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Old 09-08-2013, 10:46 AM #1
Synnove Synnove is offline
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It has been a long battle for me getting the most effective medication for my neuropathy, (SFN, and long fiber, sensory motor and autnomic neuropathy) and the battle is not won yet.
I started out with Gabapentin a year ago, and had to increase the dose constantly until I was on such a high dose. I had side effects with dizziness and sometimes difficulties with certain coordinations and orientation.
I was switched to Lyrica. The same here, I needed high doses. I was up to 500 mg daily. This med has some similar effects, but not as severe. I can tolerate it better. But now, my neurologist suggested a combination of Amitriptyline and Lyrica. I think he feels this is the best med for the neuropathy.
I started slowly to introduse Amitriptyline in a low dose. And then, after this was getting tolerated in the body, they (neuro and rheumy) slowly verry slowly started to reduse the Lyrica. Then we increased the Amitriptyline at regular intervals.
But then, with Amitriptyline up to 50 mg daily, I got severe side effects with dry eyes and mouth. so we decrease again with Amitriptyline and increased Lyrica a little

The neurologist said that the Amitriptyline should be increased very slowly, so I will try. He said with very slow increase the body will tolerate it. I hope I will be able to tolerate the Amitriptyline and some Lyrica ( but low dose)
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Old 09-08-2013, 11:10 AM #2
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Sorry, Synnove, I intended "that's wonderful to hear" as a response to Bluebelle. Thanks so much for sharing your longer and tougher journey. I don't have a firm diagnosis yet, but the neurologist says it's not JUST small-fiber, and I've detected some signs of what may be autonomic--so I may be facing the same triple threat you are. (And it's all still "idiopathic.")

As for the side effects of amitriptyline (which is supposed to be a form of nortriptyline), I started on 10 mg nortriptyline and increased by 10 mg a week, and that did seem to minimize dizziness and even dry mouth.

I hope I don't have to increase gabapentin too much. I don't like the prospect of a medication that induces some of the same problems -- such as coordination problems -- as the disease I'm taking it for....

Good luck with your current meds strategy, which makes sense to me.
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Old 09-08-2013, 04:59 PM #3
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ChaucerFan,yes, Amitriptyline and Nortriptyline is the same med. And, basically, gabapentil and Lyrica is in the same class, only Lyrica is the newest. Amitriptyline has been around for a long time.

So, are on 50 mg og the Nortriptyline, and you are tolerating that well? That sounds great, and with only 200 mg of Gabapentin in addition.

You see, I too, started with 10 mg of Amitriptyline daily for about 2 weeks, then I increased to 20 mg. Then my rheumy ordered 25 mg daily, and to increase to 50 mg in 1 week. I tell you, after 2 days I could hardly blink my eyes, the eyelids would not move, for dryness. and my mouth was like sandpaper, and I could hardly talk.
So we went right back to 30 mg daily, with 350 mg Lyrica. The dryness have gon( I am using artificial tears and Restasis and all kinds of mouth moisterationer.)
Neuropathy is still relentness!!
I hope that I can gradually increase the Amitriptyline, I think that is a good med for this. My neuro said he had pations ob that with 150 mg. He said, the tapering has to be gradual and slowly.
Hopefully, we all do not need any of this stuff anymore!!
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Old 09-08-2013, 06:09 PM #4
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Funny--my neurologist wanted me to go from 25 to 50, and I thought that would be too big a jump. (Of course the stuff is manufactured in 10, 25, and 50 mg. pills.) But I persuaded him to give me a script for one 25 and one 10 per night, and that's probably why I didn't have a problem tolerating the increase. By the way, another neurologist said she has people go to 75, but mine didn't think I'd get any more benefit at 75 than at 50. It's all trial and error. Anyway, best wishes for a low-pain day tomorrow!
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Old 09-10-2013, 12:07 AM #5
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Amitriptyline and nortriptyline are in the same class—both are tricyclic antidepressants—but they are not the same medication. Amitriptyline is a first-generation tricyclic, while nortriptyline is second-generation, and as such, generally has a lower incidence of side effects than amitriptyline, just as pregabalin generally has a lower incidence of side effects than gabapentin.

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Old 09-12-2013, 10:35 PM #6
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Dr. Smith, thank you for information on those meds. I did not realize, I thought they were just different trade names. Now, that you told me that, I will be asking the doctor to change to Nortriptyline. ( is it generic yes?-- I hope) With less side effects, that would be worth a try.

And I apologize for not having this right in my previous post.
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Old 09-13-2013, 01:47 AM #7
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Yes, nortriptyline is available generically.

No biggie—everyone makes mistakes. That's why they put Backspace and Delete keys on keyboards, and EDIT buttons on postings, right?

Tip: The convention (and again it's no biggie) is that trade names are capitalized and generic names are not (unless beginning a sentence), e.g. Neurontin/gabapentin, Lyrica/pregabalin, Elavil/amitriptyline, Aventyl/nortriptyline.

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Old 11-26-2013, 09:26 AM #8
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This is the very thing I discovered when I was looking around for an answer to my atypical trigeminal neuralgia pain.

However, my stomach is a war zone since I have GERD and went on many meds after developing this very horrible pain after some dental work (didn't have any pain going in).

I DID notice those that were getting improvement were taking some sort of combo of a tricyclic and Gabapentin.

Well...guess what? I take Desipramine (tablet) and a compounded cream and in that cream is Gabapentin.

I also keep my B12 and D levels optimized.

Improvement!

Last edited by Vowel Lady; 11-26-2013 at 09:56 AM.
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Old 09-29-2013, 11:14 PM #9
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[QUOTE=Synnove;1013129]It has been a long battle for me getting the most effective medication for my neuropathy, (SFN, and long fiber, sensory motor and autnomic neuropathy) and the battle is not won yet.
I started out with Gabapentin a year ago, and had to increase the dose constantly until I was on such a high dose. I had side effects with dizziness and sometimes difficulties with certain coordinations and orientation.
I was switched to Lyrica. The same here, I needed high doses. I was up to 500 mg daily. This med has some similar effects, but not as severe. I can tolerate it better. But now, my neurologist suggested a combination of Amitriptyline and Lyrica. I think he feels this is the best med for the neuropathy.
I started slowly to introduse Amitriptyline in a low dose. And then, after this was getting tolerated in the body, they (neuro and rheumy) slowly verry slowly started to reduse the Lyrica. Then we increased the Amitriptyline at regular intervals.
But then, with Amitriptyline up to 50 mg daily, I got severe side effects with dry eyes and mouth. so we decrease again with Amitriptyline and increased Lyrica a little

The neurologist said that the Amitriptyline should be increased very slowly, so I will try. He said with very slow increase the body will tolerate it. I hope I will be able to tolerate the Amitriptyline and some Lyrica ( but low dose)


Hi Synnove

How are you doing with the Amitriptyline & Lyrica? Its been and still is a long battle for me too. I take 300 mgs Lyrica for Small fiber Neuropathy. It took 9 months to get here and the Lyrica is not helping as much as it could. My Neuro doesn't want to increase my dose. I recently started Amitriptyline 10 mgs a night. I also started very slowly. I took 5 mg (split pill) for a couple of mos. It helps me sleep, but I do not see a difference in my pain yet. I'm hoping I do not have to go much higher. I see you got up to 50 mgs. Dont think Ill make it that high. How "slowly" was your increase? Are you still feeling better with this medicine combo? Do you have any side effects with the lyrica? I had a lot of dizziness and my stomach was bloated for the first few mos but thats better now, so far no weight gain. But now my hair is falling out, not patches, but a lot of shedding. Needless to say Im very upset about this. The Dermatologist said to wait 2-3 months to see whats happens before I have to stop taking Lyrica. Did you have this problem with your hair? Sorry for the ramble and all the questions. just confused and depressed. Thanks..
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Old 11-08-2013, 10:57 PM #10
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I was previously on Neurontin and felt that it helped for a while and over time the effects slowly went away so my dose was increased and increased until I got to 900mg 3 times a day. It got to the point where it wasn't working anymore. Then I was on nortyptiline for migraines, but it didn't help. Do you think it is worth it for me to try the 2 in combo?? Or is it a waste of time and money?

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