I'm curious what meds we're all taking and what dosages, how they're working etc etc. If you take the time to respond with some specifics in the format I'm using I think we could all get a better idea of the lay of the land:
Med: Trileptal
Dose: 1200mg (600mg twice a day)
Side effects: I seem to have lost much detail recall. I can't remember which actors were in which movies and such. I forget where I put my keys. I forget stuff I went to the store for etc. I never had that problem before the meds.
Efficacy: For the most part this regimen works pretty well to keep the pain in check, or at least manageable. Lately however, the pain has shifted and the meds are only working for about half as long as they usually do.
Next Step: Considering what a med could be. Trileptal has worked well for a long time but I'm told I've maxed out my dose and may want to try neurontin. Everything I've read about neurontin scares me that I'll lose even more functionality.
Thanks for any feedback and additions to this thread.
Side effects: I have an occasional memory blank, like I can't think of the correct word, or I forget simple things for a bit. For example, I know all the Disney princess songs backwards and forwards. But for the life of me the other night, I could not remember Cinderella's "A dream is a wish your heart makes...." This is only occasional though and not enough to make me aggravated.
Supplements: Multivitamin
Med: Oxycodone
Dose: 5mg (1-2 pills every 6 hours as needed)
Side effects: insomnia.
Efficacy: I just increased to 2700 mg's so I can't really tell you if it is adequately working. I was at 1800 and there was way too much breakthrough pain. I was also using vicodin 10mg, 2 pills every 4 hours as needed, however, that was just not working enough. The oxy works fairly well in controlling the pain. It takes about 45 minutes to work and pulls the pain from 7-8 to 1-3 depending. However, it does not break the pain completely. It's there, but dull. However, this is better than what I have been dealing with.
This is a progressive disease and meds can stop working like they used to. I went on three CRAZY meds within a year and could not go to work, spell, remember, awful. So finding out that with TN 1, that an MVD is a viable proceedure especially in the first perhaps 7 years, I went for that.
There is another brand new thread of postings here asking the same question and has more replies
I also used lidocaine patches to help with the pain when lowering my trileptal for surgery
Side Effects: Increasingly cleared thyroid medication (levoxyl) from my system so I was tired all the time and all my hypothyroid symptoms returned after years solved. Endocrinologist increased the levoxyl which made me manic with energy crashes.
Efficacy: Worked well for pain except for levoxyl interaction.
Next step: Neurologist switched me to trileptal 150 mg..continued below
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Med: Trileptal
Dosage: 900 mg (two 150 mg three times daily)
Side Effects: Good for non-interference with thyroid meds, hypothyroid symptoms gone with lower dosage of levoxyl, but it's barely working for TN pain.Lots of breakthrough pain.
Trileptal 2400 mg daily. Memory recall for me is also a b***h !! UGH. I hate it. However, it seems to ward off the attacks, for the most part, and I am able to work in a HIGH STRESS job even at this dose. Seems to be the best and onlly choice for me
We should enclude our first episode date. Mine was Dec. 10 2011. I was diagnosed with TN on Dec. 14 th 2011.
I am on carbamazepine. I started at 200mg 3x a day and as of yesterday I am now at 1000mg. I am so hopeful!
I am pretty much pain free. I also take an occasional 325mg asprin. I guess it helps with inflamatory issues. I too have memory issues but I try to laugh unless it involves cooking. Not funny! I don't take vitamins but try to eat foods high in Omega fatty acids, potassium etc.
Great topic Todd. Blessings
scubachic said:
Trileptal 2400 mg daily. Memory recall for me is also a b***h !! UGH. I hate it. However, it seems to ward off the attacks, for the most part, and I am able to work in a HIGH STRESS job even at this dose. Seems to be the best and onlly choice for me :)
I'm on Tegretol 1200mg (200 mg 3 x a day), Cymbalta 60mg, and Neurotin 900mg (300mg 3 x a day), Vicodin 750 mg as needed. Side effects - to many to list. I'm wacko!
I was diagnoised Nov. 2011 My Doctor keeps telling me to hang in there he'll figure it out. While I'm in pain every day. The only time I am free of pain is while I am asleep. I was in so much pain the other day I thought I was going to die. I am hopeful that my doctor will find a level of meds that will let me be at a pain level that I feel like I can function like a normal person.
I’ve just been diagnosed so just been put on Carbagen. I take 200mg twice a day, but on a bad day the doctor said I can have an extra dose. He also said the dose may go up.
I’m really tired, but that could be because I’ve not slept with the pain. The worrying thing I’d my memory. I keep forgetting key words and such. I say this is worrying because I am training to be a maths teacher, so I need my wits about me. I’m just learning the maths at the moment, but from september when the teaching part begins, it’s an intense and exhausting year at the best of times. I hope it will get better.
