HI,
Yesterday I was rushed to the ER because I was sick to my stomach, my right foot was tingling and my right leg and arm felt heavy; my speech was slurred and my smile was off (they were worried I was having a mini stroke - [my grandmother had many mini strokes].) After a scary morning, EKG, chest xray, CAT scan they determine that it is just my medicine. I am advised to continue taking the meds and my body will adapt. I am tired and foggy and my right arm is heavy today. HOW LONG DOES IT TAKE? The good news is that the Gabapentin is really helping with my TN - HURRAY. Any ideas when I will feel relatively normal again?
I take tegretal 1200mg/day and gabapentin 300mg at night. I still am having days of pain. Foggy and very tired also.
Jackie said:
So sorry to hear that the Gabapentin is causing you so many problems. For me it was the perfect . No upset stomach, slept v well at night and it stopped the pain entirely, however it stopped working!!! Dreadful that it is having such an effect on you. I feel similar on Tegretol, I just hate it. I have had an area on my bottom lip that just could not be touched the pain was so bad, so no it cannot be that unusual. It took me 4 weeks to feel myself on Tegretol. I hope it is quicker for you. Jackie
Those side effects sound scary. My neurologist wants me to begin neurontin.
Sabrina, did you have memory problems and dizziness on a lower dose also? I just don’t want to feel the way I did on tegretol:(
Good luck Jackie. I hope you adjust quickly and continue to be pain free.
I guess each person is different as each case of TN. I had only a little side effect of Gabapentin. I take 1800mg daily along with 600mg carbamazepine and 300mg of OXcarbazepine. Dizziness and not being able to work out suck.
Hopefully I can begin to reduce doses soon since MVD.
Hey Betsy,
I’m so sorry to hear that you’re having problems with this, it took a while for me to get used to it, my speech was scuppered and my balance, and for a while I thought it was great, it really took the edge off my GN, however if my dose changed in the slightest, I became totally unstable, I was having blanks and all sorts of nasty things happening, I was having awful ATN, which we believed to be a natural progression of my problem, the sore-er I became the more I took, turns out it was the drug combination itself that was giving me the problem but we didn’t find that out till later.
When I stopped taking the gaba- because of the blanks and nasties, I was tirating off it and up onto lyrica, and that was a very bad time for me, not due to the pain but the gaba change over left me suicidal, completely suicidal, I was having panic attacks, sobbing unsolably, all sorts, but while I was on it, and on an even dose it was ok and really helped the actual neuralgia pain for a while, but the side effects were horrendous for me.
I’m not saying this to scare or put the horrors into you or anything, but just to say that it’s not always the wonder drug, and that the side effects aren’t worth it for everyone, so if you find that you can not tollerate it then, shift off it and try something else, because for me it nearly ended very badly.
I really hope you find something that works for you soon, all my love and best wishes for you finding relief
Gracie x x x
How did you all feel when you started on the lowest amount of gab.? My doctor wants me to take the lowest dose at night. I’m scared though because when I tried it before (I had a lot of tegretol in my system still) I felt awful. I’m just wondering if it would be better with all the tegretol out of my system now. I guess the only way I will know is to give it a try. I’m just scared…
How are you now Betsy?
Grace Mackay said:
Hey Betsy,
I’m so sorry to hear that you’re having problems with this, it took a while for me to get used to it, my speech was scuppered and my balance, and for a while I thought it was great, it really took the edge off my GN, however if my dose changed in the slightest, I became totally unstable, I was having blanks and all sorts of nasty things happening, I was having awful ATN, which we believed to be a natural progression of my problem, the sore-er I became the more I took, turns out it was the drug combination itself that was giving me the problem but we didn’t find that out till later.
When I stopped taking the gaba- because of the blanks and nasties, I was tirating off it and up onto lyrica, and that was a very bad time for me, not due to the pain but the gaba change over left me suicidal, completely suicidal, I was having panic attacks, sobbing unsolably, all sorts, but while I was on it, and on an even dose it was ok and really helped the actual neuralgia pain for a while, but the side effects were horrendous for me.
I’m not saying this to scare or put the horrors into you or anything, but just to say that it’s not always the wonder drug, and that the side effects aren’t worth it for everyone, so if you find that you can not tollerate it then, shift off it and try something else, because for me it nearly ended very badly.
I really hope you find something that works for you soon, all my love and best wishes for you finding relief
Gracie x x x
Jamie Leigh,
It’s kind of difficult to say because I was on the tegs when I started it, and in the early days I didn’t have too many problems, just the usual, speech, balance, vision, you know, the little things! It did settle though, for a while at least, and at one stage, I did try and stop the tegs and go with gaba only, I can’t remember the specifics now, what with tegretol brain, but whatever it was that happened then, it didn’t work for me on its own so I had it as part of a cocktail.
I found when it was a constant level it was okay for me, where things got bad was if I was having a bad day with the atn I would take an extra one, like I would the carbamazapine to tide me over, and that was really a bad idea, the gaba levels had to be perfectly constant for me or I began to loose the plot, but that was just my experience of it, everyone’s different!
Much love
Gracie x x x
jamie leigh said:
How did you all feel when you started on the lowest amount of gab.? My doctor wants me to take the lowest dose at night. I’m scared though because when I tried it before (I had a lot of tegretol in my system still) I felt awful. I’m just wondering if it would be better with all the tegretol out of my system now. I guess the only way I will know is to give it a try. I’m just scared…
How are you now Betsy?
Grace Mackay said:
Hey Betsy,
I’m so sorry to hear that you’re having problems with this, it took a while for me to get used to it, my speech was scuppered and my balance, and for a while I thought it was great, it really took the edge off my GN, however if my dose changed in the slightest, I became totally unstable, I was having blanks and all sorts of nasty things happening, I was having awful ATN, which we believed to be a natural progression of my problem, the sore-er I became the more I took, turns out it was the drug combination itself that was giving me the problem but we didn’t find that out till later.
When I stopped taking the gaba- because of the blanks and nasties, I was tirating off it and up onto lyrica, and that was a very bad time for me, not due to the pain but the gaba change over left me suicidal, completely suicidal, I was having panic attacks, sobbing unsolably, all sorts, but while I was on it, and on an even dose it was ok and really helped the actual neuralgia pain for a while, but the side effects were horrendous for me.
I’m not saying this to scare or put the horrors into you or anything, but just to say that it’s not always the wonder drug, and that the side effects aren’t worth it for everyone, so if you find that you can not tollerate it then, shift off it and try something else, because for me it nearly ended very badly.
I really hope you find something that works for you soon, all my love and best wishes for you finding relief
Gracie x x x
What drug interaction did you have? I just increased my tegretol and I take neurotin at night along with Wellburtrin(antidepressant). I noticed my problems getting worse when I started the neurotin at night. Is that because I am not talking it all day? My pain is terrible right now. I am not eating or drinking much at all, it bothers my teeth. Barely made it thru work last night. My neuro. said he might put me on neurotrin during the day if my problems don’t get better. I am sick of all the side effects with hardly any pain relief! thanks.
Grace Mackay said:
Hey Betsy,
I’m so sorry to hear that you’re having problems with this, it took a while for me to get used to it, my speech was scuppered and my balance, and for a while I thought it was great, it really took the edge off my GN, however if my dose changed in the slightest, I became totally unstable, I was having blanks and all sorts of nasty things happening, I was having awful ATN, which we believed to be a natural progression of my problem, the sore-er I became the more I took, turns out it was the drug combination itself that was giving me the problem but we didn’t find that out till later.
When I stopped taking the gaba- because of the blanks and nasties, I was tirating off it and up onto lyrica, and that was a very bad time for me, not due to the pain but the gaba change over left me suicidal, completely suicidal, I was having panic attacks, sobbing unsolably, all sorts, but while I was on it, and on an even dose it was ok and really helped the actual neuralgia pain for a while, but the side effects were horrendous for me.
I’m not saying this to scare or put the horrors into you or anything, but just to say that it’s not always the wonder drug, and that the side effects aren’t worth it for everyone, so if you find that you can not tollerate it then, shift off it and try something else, because for me it nearly ended very badly.
I really hope you find something that works for you soon, all my love and best wishes for you finding relief
Gracie x x x
Hi Jamie,
I seem to be tolerating the side effects much better now but the gabapentin doesn’t take all the pain away nor does it stop the stabs of pain that I now get on the left side as well as the right. I have a call in to my neruo to see about upping or changing or adding to my meds but I am apreshensive about that because right now I can work without too much difficulty and I can even work my night time job some. I am thinking about just waiting until the 15th when I see the surgeon to adjust my meds. It is funny b/c I had a really good morning yesterday - went for a walk, worked in the yard some, scrubbed the stove but yesterday late afternoon I was miserable. I only have Loritab for pain and that doesn’t help much at all. The only thing that helps is sleep… that is the only time that I am pain free.
jamie leigh said:
How did you all feel when you started on the lowest amount of gab.? My doctor wants me to take the lowest dose at night. I’m scared though because when I tried it before (I had a lot of tegretol in my system still) I felt awful. I’m just wondering if it would be better with all the tegretol out of my system now. I guess the only way I will know is to give it a try. I’m just scared…
How are you now Betsy?
Grace Mackay said:
Hey Betsy,
I’m so sorry to hear that you’re having problems with this, it took a while for me to get used to it, my speech was scuppered and my balance, and for a while I thought it was great, it really took the edge off my GN, however if my dose changed in the slightest, I became totally unstable, I was having blanks and all sorts of nasty things happening, I was having awful ATN, which we believed to be a natural progression of my problem, the sore-er I became the more I took, turns out it was the drug combination itself that was giving me the problem but we didn’t find that out till later.
When I stopped taking the gaba- because of the blanks and nasties, I was tirating off it and up onto lyrica, and that was a very bad time for me, not due to the pain but the gaba change over left me suicidal, completely suicidal, I was having panic attacks, sobbing unsolably, all sorts, but while I was on it, and on an even dose it was ok and really helped the actual neuralgia pain for a while, but the side effects were horrendous for me.
I’m not saying this to scare or put the horrors into you or anything, but just to say that it’s not always the wonder drug, and that the side effects aren’t worth it for everyone, so if you find that you can not tollerate it then, shift off it and try something else, because for me it nearly ended very badly.
I really hope you find something that works for you soon, all my love and best wishes for you finding relief
Gracie x x x