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Old 09-22-2012, 01:16 AM   #11
IWantToCutMyLegOff
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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.



Quote:
Originally Posted by louleg View Post
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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Old 09-22-2012, 06:01 AM   #12
mrsD
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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).
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Old 02-05-2013, 12:14 AM   #13
rMuD
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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:
Originally Posted by IWantToCutMyLegOff View Post
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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Old 05-24-2013, 11:54 AM   #14
kemcancer
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Quote:
Originally Posted by rMuD View Post
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
This is great information,as I was prescribed neurotin 400 mg x 3 a day then prescribed Lyrica 150 mg x2 a day by my new doctor about 3 weeks ago.So far the Lyrica is working for the shooting pains,but I still have thigh and hip pain,but not as severe as before use.I have the patches and will try them .
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Old 06-13-2013, 02:41 AM   #15
Hopeless
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Quote:
Originally Posted by IWantToCutMyLegOff View Post
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.
I know the feeling of wanting to cut off your leg. I had my first "attack" of MP in 1977 following abdominal surgery. For serveral years, the pain only happened occasionally, especially when standing or walking for prolonged time period. As the years went by, the frequency and intensity progressed. For years I was ignored, dismissed, mis-diagnosed, etc. One orthopedic surgeon wanted to operate on my spine for a disc problem but I refused since the area was not related to my leg pain by basic anatomy. The disc healed on its on but the pain in my thing remained. The severity of the pain became debilitating by 2004 and I had to quit working as I could no longer perform my job duties due to the constant pain. I have tried it all. Physical therapy, oral meds, lidoderm patches, TENS unit, spinal injection, also injection directly into the LFCN. Had MRI's, NCS/EMG, x-rays, etc. I used my life savings up and finally applied for disability and was denied. I have become a shut-in as just going to the grocery would cause so much pain I want to cut off my leg. If someone has not experienced this condition, they simply discount you. I was told by one doc,... you have a pinched nerve, like it was nothing so why even mention it. I have been told that the only option left is surgery but they do not think it will help since I have had the condition so long and surgery could actually make it worse. Until about a year ago, I had relief while I slept since I always sleep on my stomach. Now, I will get electrical shocks during sleep that are so strong, they wake me and I am up the rest of the night. I have never wished ill on another but there are times I wish some of these doctors would experience what I do just for one day so they wouldn't simply say, oh, you have a "pinched" nerve like it was no big deal.
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Old 06-03-2014, 10:32 AM   #16
rMuD
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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!

Quote:
Originally Posted by kemcancer View Post
This is great information,as I was prescribed neurotin 400 mg x 3 a day then prescribed Lyrica 150 mg x2 a day by my new doctor about 3 weeks ago.So far the Lyrica is working for the shooting pains,but I still have thigh and hip pain,but not as severe as before use.I have the patches and will try them .
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Old 10-09-2014, 04:50 PM   #17
sidster
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Originally Posted by WendyNZ View Post
Hi.

Well, I had the surgery a week ago and the jury's still out: I had decompression surgery by an orthopaedic surgeon 8 months ago ("surgical release'') and this time the neurosurgeon who was going to sever it actually couldn't find the nerve - it must have gone into hiding!! He spent over 2 hours trying to find it so I still have some residual pain at present at the wound site.

But so far the burning thigh pain has not returned so maybe all the digging around may have helped - you can probably tell I'm am optimist...

I wouldn't contemplate surgery lightly but am only 44 and have had this pain daily now for over 2 years now and can't face the prospect of another 40 I'll post again when the healing's completed.

Wendy
Did you have a previous MRI- Neurography before this surgery to locate ethe nerve.
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Old 10-09-2014, 05:07 PM   #18
sidster
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Quote:
Originally Posted by WendyNZ View Post
Hi everyone

I've had MP for over a year now and I share your pain The cause is unknown in my case but it's possibly related to my chronic inflammatory arthritis (an auto-immune disease). I also had a hip replacement on that side 3 years ago.

I've had all the conservative treatments including steroid injections, Neurontin etc and I also had nerve decompression surgery in May 2009. That fixed it for 3 months and then the pain slowly returned, along with the numbness. The neurosurgeon I saw today says that sometimes scar tissue from decompression surgery recompresses the nerve and then the whole thing starts over again... So I'm having the nerve (the LFCN) cut (sectioned) next month and fingers crossed it will provide a permanent solution.

The one piece of advice I have for those newly diagnosed is to speak up and keep complaining about the pain - I have had nights when I'd go to bed and cry (because it's always at it's worst for me at the end of the day).

Best wishes,
Wendy
How was the surgery and treatment? Is it working for you.
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Old 10-09-2014, 08:28 PM   #19
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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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Old 06-13-2015, 10:46 AM   #20
mary212121
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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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