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09-03-2012, 11:22 AM | #1 | ||
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Hi All,
I'm new here, am 63 and am looking for your experiences re treating Meralgia Parestica with Nortriptyline. Mine MP is a result of abdominal surgery (woke up with a numb thigh). It has been determined to be permanent by the top neurology/pain management group here in Albany NY (after 18 months of no improvement). I was told that my LFCN nerve was injured during surgery either by 1) it being stretched-very likely, 2) entrapped-less likely, or 3) severed-very unlikely... And no imaging test can determine the exact damage. I have the numb spots, prickly spots, shooting pains, and can't stand to even put lotion on my thigh. I'm quite anti-medication and only used anti-inflammatory meds for the first month with minimal relief and was worried about taking them because I also have an acid reflux problem. So I decided to brave the gabapentin that was prescribed....and it worked. I started out with 300mg/day and worked up to 1500mg/day. I hated the side effects of it though -- very hyperactive, irritable and non-stop talking. So I decided to wean down to a tolerable level which ended up being 500mg/day -- just couldn't miss a dose though without the sharp pains starting, and I'm not that much less irritable either :-). I had one nerve block which did nothing. And the highest neuro/pain doc said those blocks rarely work for permanent relief, if at all -- that the LFCN is too big. He also said he wouln't recommend any of the remaining solutions (additional blocks, radio frequency ablation, severing the nerve surgically, etc) -- they have been clinically proven to have high chance of causing worse pain or further complications. He said that medication is the better gamble, and if I'm still having a problem with gabapentin side effects, he would like me to try weaning down off that and start taking nortriptyline (a supposedly mild antidepressant that works on some people for nerve pain also). I tried the nortriptyline for about 3 nights and even though it's suppose to make you sleepy I was awake about 2-3 times during the night very irritated by dry mouth and dry eyes. I gave up on it because I was going on vacation and am now thinking about trying it again. SO....DOES ANYONE HAVE EXPERIENCE WITH NORTRIPTYLINE working for MP and having the side effects of non-sleep and dryness diminishing -- if so, how long after starting it? I read a few reviews about it also making you sick if you drink alcohol with it, but am wondering if only a few cocktails occasionally still can cause you to get sick??? I hope my info is useful and am anxious to hear back from someone successfully using nortriptyline. Thanks for reading my story. |
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09-22-2012, 12:16 AM | #2 | ||
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Hi! I shared a similar path to yours. I was up to 1500 of Gabapentin a day. It seemed like it worked less and less and I had to increase the dose more and more. The amatriptyline was a godsend to me but the BIGGEST help to me was my round of Capzasin cream. It was a pain, and even painful at times but it worked! A very thin film on the painful area of the leg five times a day for one week, then three times a day for a week, then wean down as necessary. This was recommended to me by a neurologist at Northwestern University after trying EVERY medicine possible. I cried because I did not think it would work. It did..I still have it...but now I have dropped the gabapentin completely and only use the amatriptyline at night. At first the amatriptyline made me completely zombified. Now, it has no effect on me. I do occasionally drink alcohol with no problem. I do notice the dry mouth, but it is nothing compared with the MP pain that I had.
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"Thanks for this!" says: | Eve92009 (11-13-2017), ShaggyChic_1201 (07-09-2016) |
09-22-2012, 05:01 AM | #3 | |||
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Wisest Elder Ever
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I had a complete remission after 14 days of using Lidoderm patches. (this was after years of pain from a C-section damage).
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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02-05-2013, 12:14 AM | #4 | ||
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Junior Member
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Gabapentin theraputic dose is 2400-3600mg for someone with MP. You were taking far too little to even get over the Ramp up Side Effects. Once you are up there for a week or so, you get your "Words" back, and most of the intolerable side effects are gone. It is also key to get up there sooner than later. Alternately try Lyrica (Pre-Gabapentin), mg wise it is about 10x lower. 600mg max dosage is equivilent to 3600mg of gabapentin. With either of these drugs once your body is tolerating it, the drowsy and drunken feeling goes away.
Buy stock in Lidocaine patches.. just remember to shave your leg before you put it on! have I said that before? Rob Quote:
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05-24-2013, 10:54 AM | #5 | ||
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06-03-2014, 09:32 AM | #6 | ||
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Sounds like you are on the right track. It has been almost two years now since they cut my LFCN, and I still have some hip and thigh pain. Because I was favoring my other leg so long, there was some bursitis in my hip, as well as my IT band was tight. Still fighting with those things, but I am in the pool 2-5 times a week doing deep water aerobics and water walking, if I miss a week I know it!
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06-13-2013, 01:41 AM | #7 | ||
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10-09-2014, 04:07 PM | #8 | ||
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10-09-2014, 07:28 PM | #9 | ||
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Hi sidster,
I know you are looking for someone that has had surgery for MP and want to know how it went. Your post seems directed to Wendy since she had the surgery. She has not posted since June of 2010 so I am not sure you will get a response. Just so you don't feel left hanging, I thought I would jump in and respond. Surgery for MP, if done by the correct surgeon, usually has excellent results but there are also some that have stated it was a failure. Personally, I think there are a limited number of surgeons that are successful at removing the LFCN or correcting the entrapment. It is very difficult to find someone not only willing to do the surgery but also well versed in MP and capable of performing it successfully from my research on the matter. Finding someone here that has had a successful MP surgery may be rare because they are cured and busy living their life, free of MP pain. A few things to note about surgical removal of the LFCN. The thigh area affected will be numb forever and you do not come out of recovery magically without pain in your thigh. It takes several months before the pain sensations disappear. From those that have had the surgery, they have said it took several months before they were sure that the surgery had been successful. For those that have had successful removal of the LFCN, they are thrilled to be free of the pain. Not all that have undergone the surgery have had successful outcomes. Do you have a surgeon ready and willing to do the surgery? Have you considered radio frequency ablation of the LFCN? |
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06-13-2015, 09:46 AM | #10 | ||
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Hello, Wendy, my husband had that same surgery a month a go and did not help so they are going to do the LFCN hopefully soon..he has not been working for about 5 months. No one knows this pain they look at you and see that you look fine but inside you are dying..I totally AGREE, keep on the doctors till you get releife because most only want to give you drugs for the rest of your life and that does not work for us...we have lives to live...
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