[groucho]

I recently started taking Gapapentin for PN nerve pain. I've read across the web that after one has been on it for a time, that you develop tolerance to the drug, & your dosage must be upped in order to receive the same pain relief. I also have found that when taking it 3x a day, as prescribed, that it wears off between doses. Does anyone have experience on this?

I have a friend on Nortriptyline, and he says his Neuro told him that once he finds a dose that works for him, that's his dose for life.

[groucho]

Can it be with all the folks on this website, and Gabapentin being one of the most prescribed medicines for PN, that there isn't a soul here that can share their experience with the drug with me? It seems that most must be getting relief with vitamins, but that hasn't occurred for me.

[mrsD]

Yes gabapentin does create tolerance.
People in whom gabapentin works (about 30% of those who try it), find that over time they may have to increase doses, because the previous dose stops working.

The same effects happen with Lyrica. Some patients therefore end up on very high doses of these two medications.

Things are slow here sometimes, just be patient and people will likely respond. It could be that not many current members here are using gabapentin at the moment.

You might try searching old posts for members in the past who have moved on.

[Susanne C.]

I have been on the same dose, 600 mg 3 times a day, for about three years. It may be decreasing in effectiveness, I am noticing more burning, tingling, and the feeling of things running across my feet lately. It does work for me in that if I skip a dose I have electrical zaps and more burning.
I will probably not increase this dose any time soon because I do not currently have side effects, and I would expect to at a larger dose. I have not gained weight on it, as many do, and with my muscle weakness i definitely want to avoid that. Most of my pain, I have CMT (hereditary neuropathy), comes from my legs, and I take oxycodone for that.

Supplements are not really that helpful in my case, except for maintaining general health- b12, fish oil, d3.

[groucho]

Originally Posted by Susanne C.

I have been on the same dose, 600 mg 3 times a day, for about three years. It may be decreasing in effectiveness, I am noticing more burning, tingling, and the feeling of things running across my feet lately. It does work for me in that if I skip a dose I have electrical zaps and more burning.
I will probably not increase this dose any time soon because I do not currently have side effects, and I would expect to at a larger dose. I have not gained weight on it, as many do, and with my muscle weakness i definitely want to avoid that. Most of my pain, I have CMT (hereditary neuropathy), comes from my legs, and I take oxycodone for that.

Supplements are not really that helpful in my case, except for maintaining general health- b12, fish oil, d3.

Taking 3 years to feel the need to up your dose doesn't sound too bad. I just started taking the Gabapentin at the end of June, & I had to go up to the same dose you are taking to get relief from the "folded sock" behind the toes, which causes me the greatest pain, when AI walk. I really feel that it's wearing off before the next dose, and that I should be taking it 4x a day. I've had a slight weight gain, a bit of short term memory loss, and I feel a bit tired, but that's about it. In a way I'd like to switch to the Nortriptyline, but worry about new side effects.

[Susanne C.]

Originally Posted by groucho

Taking 3 years to feel the need to up your dose doesn't sound too bad. I just started taking the Gabapentin at the end of June, & I had to go up to the same dose you are taking to get relief from the "folded sock" behind the toes, which causes me the greatest pain, when AI walk. I really feel that it's wearing off before the next dose, and that I should be taking it 4x a day. I've had a slight weight gain, a bit of short term memory loss, and I feel a bit tired, but that's about it. In a way I'd like to switch to the Nortriptyline, but worry about new side effects.

I think what we are taking is about the minimum effective dose, if it is going to work at all, as Mrs. D said. A lot of people, especially men, seem to be on 2400-2700 mg. I am 6'2", but women, even big ones, seem more sensitive to meds. I have not heard of Nortriptyline as a substitute for gabapentin, rather in combination with it.

My neurologist seemed to view the primary job of the gabapentin as making sure I could sleep at night. My first dose is when I wake up, but the two later ones are at dinner and bedtime, no more than four hours apart usually, so I have it built up when I go to sleep. It does work. I can't take oxycodone at night as it wires me up. I use it for housework, walking, shopping, etc. I have the feeling of walking on large stones, probably the equivalent of your folded sock feeling. I wanted to take my boots off yesterday and check whether my socks had slipped down and bunched up, but of course they hadn't. My pain med muffles the feeling, but it never goes away.

It doesn't hurt to try different things, in fact you must to have any quality of life. PN is really idiosyncratic and everyone seems to have a different pain protocol. I blame the memory loss on being a 51 year old woman, but I do have slightly blurred vision which may be the gabapentin. I have (had?) a photographic memory so still get by, but am relying more on lists. Then I forget the lst...

[groucho]

My Neurologist gave me the impression that he didn't usually have to give out the 600mg Gabapentin, as his first mention of them, he said 600mg capsules. And from researching the meds, I already knew they were a scored pill. I've cut them in half, dropped down my dosage to 300mg 3x daily, & worked my way back up. When I space the 3 pills out for the day, the pain returns for maybe 3 hours in the middle, while one pill is wearing off & the other is taking over. I've got some "extra" pills & may try making a half pill 4th dose, at bedtime, spacing them about 5 hours apart. The pain doesn't bother me at night much, so guess I'm lucky, but yes. It does some times feel like a big rock in my shoe when I walk too much.

I'm 12 years older than you & also get a bit blurry eyed at time from the Gabapentin, but it's not constant. My Navy buddy that I'm in contact with, couldn't tolerate the Gabapentin. Laid him out on the floor. When I first started taking it, and working my dosage up, I got a couple of rather unpleasant "highs" out of it, but they started to fade after about an hour. Anyway, he got put on the Nortryptyline, starting with 10mg at bedtime & is now at 20mg at bedtime. My Nero said he would give me either drug (whichever I was happy with) or a combination of both, if I felt I needed it.

I don't feel a personal need for anything beyond one drug, for the time being. I don't need to be on my feet a lot. Although I'd prefer to take something once daily, I already know the side effects I'm dealing with, so will probably experiment with the 4th dose for the next month & give my Neuro a call for that extra daily pill. Once I get enough in me, it seems to numb the "folded sock" so that it's somewhat comfortable walking. It does kind of feel like a long rock settled right in behind my toes and ahead of the ball of my foot, when it gets painful.

My Neuro doesn't care to see me often (guess he's not greedy), so I may make an appointment in the spring and ask more about the Nortriptyline, if it continues to work well for my buddy. He's not complaining about side effects.

[mrsD]

The advantage of Nortriptyline (and its parent compound amitriptyline) is that there is a study showing this drug increases
nerve growth factors. Nortriptyline is the active metabolite of amitriptyline.

The down side is if you have prostate, or glaucoma problems,
then it is not a good idea for you.

Gabapentin does NO healing...it is for symptoms only.
Doctors like to give gabapentin because it is not metabolized by the liver so it does not interfere with other drugs.

But the downside is that it is only marginally effective, and a new metastudy analysis found it only effective in about 30% of people.

I think you should start investigating some supplements and see if they will help. I don't recall if you have started that yet?

[judiesva]

Susanne-may I ask what kind/feeling of pain you have in your legs? My neuro thinks I have a "genetic" form of pn. He has never mentioned any treatment for pain and only started me on gabapentin (which did kill most of the electic jolts) but I really did not like how I felt on it and have discontinued taking it. My feet and legs constantly ache and burn. Sometimes my feet feel so swollen, like they will explode, but when I look at them they are perfectly fine. I especially have a hard time walking when I first get up in the morning. I have some hydrocodone (vicodin) left over from a previous surgery and take it every once in a while if they pain becomes unbearable. Are most neuro's open to prescribing pain meds?

Thanks-

[groucho]

Originally Posted by mrsD

The advantage of Nortriptyline (and its parent compound amitriptyline) is that there is a study showing this drug increases
nerve growth factors. Nortriptyline is the active metabolite of amitriptyline.

The down side is if you have prostate, or glaucoma problems,
then it is not a good idea for you.

Gabapentin does NO healing...it is for symptoms only.
Doctors like to give gabapentin because it is not metabolized by the liver so it does not interfere with other drugs.

But the downside is that it is only marginally effective, and a new metastudy analysis found it only effective in about 30% of people.

I think you should start investigating some supplements and see if they will help. I don't recall if you have started that yet?

I made the request for gabapentin, and don't know what My Neuro would have suggested first. I do like to have a beer or glass of wine at bedtime, and since Nortriptyline is normally taken at bedtime, I'm not sure how that'd work. LOL. I did tell my Neuro that & he said he didn't think one beer or glass of wine would matter much for either drug.

Since I finally got close to a working dosage, I think another 300-600mg of Gabapentin would have me feeling reasonably good. I don't know how the Nortryptyline would compare, although my buddy reports similar odd feelings, like my own, going thru the feet, while getting used to the med.

I take a Centrum Silver equivalent, 800mcg folic acid, 100mg B1, 2,000mcg B12, 50 mg B6, and 900 mg of ALA. I tried the more expensive Benfotiamine (300mg daily) for about 3 months & decided it wasn't worth the expense, since I didn't feel a difference. I started the ALA way before seeing a Neurologist, & it eliminated the 'crawling' feeling in my feet & lower legs & slightly reduced my pain. I didn't give my Neuro a chance to explain, but he said he didn't like ALA. He did recommend Folic acid to me, as my homocystine level was high.