I’ve been taking 3600/ day: 4x900 since end of January. Took a year to get up to that regimen. Felt like I was walking underwater a lot of the time. Finally around the end of May it was like I finally came out of the “underwater” although don’t ask me to do anything in a hurry!
I lost over 20 pounds when TN got really bad a couple of years ago. Total loss of appetite. Then when I went on the 3,600 I gained some of it back, partly because I felt quite hungry but basically because I could eat more when the med was working. I have not had the weight gain so many have experienced. This may also be because I live on a small island without a store so if I don’t buy “bad” food on my weekly grocery run to town I pretty much don’t have opportunity to overgraze…
Like Honeybumps said, you have to be dead on with gabapentin timing. I am also going to go for the MVD.
Keep heart everyone.
Bellalarke
I'm on 2400 mg. a day and 50 mg. of Baclofen and together they work great for me. I don't seen many side effects ... I feel a little lightheaded at times but that's about it. :)
I take three hundred, mg before I go to bed, then as soon as I can, I take one hundred in the morning.
Then a hundred at noon, and one at dinnertime.
I take two hundred during the day, if I am going to be more active than usual, or have to be in a car for long
periods. I can take one anytime I have break though pain. I seem to be senstive to this medication in a good way, as
am hopeful it will last me several years.
I do have an attention problem, but its more related to thyroid cancer, than anything else. I feel I am actually a little better on the meds, than off.
Thank you all so very much for your replies. I am up too 600mg 5 times a day. That is 3000mg. I need more for the pain, but how high can you go on the mg to be safe?
3200 is what I have read. My doctor wants to switch me to Tegretol instead.
me said:
Thank you all so very much for your replies. I am up too 600mg 5 times a day. That is 3000mg. I need more for the pain, but how high can you go on the mg to be safe?
Number I’m told is 3,600 ( and that’s what I needed to get to to get relief). I’ve heard that it is not unheard of for 4,500 in some individuals. It depends on what you can handle. I also boost with 75 mg of tramadol at about 12:30 pm to get over the hump of the day. If I’m out and around traveling, I take another 75 mg around 5:30.
Do your due diligence on neurontin. Gabapentin is the forerunner of Lyrica. I was diagnosed 10 years ago and there aren't many medications that I haven't tried. I kept track until I reached the 25th drug prescribed for me and I quit counting. My experience with gabapentin was alright, but nothing to get excited about. If you have insurance that will cover it, ask your doc about Lyrica and if your doc is willing, give it 3 months and see how it works for you. I am fortunate enough to have a doc that truly understands TN and what it can do to a person. He and I experimented with the old school meds prescribed for TN and nothing ever came close to relieving my pain...and then came Lyrica. When I added Lyrica to my regimen I could feel a difference. I have titrated (with Dr. approval) my Lyrica up to 1500 mg a day. A massive dose by some standards, but it has made a tremendous difference to me.
Thanks for the information; she has been prescribed Lyrica and will be soon on it...not quite as much as 1500mg, but we can always go higher.
I have the same thing. Meds help the pain but I forget words when I am trying to think of something and its so frustrating, also cant shake a few pounds I gained.
lex12000 said:
Gabapentin was initially effective for me with minimal side effects. I found myself a little more nervous and high strung in the mornings. Shaky hands. I could have lived with these, but it was only effective for about two months. I am now on a combination of Gabapentin and Oxycarbzepine. Effective for the pain, but serious memory issues and extreme loss of focus.
Hi there, I have been prescribed the Gabapentin but have not taken it yet. It's been sitting in my drawer for over a month I'm sure and I've been trying to get over the anxiety of taking it. I'm so weary of the side effects and reading the replies from your post didn't help that very much...Have you taken yours yet? If so what do you think about it? I know your post is older but I thought I'd ask.
Thanks!
Just start by taking a small dose at night while you sleep.
I doubt you will notice it unless you take about 300 mg. Sometimes a little sleepy in the morning.
One hundreds till you get used to those, about every six hours. It really helps, and I feel totally normal on it now.
I take one hundreds every six hours during the day and then a bigger 300 dose when I go to bed.
works like a charm for me.
After taking several meds that ripped my stomach apart, my doc wanted to trynGabapentin, but hesitated due to the state my stomach was in. He also wanted to give me a numbing cream to put on my face. What we did was add the Gabapentin into that Cream! So, I do take G., but it is inside my compounded cream and I rub it on my face (right side, where my crazy deep pain is, following crazy horrible dental work). My side effects were minimal…a tiny bit of weight gain and a little bit of dizziness for one or two days. I feel blessed, as along with taking Desipramine by mouth, I am getting improvement. Thank God…the pain is/was horrendous.
I have heard that Gabapentin is helpful for ATN.
On my first visit to a neurologist he started me on Gabapentin. I don't remember the dose. It didn't help me at all. I wasn't too keen on that neurologist so I switched. The second one (I am still seeing him) stated that Gabapentin was not his first choice of medication for TN. He started me on Triliptol. I had only been the Gabapentin for a few weeks and was concerned about "comming off it it" since the insert stated to taper off. Anyway, I followed his instructions on comming of the medication. The last day I took it, and before I started the new medication I started itching. I'm not talking itching, I'm talking ITCHING! I had no random patter to this itching, first my right arm then my left leg, then my head and so on. I was even scratching the bottom of my feet (I am very tickleish so this amazed me). This went on for 3 days. I first called the pharmacist at a 24 hour pharmacy and she said it was probably some sort of neurological "issue". I took enough Benadryl to sedate a horse but kept itching. My doctor said it much have been some weird withdrawl. He appoligized over and over . I guess this is a long way of saying if you come off it, beware that it might cause some weird symptoms. I didn't start the Tripliptol for a week after that. Good luck!
I am also on a combination of the Gabapentin and the Oxcarbezepine and while I have some days where the pain is tolerable, I have days like today where I can't function one way or the other! I am also have a medicine reaction that has caused a break out all over my body but I don't know which medicine is causing it. I am scheduled to see a new neurologist on Monday 09.23.2013 and I pray to God that he can give me some kind of relief...this pain is killing me!
Gabapentin helped diagnose my TN. It was the only thing that stopped my severe facial pain.
I had to stop taking it. The side effects were horrible. I couldn’t drive, my speech was slurred and I could not even get a sentence out that made sense. I was also on a low dose - but as a marketing director as my job I could note tally function properly the confusion was so bad. However maybe that was just my crazy body!
I take 600mg 5 times a day. That is 3000mgs. It is not enough! My pain is all day every day! Is there another way I could take this that may help? such as two pills at a time 3 times a day?? Would that be safe?
Since I first responded I was taken off the oxcarbazepine and my Gabapentin increased to 1800mg which is not helping at all! The side effects are crazy…I’m nauseated hands shaking cant concentrate and so very drowsy! Because the pain has gotten worse he wanted to increase it from 1800mg to 3600mg… I told him I can’t do it. Try something different!
I thought about trying Topamax. Have any of you for ATN?
So sorry for all your pain. I get it. I just wanted to say that I could not handle the brain fog and side effects of being on both gabapentin and oxcarbazapine. My neurologist then added 75 mg 3 times a day but decreased the gabapentin to only 300 mg at night. I was still stupid and brain foggy but better. Also pain was a step up better too. I still found it hard to work with the brain fog so finally switched the oxcarbazapine to oxtellar. It’s the same drug only extended release (expensive too). The brain fog was way better and another step up with pain control. It seems the combination is working pretty well as long as I don’t chew to much or get too tired.
It’s something to keep in mind when talking to your doctor. Take good care.
I have the reaching for words issue too. It makes me crazy. Sometimes being able to string words together into a sentence is a real problem.
I'm on 3600mg gabapentin a day as well as 450mg of oxcarbazapine. Since going on such a high dosage of the gabapentin 3 months ago I've gained 15 pounds and I'm starving all the time. However, since well before I hit the max dosage and added the ox I've had vision problems and mental clarity issues. I'm sleepy all the time and often sleep 10+ hours per night.
Mind you, I'm still having breakthrough pain so, although I'm thankful for the relief I do get, I'm wading through all these side effects and still having pain. When I see my neurologist Thursday I'm going to ask him about surgery options. I'm 56 years old and I still need to work. I can't right now (I lost my job as a consequence of making a mistake that I'm 100% sure I wouldn't have made if I was on my game) so something needs to give.