I’ve been taking a relatively low-dose of gapentin for a about a year and my pain doctor is trying to increase slowly. I take 300mg at night and 100mg twice a day, but my doc says I’m nowhere near a therapeutic dose. He wants to increase to at least 1800mg. The problem is that I don’t tolerate it very well. It makes me very sleepy and groggy. Due to my career, I cannot be groggy and do the type of work I do. It also seems to cause swelling in my hands and feet, and I think it’s contributing to weight gain.
My pain doc has also mentioned SNRI’s like Effexor and Cymbalta. However, he didn’t want to add another medication that causes drowsiness. I’m at a point where I’m wondering if I should go off of the gaba and try something different. If I can’t tolerate 500mg of gaba, how will I ever get to 1800mg without awful side effects?
Can anyone share their experiences with Effexor or Cymbalta? Have these been more helpful to anyone than gaba??? Any thoughts/suggestions would be greatly appreciated.
Just to say you are not alone having problems with Gabapentin lots of people do. I haven’t tried Effexor or Cymbalta. I think a lot depends upon the cause of your EM what medication works. For me it was rheumatoid vasculitis and once that was treated with Rituximab infusions the difference was incredible. I no longer have to use ice packs wrapped in a towel, which was the only thing that helped. There are quite a few causes including primary if it isn’t primary then treat the cause rather than the symptoms as long as the cause is treatable.
Thanks for the reassurance. Unfortunately, my docs haven’t figured out what is causing my EM. After my EM began, I found out is likely I have SFN, but we think I had the EM first. I don’t think mine is primary, although I haven’t had genetic testing. My rheumy said it could be a gene mutation, though, but I still suspect it is secondary to an autoimmune disease. Hopefully, one of my 4 specialists will eventually figure it out lol
As you say it’s likely you have SFN I assume you haven’t been tested for it? It took me years to find out the real cause of my EM. First they said it was nerve damage as at the time it was thought I was diabetic. I wasn’t diabetic it was my adrenal gland had a tumour on it and that was over producing glucose once removed my glucose was normal. I had the normal nerve test and it didn’t show anything. It was a registrar neurologist and he said I should be tested for SFN, but the consultant said it wasn’t necessary.
They dismissed the cause as nerve damage still no mention of EM though. The next thing they said was cellulitis, loads of antibiotics, but just the same.
Then it was poor circulation and also that was causing my ulcers. So they put balloons in my legs, still not difference, but they then after showing doctors these pages one agreed it could be that, but they still insisted it was poor circulation even thought the dopler test showed my main arteries were fine.
It was only last year that they found out I had rheumatoid vasculitis and at long last things changed.
I think a lot of it is purely guesswork. It was after they had a meeting of all the specialists I had seen that they came up with the real cause. Any chance of that happening for you?
A meeting of all the specialists would be amazing, but unlikely I think. In US, doctor’s are very siloed. I will say a few of them have communicated with my GP but not with each other. I haven’t seen my neurologist yet (see her in June) but I had QSART testing done, which indicated SFN in 3 of the sites tested.
My hematologist diagnosed me, and the rest have been treating it, although they say it doesn’t present as “text book” EM. I agree for sure that it is definitely a guessing game
So happy they finally figured out what was causing your EM but so sorry you had to suffer so much before they did
I just resumed taking 300 mg of Gabapentin at bedtime. At one time I was on 900 mg and had “brain fog” and excessiveness sleepiness. The idea is to take the minimum dose that gets me to a pain level that I can tolerate and not have serious side effects. We’ll see.
I tried Cymbalta and the side effects for me were horrible. But that doesn’t mean you should not try it, it may work for you.
It’s a miracle that they had the meeting here never known it happen before. As for being in touch with my GP that last vascular surgeon has not responded to my GP despite numerous phone calls and emails since early March.
Sorry I don’t know what QUART testing is! Looked it up on Google and couldn’t really find anything definite.
kcmiltong is correct not everybody responds to Gabapentin in a bad way. I did due to interaction with another drug I was taking.
have you tried NORVASC? Helps me during day. Night time body burning no help on Gabaepntin or anything. Effexor was on my list but kidney disease and do not want to add more meds
I’m sorry to hear you are having problems. I was initially put on Gabapentin. It helped with the pins and needles pain, but like you, I did not tolerate it well. I was still having burning and swelling. I had the doctor ween me off of it. I took Cymbalta, but it made me severely depressed (interesting, as it is an anti-depressant!). At the present time, I don’t take anything. Summer is coming (I live in Las Vegas) and I am here (again) looking to see if anything is helpful.
Gabapentin was a nightmare for me. Cymbalta didn’t work out for me but for different reasons. Ultimately its side effects were greater than the benefits, but I did sense some numbing so I could see how it would work for some people.
If after a year you are still only 28% of the way towards an effective therapeutic dose due to adverse side effects, I think it’s unlikely you’ll ever reach the therapeutic dosage. Your physician could try something else and always come back to Gabapentin if nothing else works.
I tried Gabapentin and after a week I had unexplained fever, chills, and body aches. Didn’t know of any infections I was fighting and then I looked at the side effects of Gabapentin that said “fever, chills, and muscles aches, susceptibility to infections” and i said “NOPE, not taking this anymore. DONE.” lol I take it every once in a while but I limit it to 3 days in a row maximum.
I am on gabapentin 300 mg in the morning, 600 mg in the afternoon, and 600mg at night. I would have relief every time my dose was raised and then I would flare up all day again. Cymbalta XR 30mg was added and for 3 weeks I was so tired but I felt better. I think cymbalta has helped me the most and I am going to go up on my dose, I am no longer groggy from any of the meds. But I take hydroxyzine for itching and that makes me tired. I want to try Lyrica but I have to be at the max dose of gabapentin first and not having relief because of my insurance.
I couldn’t imagine living in Vegas with what I am going through now with em! I lived there for a year without em and I was pregnant throughout the summer and I would say that was a piece of cake compared to having em in Washington, do you have it on your arms or just feet? It was 95 this past weekend and I went on a errand and it sent my arms into a huge flare up! I lay my arm against the cool wall to sleep. I am thankful that I have central AC, I would be in hell without it
I have Erythromelalgia and Peripheral Neuropathy in my feet (Mayo Clinic, Rochester) . Gabapentin 300/600/900. 900 helped with the pain and sleep but groggy the next day. Cymbalta had too many side effects. Am now using 25 mg Amitriptyline, get 8 hours sleep and no pain. Tried 50/75 Amitriptyline but had side effects.
Every morning I use a compounded cream on my feet, it helps with the pain for 6 - 10 hours. If needed I do a second application. Cream ingredients are: