I am having a flare up I am on gabapentin 400mg x3 1200mg a day it usually works for me I called the doctor and my doctor told me I could take an extra 400mg but he said it probably won't help because it is such a strong dose and comein next wenesday for an appt. so what am I supposed to do thr the next 5 days WTF
I do not understan the part about him say if I took 4 x400 mg total 1600mg it would not absorb and would not help me . anyone know what he is talking about or is he another stupid Neurologist there seems to be so many
My neuro has told me the same thing. Your body cannot use more than 1200mgs at a time. He did say I could take 1200mgs more than 4 times a day though. So you absolutely can take more but you need to space it out. Always check with your doc before changing meds though as I can’t know all the specifics of your case. If you are miserable call and beg for an earlier appointment or go to the ER and get some better pain control. If there’s one thing I’ve learned over the past two years its to not suffer needlessly just because one doctor tells me to wait or puts me off.
Hi there. Personally I think if you went up to a higher dosage that it would help you, at least for the next five days until you can get in to see the dr. Has he ever tried to add another drug in combination with the gabapentin? I'm on tegretol in addition to the gabapentin and together they work very well. I think it would be worth a try to increase your gabapentin dosage until you get in to see him and them maybe discuss other options with him. Hope this helps. Laureen
Thank you so much Laureen that helped me a lot maybe his nurse did not relay the message properly I am taking now 500mg x4 per day again than you so much. I am a little scared to take tegretol because of all the side effect and the possible liver damage I took a old hydrocone that I had in the medicine cabinet and it helped for a little while so I could eat I wish the doctor would perscribe them I would really only need to take at least once a day so I could get food and drink down I can drink some with out but eating does not happen with out it I bought some ensure to get me by Hopefully this flare up will either calm down or the increase in meds will work God bless you
HCal said:
My neuro has told me the same thing. Your body cannot use more than 1200mgs at a time. He did say I could take 1200mgs more than 4 times a day though. So you absolutely can take more but you need to space it out. Always check with your doc before changing meds though as I can't know all the specifics of your case. If you are miserable call and beg for an earlier appointment or go to the ER and get some better pain control. If there's one thing I've learned over the past two years its to not suffer needlessly just because one doctor tells me to wait or puts me off.
I understand your hesitant to take tetretol. I have been on it for 5 years. My doctor checks my levels every couple of months. Some people do have horrible side effects from it. My biggest thing was being so tired from it and feeling like I can't always remember things. I was on 1500 mg of it but am now down to 1000mg after having a radiofrequency rhizolysis in March. That procedure has worked wonders for me. It was my second one. I also had a MVD in the past and gamma knife done. The one thing I heard about taking tegretol and gabapentin in combo is that the one blocks a certain type of nerve pain and the other blocks another type and that is why they work well together. You could maybe take the other form of tegretol that is safer. I think it is called trileptal. But please dont' suffer. The one thing I learned is that we have to fight for the best care for ourselves. The doctors don't really totally understand our pain. I hope this is helpful to you. Laureen
I take 900 x 4 and it took going up to that amount to get any real relief. I also take tramadol between does to boost. The tramadol actually gives me more energy too. I need to start it by noonish for it to boost me through the day, otherwise I droop by 2 or 3pm.
Thank You Hav2hope it also helped me also I am just a little scared of tegretol I need to do more research before I go to the doctor on tues about the drug I am going on Vacation on the 19th for a week Do you think if he wants to put me on tegretol I should start it before vacation I am worried either way that my TN is going to runin my vacation
hav2hope said:
I understand your hesitant to take tetretol. I have been on it for 5 years. My doctor checks my levels every couple of months. Some people do have horrible side effects from it. My biggest thing was being so tired from it and feeling like I can't always remember things. I was on 1500 mg of it but am now down to 1000mg after having a radiofrequency rhizolysis in March. That procedure has worked wonders for me. It was my second one. I also had a MVD in the past and gamma knife done. The one thing I heard about taking tegretol and gabapentin in combo is that the one blocks a certain type of nerve pain and the other blocks another type and that is why they work well together. You could maybe take the other form of tegretol that is safer. I think it is called trileptal. But please dont' suffer. The one thing I learned is that we have to fight for the best care for ourselves. The doctors don't really totally understand our pain. I hope this is helpful to you. Laureen
Since you are going on vacation I would probably be hesitant to start a new drug before leaving in case of the side effects. But also you do not want the pain to ruin your vacation. That's a tough decision. I've heard a lot of people say that there were less side effects with the trileptal or oxcarbamazepine. Discuss this with your Doctor.. You're really in a tough situation there with leaving so soon. I wish I had better advice for you.
I was scared to death to take anticonvulsants and my parents were scared of me having it. I didn't like lyrica but tegretol worked for me until I had a bad reaction, throat tried to swell shut, (I tend to leave my doc's confused, it will work great for you, don't be scared!) and the side affects didn't bother me much :) You can ask for lidocaine or compounded cream if you are weary of taking it. Another option is lidocaine patches but they aren't covered by many insurance companies so they are a bit expensive. The cream I have has been a life saver since I can't tolerate the anticonvulants in general.
I have been on gabapentin 300 mg 3 x a day for years, but know people on 600 mg 3 x a day. I am not sure what he is speaking of, but perhaps talking with him would be best. You may have misunderstood, or he may want to try a different drug. Good luck
Hi lizloulou than you for your responce have you tried gapapentin it is supposed to have the least amount of side effects I think the reason we leave our doctors office confused is our doctors are confused LOL sorry about your reacation to tegretol. I am doing better I uped my doses of Gabapentin to 500mg 4 x day it is working pretty good can now eat and drink YAY I will definatly have to ask the doctor for LIdo cream and mouth wash my triger points are in my mouth on the gum line on the TN side
Do you mind me asking you look very young how old are you I am sorry that TN has effected you at such a young age
lizloulou said:
I was scared to death to take anticonvulsants and my parents were scared of me having it. I didn't like lyrica but tegretol worked for me until I had a bad reaction, throat tried to swell shut, (I tend to leave my doc's confused, it will work great for you, don't be scared!) and the side affects didn't bother me much :) You can ask for lidocaine or compounded cream if you are weary of taking it. Another option is lidocaine patches but they aren't covered by many insurance companies so they are a bit expensive. The cream I have has been a life saver since I can't tolerate the anticonvulants in general.
God Bless You you are so young to have TN Have you researched your surgery option so if you ever get to that point you will be ready I may be getting to that point myself Good Luck I hope you can find some relief from the pain of your TN You should not have to worry about Tn at your young age
lizloulou said:
I tried gabapentin but it didn't work after I tried tegretol. I am 20.
I have tried Lyrica before but was unable to tolerate it. I felt "loopy" when I took it and would have like a hangover in the morning if I took it at night. Neurontin is an old drug, inexpensive as a rule as there is a generic and there is not one yet (I dont think) for Lyrica. Neurontin is a safe drug compared to many of the others with much fwewer side effects and is why it is used much more often than any of the other neuroleptic drugs. Also, what works as a dose for one person, may not work for another so there is really no way you can say there is a "set" max dose the body can absorb as we are all different. A250 lb man would usually tolerate a higher dosage than a 110 lb female. Plus, we all metabolize drugs differently and have different reactions to drugs. I have seen people on 600mgs three times a day/1800 total each day and they do not even feel sedated. There is a tolerance with neurontin although not as pronounced as with narcotics etc. When I first started Neurontin 15 years ago, or so, it made me sleep like a rock for about a month and I liked that, but as I became acclimated to the drug, it no longer had that effect on me. To this day, I do not take all 3 doses of neurontin everyday, as I am a nurse and drive all day for work, and afraid of getting sleepy as fatigue is already an issue for me. I always take 300mgs at night and when I am in a lot of pain, I take 600mgs at night. When I am in a "pain crisis" i will take 300mgs three times a day if I am not working that day. I do end up missing work due to this crud ): but I try to hang in there.