My doctor increased my Gabapentin from 1200 mg per day to 1800 mg per day and my pain increased. Has anyone had this happen? He wants me to wean off the Gabapentin by 300 mg per day and then will start me on Tegretol once I am off the Gabapentin. Has anyone weaned off Gabapentin that quickly?
Hi Pacey
I used to up and down the gabapentin.Never completely off -but I would take off 300 mg at a time.This is when I was just using it for hot flashes.
good luck with the tegretol.
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Hi Pacey and Ellen
I was on a tremendous amount of gabapentin and dr added Tegratol. The dr in the hospital ( I was out of town) and my NA dropped sooo low. Anyway he didn’t believe me that I had that big of a dose of gab. Until my kids showed him the bottle. He called my neurologist and took me down n off in about a week to two weeks. Which I thought was fast. The Tegratol is what caused the sodium to drop. I was a crazy loon on gab. The reason neurologist kept upping gab. Was increased pain. I so want your pain to be under control. I hate this for you and everone. I wish we could just all sit and talk comfort whatever together. We all need people in the physical form. But I’m thankful for this wonderful site to talk. My face hurts right now and I have to close my eyes. I’ll think of Alaska Ellen. Kristi
Hi ellen5,
Thanks for the information and for you kind thought about the Tegretol. I really would like to be off all meds. I’m curious about how I will feel when I’m very low on the Gabapentin.
Hi Kirsti3,
I’m so sorry that you had so much trouble with your meds. Also, thank you for the information about your experience with Tegratol. I really don’t want to try it but from reading the posts here it probably is the next best step.
I agree about being thankful for this forum. And yes it would be great if we could get together face to face.
I hope your face is feeling better now.
Hi Pacey, I’ve been told and read that Tegretol is the “first line” or gold standard treatment for Trigeminal neuralgia. I started it but freaked out due to the side effects, which for me was extreme drowsiness and difficulty walking. I will say now that I totally regret not sticking with it through the side effects. The Trileptal, which is in the same family as Tegretol, had many of the same side effects too, and it didn’t totally cure my TN symptoms. I wish I would have stuck with Tegretol as they were ramping me up so I could try the most popular and successful treatment first, rather than have given up. Don’t get me wrong, trileptal is helping me A LOT!! but not all the way. It took two months to get on it and I would never go through that again. Gabapentin helps me with break through pain but I would never rely on it for the main treatment for TN, I believe strongly that the seizure meds like Tegretol are the way to go. Gabapentin also had lots of side effects at high doses for me as well, so more than three a day and I get too drowsy to think, drive and function day to day. I take it along with the Trileptal when I need it for extra if I start to have more pain or a shock comes through. Its my crutch medication. That’s my experience! I wish you LOTS of luck in this journey and finding the right treatment for you. Having a good relationship with your neurologist is key.
Hi Kristi
I so hope your pain to just disappear.That would be o wonderful.To wake up,have a coffee ,some cereal and read a bit.And wonder what is wrong.A miracle.
Hello
I weaned down to to 600mgs from a whopping 3000mgs with the help of Tegritol. Please follow close doctor’s instructions. Its critical because of thepotential for seizures. I had periodic sweats and diarrhea for a few days. I find neurotin very addictive. Also it has a short half life.
shoshana,
Thanks so much for the information. I’m nervous about Tegretol because of the potential side effects. I see my doctor on Tuesday and will discuss it with him. The higher dose of Gabapentin definitely did not work and I had too many side effects.
Edster,
Thank you for you post. I decided to do a slower wean off the Gabapentin. I’m afraid to do it as fast as my doctor wanted because of possible withdrawal symptoms. I was at 1800 mg per day and am now at 1200 mg per day and will stay at that for awhile before I drop another 300 mg. My doctor won’t put me on Tegretol until I’m at 300 mg per day on Gabapentin but I can wait. I just started using generic Voltaren Gel on my face and it hasn’t taken the pain away but has made it somewhat bearable. Otherwise I would probably be in more of a rush to get off the Gabapentin. Thank you again for the information.
Tapering is more of an art than a science. You won’t find a lot of studies on how to do it. Generally, the rule of thumb is that any drug that needs to be started slowly also should be stopped slowly. I was at 900mg of gabapentin and weaned myself off over a week, but I wasn’t on the drug for very long (only about a month), and didn’t have any problems. That was considered a very fast taper. A conservative approach is to decrease the dose by 25% every 1-2 weeks while monitoring for withdrawal/worsened symptoms. With a drug like gabapentin a faster taper is probably OK…but everyone is different.
Btw tegretol has been a godsend for me. I take it with baclofen and I barely notice the pain now.
Hi Toothache,
Thanks for the information. I’m sensitive to most meds so I will taper Gabapentin slower than my doctor suggested. I don’t think he will have a problem with it, he just won’t start me on the Tegretol until I am off the Gabapentin. I’m glad that the Tegretol and Baclofen are working so well for you.
Good evening Pacey and everyone on this thread
I hope all is well with your tapering off the drug.
I started baclofen last week and have had 2 flares. He upped the dose to a full 10 mg. I get drowsy driving so I try to be cautious of that. Otherwise I think it is helping a bit. Next week is 1 1/2 pill. I’m so sensitive I have to be so careful. The weather is bothering me today. It’s cold windy and rainy. But the good thing is… it’s good for the wheat starting to grow. Lol. Have to have a positive.
I hope everyone is at a decent pain level tonight and rests well. Goodnight all. Kristi
Hi Kristi3,
Thank you for checking in. I’m at 900 mg of Gabapentin. I think the Voltaren Gel is helping. I see my doctor tomorrow. I don’t think he will start me on the Tegretol because I haven’t dropped to 300 mg of the Gabapentin. I can wait. I worry about starting a new drug.
I’m glad the Baclofen is helping you.
I stopped taking about 900mg a day, cold turkey…as they say. I had increased from 300 a day in an attempt to alleviate the pain. My left jaw, cheek, tongue root, all that every person with TN has to endure. The Gabapentin caused me to have facial edema and it did not help with the pain. So I quit taking it.
It has been over a year and a half since I began to rely exclusively on a high strain of CBD oil or that strain of cannabis with a high CBD content to manage my TN pain. I have a medical marijuana card for my state.
Unfortunately, or perhaps more, fortunately I made this decision without the consultation or care of my neurologist Other than making his diagnosis over two years ago and prescribing the pharmaceuticals and the alternative surgeries, I have found him to be closed - minded and ancient in his beliefs as to curing or listening to alternative treatments for our “Tic Delaroux.” .
I have previously commented here as to my personal success with Legalized Cannabis as a treatment, but I do not advocated its usage for anyone but myself. I’ve tried other, but nothing else has given me the relief to endure the 24/7 pain of TN.
Keep your glass half full and good luck to you!
Hi coachjt,
Thanks for responding. I stopped the Tegretol and will stay on and up the Gabapentin. The Tegretol was making me very nauseous. I’m hoping the higher dose of Gabapentin will work.
I’m glad you found something that works for you.
Hi Pacey,
Why do you want to stay on the Gabapentin . I thought you had more pain when you went from 1200 mg per day to 1800 mg/day .
So I was under the impression Gabapentin was not really working ?
My neurologist wants me to slowly stop Tegetrol and hopefully things will go well for some time .
When I would have the next bad episode the doctor wants me to use Gabapentin .
I would prefer using Tegetrol again - or even not stopping it at all .
Good luck with the Gabapentin .
omieke,
I’m having a really hard time with this and realized I’m not sure what to do. My doctor wants me to try Tripetal. I’ve read there are less side effects with Tripetal than Tegretol so I will keep weaning off the Gabapentin and try the Tripetal. I was very nauseous on the Tegretol even though I have an anti nausea med. It seems like the doctors try different meds looking for one that will work. Why is your doctor wanting you to stop the Tegretrol? The Gabapentin at 1200 mg worked for me for 3 years then stopped working so now I’m searching for something else.
Thanks for responding.
Hi
I am in Canada and have a medical marijuana card and I have found the CBD oil to not be very effective for me.
I have found the high THC oils to be good for night time.
But we all are different.I am so glad that the CBD oil works for you.How much does it cost?right now-if I could find something as healthful as CBD oil to dampen the pain any amount of money would be worth it.and you are building up your body.Yay