Anybody got any info on the med Tegretol . I will be starting this one to replace the Trileptal … Trileptal done the job but it pull my sodium down…appreciate any info… God bless
I am currently on Tegretol. Just got my diagnosis, but I noticed IMMEDIATE relief from my pain. Took my 1st dose that evening, and by morning I was all better. As far as side effects, I would read up on that because it CAN mess with other meds. I will have to keep a closer watch on my thyroid levels because of it.
What mg are you on ?
Hi Donna - I take a very small dosage every night -- If I take more (which the Dr tells me I should) I lose my balance, am extremely forgetful, dizzy and can't drive. Maybe this is just me, I don't know. I've taken it for a year now and it has lessened the pain to "not" so excruciating. It has shortened the # of days I have the pain at one time - used to be 4, now it is 2. However, I get the attacks more often - every 7 - 10 days. I wanted to know if anyone has tried medical hypnosis???
Nancy said:
Hi Donna - I take a very small dosage every night -- If I take more (which the Dr tells me I should) I lose my balance, am extremely forgetful, dizzy and can't drive. Maybe this is just me, I don't know. I've taken it for a year now and it has lessened the pain to "not" so excruciating. It has shortened the # of days I have the pain at one time - used to be 4, now it is 2. However, I get the attacks more often - every 7 - 10 days. I wanted to know if anyone has tried medical hypnosis???
I was initially put on Topomax by a neurologist and it did nothing. I saw my current neuro who diagnosed my TN and he prescribed Tegretol which worked incredibly well. By the second day Incould actually touch my face with no pain! It did make me very sleepy, but I was still weaning off the Topomax. Unfortunately, I had a very severe allergic reaction and can no longer take Tegretol. I am now on 2400 mg a day of Neurontin, but it still does not work like the Tegretol. It is a great medication for TN, but you will have to get bloodwork done to check liver function periodically.
I hope it works for you.
Best of Luck!
Christine may I ask what your reaction was ? I was on the neurontin also I had bad blurred vision with it … Thanks for the info… God bless !!!’
My reaction was to Tegretol. I broke out in a rash all over my body, then my face got very swollen. I think the reason the reaction was so severe was that I started to react on Sunday, and my neuros nurse did not really understand how bad it was when I called on Monday. I kept taking the Tegretol until I saw my doctor on Tuesday. He said he had not seen such a bad reaction in his 25 years of practice! I stopped the Tegretol, took prednisone for about a week, along with Neurontin. So far, I has not noticed any side effects, but I have noticed a change in my vision. I did not even think it could be the Neurontin until you mentioned it. I have an appointment to see my Opthamologist in a few weeks, so I will be sure to ask about that.
Sorry this is so long:)
Best ,
Christine
I am on 100mg twice a day til tomorrow. Then I have to up it to 200mg twice a day. I hope I don't get too sleepy, LOL! But I have heard of some people taking WAY more than that, so I am assuming mine is a very low dose.
Donna said:
What mg are you on ?
100mg twice daily starting Friday . Right now I’m on just 1/2 and the shocking is still there… Are you having good luck with it ?
I am also taking 100mg tegretol twice a day.still get some occassional pain.dr wants me to go to 200mg twice a day but i do find it makes me a bit tired.the side effects seem to settle after a few days.
hi,
I have been on gabapentin for two years. had a big breakthrough 4 weeks ago, upped the gabapentin and it did nothing. I started the tegretol Sunday and have been on both for 4 days. today I start gabapentin 3x/day (900mg) and tegretol 100mg 2x/day. keeping my fingers crossed. oh, and I haven't touched my face in two years!
Good luck on the tegretol it made me very tired and I couldn’t see 30ft
In front of me… I’m checking in on Botox treatments my friend had them for TN she medicine free… All these meds the side effects is scary especially on kidneys and liver… Best wishes… God bless
I was on Neurontin and it did nothing. I tried Topomax and I felt terrible AND it did nothing. I am currently on Tegretol. The Dr started me on 200mg at night. Within 3-5 days I felt that the intensity of the pain was not as bad. But not by much. A 8/10 pain would feel like a 7/10. The Dr just upped my dose last week and I am now on 200mg x2 a day. I had terrible insomnia for 4 nights. I felt like the room was spinning when I closed my eyes. Last night was the first night I slept. When I take it in the morning I cannot drive for a while. I am way too dizzy from it. I also get this feeling that my head is vibrating. Like if I was in a huge church bell and someone just banged it. (I told my husband this and he didn't quite get what I meant. I don't know how else to explain it.) I honestly don't know how much longer I'll be able to tolerate this. I'm going to give it a week more to see if I get used to it. I feel bad mentioning this because I tend to be sensitive to a lot of meds and I don't know if it's just me that gets these reactions, but I just want to give you the head's up.
Donna, I hope your Dr told you that you need to get bloodwork done when you take Tegretol. I have to do mine later this week since he raised the dose. I wish I could read his handwriting to let you know exactly what it is he has me getting done. I just remember something about bone marrow and anemia.
-I
both of them dropped my sodium levels
I am now on 3600mgs of gabapetin and 30 mgs of baclofen, they do a fair job of keeping the TN under control but nothing works as well as Tegretol.
best wishes
carol
Hi Donna,
I have been on Tegretol for years now. My dosage has changed over the years but it is a great help. It was an almost immediate relief for me.
I have been on as high as 1500mg per day to as low as 100mg per day. Right now I am on 200mg 2x daily. I have elevated liver enzymes so as they go up the dosage of my Tegretol has dropped but it has been a god send to me.
With the lower dosage of Tegretol my other meds had to be adjusted. In addition to the Tegretol 200mg 2x day I take Baclofen 15mg 3x day, Methadone 5mg every 12 hours, Flexiril 5mg every 6 hours as needed, Norco 7.5/325mg every 4 hours as needed, and Klonopin 0.5mg 2x day.
I have blood work done every month just to make sure everything is ok and make sure my liver enzymes aren't getting higher. It sucks but that is my regimen.
When I first got diagnosed I was on Neurontin and wow...it made me so crazy mean. I could not stand myself let alone anyone else. It was awful. I was on 1200mg a day for 3 weeks. That was it. I was afraid I was going to hurt myself or someone else it was that bad. I just happen to be one of the lucky percentile that has those side effects.
I wish you luck with the Tegretol!!
LaLa
Thanks LaLa but I’m back on Trileptal I just couldn’t handle tregerol my vision was do blurred I waited for 2 wks the doc said that’s to long for blurred vision… Good luck … God bless
Donna
The Eegretol worked for me. I had very little breakthrough pain. Neurologist just took me off because i broke out in a rash on the top half of my body. He just put me on Cytotec. I have only taken new med for 2 days and still in pain. Good luck with the Tegretol. Only down side to it was it made me sleepy.
im on a generic for trileptal how do u know if your sodium is low no dr has discussed this with me or other things it may be doing to me??????????????????????????????/
To me Tegretol is the DEVIL!!! It makes me see double and I feel like crap. I can't drive when I take it and I HATE this drug!!