I do not know who repliled to me above about Trileptal causing Vitamin D deficiency. I have never heard this but have heard that TEGRETOL is the dangerous one for your bones.
When I was on Trileptal, I never noticed any bone problems. Unfortunately though, Trileptal doesn't help for very long; I had to find something else in a year's time, as a dose over 1200 mg gave me too many side effects. How many mg are you taking on your Trileptal. Maybe it is the dose causing the bone insufficiency.
I also am on Vitamin D3. I take 9-10,000 units a day and test at being 66 out of 99 for the level of Vitamin D in my body. Between 66-99 is what is optimal.
I hope the Neurontin helps me. I was able to get a night's sleep last night for the first time in a week. I am not sure, but I think I will have to start on 900 mg a day, to prevent the awful attacks. My doctor only wanted me to start on 300mg a dat and slowly increase it every 4 days, but the pain was too severe.
Also Homeopathic remedies can help which I have used in the past. Unfortunately, the ones from Biogetica.com only lasted for 6 months. Then you have to find something else that works. Then you can go back to the herbs for Trigeminal Neuralgia after a period of time away from them. It is too bad that so many things lose their effectiveness to help the pain of this affliction. But to take a drug vacation away from it using homeopathic remedies which has absolutely no side effect, is probably ok
You can also try homeopathic remedies while you are taking Trileptal, and then after a month or two, ween yourself off of the Trileptal, and see NO PAIN. But it didn't last more than the 6 month period for me.
Teacher, I take 1200 mg per day. I hope the Neurontin works for you too. You may have to take a higher dose, but you have plenty of wiggle room so I wish you luck.:) For me, I just hope it's because of the winter and when it gets warmer I'll be fine, right now I take a percocet and the breakthru ear pain is controlled. I don't wanna go any higher up on the Trileptal, that's for sure!!! I think that's highest tolerable level anyway.. lol
When I was feeling good at one point we tried to ween down off the trileptal and after 3 days I couldn't take it the ear pain was excruciatingly painful. I HAD to go back up. So if this stops working I guess we'll have to go back to Neurontin. IDK. But I guess I'll cross that bridge if/when I come to it.
trileptal at 1200 mg per day is a good dosage. Even 1250 mg a day is ok. It is when I went to 1300 mg a day, that I got awful side effects....although it helped the pain better. However, Trileptal does not do any permanent damage, it just may cause you to feel nausea and dizziness and loss of balance at higher dosages only. But it was pretty good during the year I was on it.
I'm on Trileptal, which is supposed to be as effective as Tegretol, but without the horrible side effects. I have TN2 and this works OK for me, as well as 50mg of Amitrypiline at bedtime. I have been on this combination since April last year.
Ask your Neuro whether he thinks Trileptal would work for you.
Thanks for the info. I've been wondering how someone was doing at a higher dosage of this med. I appreciate your response. I will keep this in mind. It already causes nausea at times for me, so I don't think I am too interested in going any higher.
teacher said:
Min:
trileptal at 1200 mg per day is a good dosage. Even 1250 mg a day is ok. It is when I went to 1300 mg a day, that I got awful side effects....although it helped the pain better. However, Trileptal does not do any permanent damage, it just may cause you to feel nausea and dizziness and loss of balance at higher dosages only. But it was pretty good during the year I was on it.
Thanks Anne I'm going to ask for that one.. Trileptal as I'm not feeling any better on the teg. I woke up this morning and couldn't move I was so full of fear. I thought about ending it all as I feel like my life is broken and I am breaking the lives of my family by being a constant pain in the arse. I have been crying all morning and feel like i can;t go on like this. I know i have to but the feelings are quite over whelming. I don;t think its a will to die its a desire for all this to stop so I can carry on my life. I don;t feel like I have any life at the moment. Sorry to moan, Going on and on, Poor me, bla bla bla. Thanks xx
Debra, some while ago I felt just like you. My pain was out of control, my meds were making me into someone I did not know. I begged for a referral top a neuro and she has helped me more than I can tell you. I have a near normal life and function well. You would be more of a pain in the **** if you were not here. The life of your family would never be the same again. Pester your Dr, when I am unmanaged ,my GP calls every few days to see if I need help. You do need help, ask for it, and come here and vent your frustrations, anytime.
help. I am on Neurontin, the first day, it helped but I was a zombie. the 2nd day it helped during the day but the shocks came back at night. Only on it for 2 days, today is the 3rd day. Tell me does it take some time in your system before it works?
I have only had about 1200 mg yesterday, and only 300 mg the first day. I have to work up to 1800 mg by doctor's recommendation.
does it take time to work? do I need more patience. I think the intensity of the shocks, though, when they do come, is a little lower with the meds.
I'm so sorry you are in so much pain. I know exactly how you feel, you wonder if your life is going to be like this forever.
But don't despair, I can guarantee it won't be. I'm afraid that patience is needed for meds to work completely and it is often trial and error finding the med, or combination of meds that works best for you.
I'm sure you're family don't think you're a pain. They are probably worried about you and feel helpless not knowing how to make you feel better.
Don't worry about moaning here, everyone has felt like you at some stage and may be able to help.
Thinking of you,
Anne
Debra said:
Thanks Anne I'm going to ask for that one.. Trileptal as I'm not feeling any better on the teg. I woke up this morning and couldn't move I was so full of fear. I thought about ending it all as I feel like my life is broken and I am breaking the lives of my family by being a constant pain in the arse. I have been crying all morning and feel like i can;t go on like this. I know i have to but the feelings are quite over whelming. I don;t think its a will to die its a desire for all this to stop so I can carry on my life. I don;t feel like I have any life at the moment. Sorry to moan, Going on and on, Poor me, bla bla bla. Thanks xx
Thanks Ann, I feel a bit better today more in control but going to go see the GP and see if I can swop to Trileptal as it seems to be the way forward. I'm finding the lack of control over my body the most upsetting thing at the moment. I think I'm very sensitive to medication as I've never been able to drink alcohol like other people, two glasses of wine will give me a really bad hang over. I don't think i have a very good liver! I really appreciate all the loving support I've received on this site. Its made such a difference to me.
hi. I am glad you maybe switching to Trileptal. It doesn't have the serious possibilities of side effects that Tegretol has. I was on it for a couple of years so I know a little about it. It lowers the sodium level in your body, thus, reducing the conduction of shocks in your face and head. It helped me for quite awhile, until I had to up the dose past 1200 mg.Then at that dose you may feel some minor health side effects like nausea and dizziness. But usually only older people around 60 get those side effects. I am 61. If you are younger than you won't have that problem if you have to up your dose.