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-   -   When Gabapentin doesn't work, what's next? (https://www.neurotalk.org/peripheral-neuropathy/174909-gabapentin-doesnt-whats.html)

chaos 08-16-2012 05:30 PM

When Gabapentin doesn't work, what's next?
 
Saw the doc today, I am up to 300mg of Gabapentin twice a day. I couldn't handle more, and my brain just isn't working like it should. I have a hard time remember the right words and carrying on conversation. Typing is easier. Doc said he wants me at least on a lesser dose and I should start something else. He recommended Norpramin, Trileptal or Cymbalta, I have to let him know what I want after researching. Do any of these work without causing a bunch more side effects? I get migraines and have a sensitive stomach. I take Wellbutrin 300mg a day. I used to take Effexor years ago and I HATE that, I don't want anything even close to it again. I'm also on a generic only insurance plan (but will be changing it in Nov). I'm also starting thyroid meds (not related to this, just a surprise when the blood tests came back) and have been taking a big B vitamin daily.

In little words that a kid can understand, because I feel totally stupid lately, please let me know what some of you have done next and what some of these have done to you.

Also, my pain is from a 2nd/3rd degree burn. Doc claims he doesn't know what is causing it, says I might develop Diabetes in the future, but since I've had that tested quite a few times and know I don't have type II, I asked him if I'll get better or not and he couldn't/wouldn't answer. He said the symptoms are like a diabetic.

Is this something I have to deal with forever? Will it get better eventually? Am I going to be drugged up forever? I'm really worried about work and the future. I have a great job and can't do it if I'm stupid or drugged out all the time. And I can't work if I'm in pain either.

I guess the appt was a little depressing. Here, take more medicine, and no answer to anything.

Nervous1 08-16-2012 06:19 PM

Hello Chaos,

I am sorry you are having to deal with this horrible issue. Hoping things will get better for you! I have similar issue with he meds as well, I am hyper-sensitive to them!
I took Cymbalta @ 20 mg / day for a few weeks and almost lost my job! I cut down to 20Mg, taken at night. It helped me sleep but still gave me a zombie effect. I had issues with sexual side effects, constipation, wild dreams and generally just out of it until it wore off around 7:00 at night. This is not how you are supposed to take Cymbalta, but I had to experiment a little. I quit taking it cold turkey, I do not recommend this, but I had to.
All the medications are going to have some sides, you are just going to have to find one you can tolerate or take natural supplements.

caringaj 08-16-2012 07:00 PM

I was on Gabapentin for about 2 years. Never gave me relief. My doctor put me on Lyrica 50mg 3 times a day. What a difference. Ask your doctor if he can give it to you. Quite expensive though. Good luck

Dr. Smith 08-16-2012 08:58 PM

Quote:

Originally Posted by chaos (Post 906371)
Also, my pain is from a 2nd/3rd degree burn. Doc claims he doesn't know what is causing it, says I might develop Diabetes in the future, but since I've had that tested quite a few times and know I don't have type II, I asked him if I'll get better or not and he couldn't/wouldn't answer. He said the symptoms are like a diabetic.

Is this something I have to deal with forever? Will it get better eventually? Am I going to be drugged up forever?

In this case, I'd try assuming for the moment that you're diabetic, make dietary changes as if you were (eliminate sugar, etc.), and see if your symptoms get any better. Some people are "pre-diabetic" or "glucose intolerant" and can still develop PN. There are some folks in this group (self included) who test negative for diabetes, yet sugar can be a trigger (make their PN symptoms worse).

When you say, "my pain is from a 2nd/3rd degree burn" do you mean that you received a burn that is causing pain, or that the PN causes burning pain that feels like a 2nd/3rd degree burn?

Many of us experience burning pain with PN; it's a common symptom, and one that gabapentin is often prescribed for. Some of us (again, self included) have had some luck taking stabilized R lipoic acid and other supplements you can read about in the Sub-forum. Since I've been taking it, my burning pain is gone, allowing me to discontinue gabapentin entirely.

Depending on the type and cause of PN, this may or may not be something you will have to deal with for life. Depending on the type and cause (and response to treatments/supplements) it may or may not eventually get better (Read the Sticky thread: Neuropathy does improve). I would try to halt it's progression first, and then try to get it to heal. Depending on the same factors, you may or may not be on some kind of medications or supplements for life. Sometimes side effects abate with acclimation and sometimes they do not. A positive attitude can help on all fronts.

I wish I could be more definite, but there are dozens of causes of PN and several types, and everyone is different and responds differently. Unfortunately, there are no one-size-fits-all solutions. It helps, IMO, to think of it as a journey rather than an event.

Information, knowledge, experience, and support are here. They may take some effort and communication. Finding a neurologist who really knows (up to date on) PN can help too, but we all have to help our doctors help us.

Doc

APJH 08-17-2012 08:52 AM

Quote:

Originally Posted by chaos (Post 906371)
Saw the doc today, I am up to 300mg of Gabapentin twice a day. I couldn't handle more, and my brain just isn't working like it should. I have a hard time remember the right words and carrying on conversation. Typing is easier. Doc said he wants me at least on a lesser dose and I should start something else. He recommended Norpramin, Trileptal or Cymbalta, I have to let him know what I want after researching. Do any of these work without causing a bunch more side effects? I get migraines and have a sensitive stomach. I take Wellbutrin 300mg a day. I used to take Effexor years ago and I HATE that, I don't want anything even close to it again. I'm also on a generic only insurance plan (but will be changing it in Nov). I'm also starting thyroid meds (not related to this, just a surprise when the blood tests came back) and have been taking a big B vitamin daily.

In little words that a kid can understand, because I feel totally stupid lately, please let me know what some of you have done next and what some of these have done to you.

I'm sorry to hear about what you're going through. Gabapentin did not work for me either--it did little to ease the pain and it made me feel foggy all day. My work suffered because of it.

I switched to Cymbalta and I find it much more effective. I take 60mg every morning and it definitely takes the edge off the pain, making it easier for me to walk and function normally at work (I have small fiber neuropathy in both feet). I also go to physical therapy twice a week and Cymbalta makes that easier as well. In addition, it helps ease my depression, although I can't say I was ever severely depressed--just kind of "down" because of my condition.

It took me about 2 weeks to get used to the Cymbalta--there were some side effects in the beginning (nausea, changes in appetite, headache). And I am well aware that I will need to wean myself off very gradually when I am ready. I am not looking forward to that part!

Lastly, because Cymbalta is a brand-name drug, it is more expensive. My co-payment for prescriptions is usually $10; for Cymbalta, I have to pay $25.

Best of luck to you!

robpp 08-17-2012 10:16 AM

^^^^^^^

I have been taking 3600mg Gabapentin for a few years now......it started to lose its effectiveness and about 2 months ago my MD ADDED 30mg then 60mg Cymbalta.

I can say that the addition of the Cymbalta has definietly improved my symptoms.

I also agree with Doc above to try a low carb diet. And I follow his BASE set of supplements for many moons.


try

R Lipoic
LCanitine
Pantothenic

I also added B Right; a nice B complex.
D3 - 2000 x 2 a day

get some fish oil omega 3; I take 4 grams of Lovaza per day.






the results: some days I can actually wear socks and NOT RIP THEM OFF the minute I get home.


GL

as you can see by a quick look around everyone struggles to find what works for them. all the rest of us can do is share what works for us/ you will ultimately have to find your own mix.

Brue 08-17-2012 12:14 PM

Quote:

Originally Posted by robpp (Post 906537)
^^^^^^^

I have been taking 3600mg Gabapentin for a few years now......it started to lose its effectiveness and about 2 months ago my MD ADDED 30mg then 60mg Cymbalta.

I can say that the addition of the Cymbalta has definietly improved my symptoms.

I take maybe half that much Gabapentin, usually every 4 hours my feet start stinging again, and it provides relief from that. The pain in my feet extends beyond that, though, and I have to decide how much tramadol or hydrocodone I need in order to get through the day. Usually one or two tramadol. I almost never do the hydrocodone except at night. When I initially started taking Gabapentin, I thought it didn't work either because it's not a traditional pain killer, it blocks the messages when the nerves fire and that seems to be where it ends in its effectiveness.

I started 'juicing' - you know, putting a bunch of fruit and vegetables in a machine and grinding it into a drink. I do the Jack Lalane recipe - celery, kale, spinach, green apples, ginger root. Tastes fine, and I am losing some weight, so its less strain on my feet. As far as making them feel better, I haven't noticed any difference, but like I said, you definitely can lose weight. Brue

chaos 08-17-2012 04:26 PM

1. The injury was caused by a chemical burn (see an old post for more info, I can't re-explain it right now). My "pain" is more like a tens unit is taped to my feet, achy pain going up legs. Not burning pain. Sometimes even wet feeling.
2. I already eat a pretty balanced diet, and stay aware of carbs (not away completely, but I know what's good and bad carbs). Better than the regular (fat) American. I am very aware of Diabetes types I and II and I DO NOT HAVE EITHER. I seriously have no doubts about this. If that means getting a thing to test my blood and record it so I can show the doc, then maybe I need to do that.
3. My insurance only covers generic meds right now, until I can switch it on Nov 1. And I can't afford to pay out of pocket.

Dr. Smith 08-17-2012 09:03 PM

Quote:

Originally Posted by chaos (Post 906623)
I am very aware of Diabetes types I and II and I DO NOT HAVE EITHER. I seriously have no doubts about this.

I believe you, and I wasn't suggesting that you were diabetic. I'm just saying that, even though I and several other people on this group are also not diabetic, for some reason eating as if we were helps the symptoms. It's something relatively easy, inexpensive and harmless to try. If after a couple of months it doesn't help, then there's no harm done.

Now that you mention it, I do recall the other post about your burned foot. Thanks.

Cymbalta and Lovaza are brand name prescription meds, however there are other SNRIs (than Cymbalta) that are available generically. Omega 3 fatty acids (Lovasa) can also be gotten in OTC supplements. None of the supplements mentioned are prescription meds. If you have burning pain from PN, I think the stabilized R-Lipoic acid is worth a try. If it doesn't work within 4-8 weeks, it likely won't, and again, no harm done.

Just trying to help.

Doc

Stacy2012 08-18-2012 12:10 AM

Buying my own diabetes monitor is the only thing that proved to me that I am pre-diabetic. If I listened to the dr I still wouldnt even know it. My PN is still bad but the pain is less just in the couple weeks I have changed my diet. Im sure the dr would look at my numbers and still say I am not diabetic but my research shows any consistant spikes that continues can cause PN.

Just thought I would share my experience, as it helps to hear everyones testimony.


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