Originally Posted by louleg

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.

Originally Posted by IWantToCutMyLegOff

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.

Originally Posted by rMuD

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

Originally Posted by IWantToCutMyLegOff

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.

Originally Posted by kemcancer

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 .

Originally Posted by WendyNZ

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

Originally Posted by WendyNZ

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