid helping too.
One thinkI noticed last night is that I had the folded sock feeling in the left foot and it was red/purple and puffy on the bottom of my foot.
Have you noticed that your foot is discolored when you experience the folded sock syndrome?

I haven't noticed any discoloring on my foot. Are you wearing athletic, or comfortable shoes? I find that running shoes feel better, for me, than walking shoes. Less pressure on the folded sock area. My Navy buddy seems to be happy with the Nortrypteline, & since he's willing to consider upping the dose (he's on 10mg), that's saying something, as he hates to take pills for anything. He also has the folded sock. I understand the Nortryp makes you drowsy, & that's why it's taken in the evening. How long does it take before you're ready to call it a night?

I have symptoms any time I'm on my feet. I've cut back on the gabapentin from 1800mb daily to 900. My feet hurt extra while raising the dose & lowering it, too. Maybe because I unknowingly went beyond what actually was giving me maximum relief. Pretty uncomfortable today & it may stay that way until my nerves settle back down. I really want to hold off a little bit until I call the Neuro for a med change.

The drowsiness wears off in about couple of weeks to a month.

Being in the military, you should Google, "toxic bases".

There is Agent Orange, Agent Purple, arsenic and who knows what else at military installations! Previous and current.

I assumed the drowsiness might be an ongoing thing, since you normally take it at night, for pain.

Thanks for trying to steer me to Agent Orange websites, but being a Vietnam Vet and also being my Ship's Association's webmaster, I am very aware of them. The Navy buddy that I mention, whose PN is worse than mine, believes his may have been caused by possible Agent Orange exposure.

I might be wrong, but rather than go into a very long story, I have reason to believe that my PN might be self-inflicted. I'll give you a hint, though, footwear with lousy padding on the insoles that I was too stubborn to stop wearing, as that was what I was wearing when this all flared up. LOL

So...if you suspect a mechanical reason for your foot pain, have you had a good podiatrist work you up? There may be a solution for you, there.

There are just so many things that can affect our feet. Over the more than 10 yrs I have been posting on PN forums, I have seen so many different combinations, and situations. One has to remain open to just about everything where PN is concerned.

I'm way ahead of you. I went to a podiatrist, and she made some test insoles with metatarsal pads. They just redistributed the pain & she told me I might have better luck going back to the chiropractor (in just 2 visits). She said she could give me cortisone injections, but they wouldn't do anything for the "folded sock syndrome".

I'm not a small person & I spent a lot of time in my lousy footwear. I probably really messed up the nerves pretty good. I hate most vegetables, so I have a really lousy diet, & have been taking the vitamins in hopes that the nerves may eventually repair themselves. Don't try to tell me if I want to feel better I need to eat my vegetables. I don't call eating foods that make me want to spit them out any way of (possibly) improving quality of life. More likely just adding to my misery. LOL

Hi groucho,

I am wearing athletic shoes with soft inserts all the time and showering in teva sandals. My feet hurt too bad to hit the ground. Sometimes I take the noritryptline before bed and fall asleep within 20 minutes. If I watch tv, depending on how exciting it is, it could take an hour. There is gotta be something that alleviates the folded sock syndrome.

I have my doubts that any drug is going to give you complete or near complete relief. From what I've read, the Nortriptyline has the best patient reviews, and you're still talking about in the neighborhood of 40% relief. Adding gabapentin to it may add another 10-15% more relief. You probably need to see where this is going first, & talk to your Neuro about combination therapy, if you have that much pain. There are more things you could probably try, such as capsicum cream, but I'm not going to try to take the place of your DR.

Hey Nervous1,

Now that you've been on the Nortrypteline for awhile, how do you feel it's doing for you? My buddy is still on 10mg daily, but mainly because he forgot all about his Neuro's appointment. LOL. I don't know just when he's going back, now. I've decided to stay on the Gabapentin another month, Mainly so the neuro won't think I'm just a nut who can't make up his mind about the meds. LOL.

In the meantime, I'm experimenting with my dosage, as I hate taking it 3 times a day. Just started taking it twice daily right now, but not sure I'll have a bad spot between doses. And my buddy did say, by the way, that the "folded sock" is consistent with him, as it is with me, and always there, but the Nortrypt helps. The Gabapentin helps, too, but still wonder which is better, and will likely ask to make the meds change next month, to find out for myself.

I think it is helping some, mostly helps me sleep. I am also taking R-lipoic acid, this could also be what is helping my feet. As for the bunched up sock feeling, it has gotten somewhat better, seems like it happens less.
My symptoms are all over the place and and recently took up with my hands.
My feet over the last week have started letting me walk consecutively 7 days in a row. I do not know how long this will last, but I am hopeful.
I just started taking magnesium yesterday for the cramping, so I hope this will help too.

I strated taking the Lipoic Acid quite awhile ago, while not on any drug. I noticed the "stocking feeling", if you know what I'm referring to, went away mostly. I would say it also cut the pain by a small amount, 10-15%. The cramps, that I got mainly in my arches seemed to let up on their own, but I've taken different vitamins, an have no idea if it was one of them. The drugs cut the pain more &, I think, make you think about it less, which is also a help.

Do you feel that your pain is starting to come back before it's time for your evening dose? I'm not sure if I can go to twice daily, from 3x daily on the gabapentin,. I've had things to do, so have been more active, and by the time I'm ready for my evening dose, they're starting to get pretty sore at 2x daily. My Navy buddy say's he's too busy to notice, so the Nortrypt must be helping him. He says he sits and puts his feet up when they get too sore. I'll have to find out when he might up his dose.

Interesting. I was just the opposite; RLA eliminated the burning pain completely, but had little/no effect on the numbness/"bunched-up stocking feeling". Adding pantothenic acid (B5) helped most of the cramps, shocks, & needle jabs.

Cutting out sugar (tho I'm not diabetic or pre-diabetic) has helped a great deal in reducing the numbness/"stocking" and edema.

I've been taking amitriptyline for a couple months at nighttime (chronic pain), and I seem to be getting restored feeling in my feet, but it may take more time, and I don't know if I'll ever get complete restoration (but I'll take what I can get! :rolleyes:)

Groucho, have you tried magnesium for the arch cramps?

Doc

I think I didn't explain things well & since I talked about the folded sock, that's what you were associating with the ALA. For me, the ALA didn't do much for the burning, but helped the "stepping on broken glass" feeling. slightly. The stocking-glove I'm referring to, I actually prefer to describe as a feeling that my feet are swollen or inflated like a balloon, but obviously are not. Does that make any sense to you? The ALA, I'm assuming, helped that. Since we're talking about the same drug, basically, do you have a time of the day where it seems your Amitriptyline is starting to let the pain thru again? I'm really annoyed by the feeling I've got something behind the base of my toes. The gabapentin does help, but hate the 3x daily thing & it does feel like it's starting to wear off awhile before it's time for my dose. A higher dose doesn't improve the relief. I take it that you are reasonably happy with your med? I don't have the cramps now & am not sure what made them go away. At what doseage of the amitripyline did you find relief?