I have some questions that I am asking to everyone and anyone.
I have had TN for about 4 years. The only med that works for me is Tegretol. The highest dose of 1200 allowed is very typical for me. I have tried backing off and then it flares up so then I have to move up to the highest doses.
Some issues that I am having, I just don't know if anyone else experiences these other problems, so here are the questions.
My fatigue is brutal.Sometimes I can't wait for bedtime, LOL
It seems I have pain all over my body. My ankles,my hip, my back,arm, my shoulder, my neck. I have done PT but that did nothing.
My hair is like straw. Literally. I have used every product out there. As well as, my hair is becoming very thin and I am actually losing hair. I told the Neurologist and he said that had nothing to do with Tegretol. I usually get a pat on the back, type of appointment. Irritating.
Do any of you have any of these issues since your TN and all the meds.
I am taking about 1600mg of tegretol per day now and I know EXACTLY what you mean about the fatigue. SO BRUTAL! It's all I can do to get through a day. I am very forgetful too. The hair issue sounds more like a thyroid issue to me. I have been hypothyroid for many years and the hair falling out was the indicator, plus being tired. Get your thyroid checked. I don't think it has to do with the tegretol either, but I am not a doc.
Boy do I know the tired feeling - I went to bed at 8 last night after not being able to stay awake in my chair. I sleep about 10 hours a night, sometimes longer since being terminated from my job about 3 weeks ago for missing so much work due to all of this. I had severe hair loss with several meds, not tegretol though. I could not take it due to severe upset stomach. Topamax and Wellbuterin both had me loosing handfuls of hair. Right now I am on 900 mg of oxycarbazipine and 800 mg of gabapentin. 10 mg of baclafin at bedtime and tramadol and oxycodone for break through pain. 60 mg of Cymbalta to try to control the depression. Have to go for a blood test tomorrow to see if my sodium is staying stable. My hips also hurt so much that I can no longer sleep on my side. I don't know what that is about. If it is not one thing it is another. Wishing you well!!
Hi, my hair fell out in clumps once I went pass 800 mg. On my print out from the pharmacy it has hair loss listed under serious side effects (I am in Canada if that makes a difference). My Neuro has had only one other patient lose their hair with with it. FYI the print out is for the extended release, it doesn't show hair loss listed on the non-extended release - interesting. Anyhoo, I only take 200 mg twice a day now along with a combo of meds to keep the pain away. Hair has not fallen out since I scaled back on it but is rather thin for me these days. Check with your pharmacist they were very helpful getting my drug cocktail figured out for me.
If you are on thyroid meds your doc should have mentioned that Tegretol can void thyroid meds. I am on both and often get my levels checked to be sure both are within theraputic range. I have also experienced hair loss and brittleness but given that I am 52 I thought it was more hormonal than medication related.
Patty, I have bloodwork regularly too. So far it has not affected my thyroid meds, but I take my synthroid FIRST THING in the morning on an empty stomach, then wait 2 hours before taking my tegretol.
Patty said:
If you are on thyroid meds your doc should have mentioned that Tegretol can void thyroid meds. I am on both and often get my levels checked to be sure both are within theraputic range. I have also experienced hair loss and brittleness but given that I am 52 I thought it was more hormonal than medication related.
I agree with tiger4nikki about having your thyroid checked. When I first read your post, that was the first thing that came to my mind. I'm also on Synthroid for hypothyroidism and have to get it checked often. Still with normal levels, I have the side effects that I know are classic hypothyroidism. I think it makes the tiredness from the drug worse. Tegretol (I'm on 1200mg) does interact with Synthroid and I'm sure that it has and is off and on for me. Just had my MVD 3 1/2 weeks ago and am waiting for my nerve to settle down so I can wean myself off the Tegretol. That day can't come soon enough :)! Best wishes to you, Patty, this is a tough disease to manage (if you'd call it that). I love this online group for the ideas, support and hope :).
You may also want your doctor to check into Fibromyalgia...the fatigue and the soreness are very common symptoms of it. Plus it can often develop secondary to another painful disease like ours.
I have been on tegretol xr for a year. Presently I am on tegretol xr 1200mg and have gotten used to the fatigue. Sometimes it can be quite fierce though and I too, cant wait for bedtime. The tegretol stopped being 100% effective so I have tried going up to 1600mg and the side effects were just too much to deal with and work at the same time. So its the 1200mg tegretol and baclofen. I cant say I have ever had problems with my hair falling out. I agree with the thyroid idea. There were some days where I was having a flu-like pain....ya know like a truck ran me over...but it only lasted a day or two and then went away. I also have a neuropathy, burning pain in all of my extremities, mostly in my right arm and hand that comes and goes but im sure that is something different than what you are experiencing. wish I could be of more help.
I totally understand what you mean about the tiredness and I too have some hair loss, but not the other aches and pains you mention. I also have a dreadful memory these days which is soooo frustrating as I am one of those who remembered everything and was relied on to do so!
My hair has been falling out for about 40 years,but i think that's just the male pattern baldness deal us guys love so much.I did get a low sodium count on one of my blood workups.Then the next one my chlorestrol was high even though i take the common med for that.I was taking the max dose carbamazepine time release,1800mgs i think it was.It also made me super tired and lethargic.It is nice to sleep well though looking at the bright side.I also had some stomach issues,but the doc wanted me to stay on it so i did.As nasty a med as it is i was always grateful for it and panicky if i got low.