I've taken gabapentin and felt like it did nothing for the pain, now I didn't get up past 600 mg but it made me feel like I didn't even trust myself to drive. I'd rather deal with the pain and have a painful life than be stuck in a medicated isolated world. Then I tried Lyrica and felt like it did a decent job...maybe 40-50% pain relief. But no generic and very expensive for me and insurance company hassles. I asked to try tegetrol and they first started me on 100 mg 2 x a day and told me to up it to 3x when I felt like I was tolerating side effects. At first it felt like a miracle...I'd say more like 60-70% or more relief. But it took a week of feeling like I had a hangover to get used to it. Then I needed more to maintain that level of relief. Now on week 3 I am at 100 mg 3x a day and feel like I'm going to need more. Is this how it goes for others...and how high do most people need to go? I'm not sure how much I could get to without feeling too weird to make it worth while. However, I didn't seem to experience any negatives with the Lyrica...so I could go back but it was less effective, more expensive (like hundreds more a month), and an insurance company hassle.
Thanks for any input :)
Gabapentin didnt work for me either and at 300mg x 3 a day I couldnt cope with the side effects, I also tried Lyrica ...waste of time and money, Im now on Tegretol 600mg x 2 a day and while my pain isnt under control if I forget to take a dose (I blame my age) the pain is beyond words. I cant take amytriptylene which is often also give in conjunction because Im allergic to it. Because of other medications I have to take for other issues I have, the ones I need for TN are classed as ineffective I'm waiting to have an MVD. There seem to be many cocktails of meds, each person reacting differently to which they take, unfortunately it can only be a trial and error system. There is a definitive list on here somewhere, Im new to this site so not sure exactly where it is, but when you find it have a look or maybe print it off and go and see your Doctor again? I hope you find a combination that suits you soon xxx
I am on tegretol 200mg and was maxed it once for I suppose my weight at1,000 and 350 mg of trileptal. This was before my MVD I am now taking 500 of only tegretol and it seems to keep the pain tolerable. My doctor would never prescribe any other medications. I have to say when I was maxed out on tegretol I was quite confused and tired but really had no choice. I still made it to work everyday but almost drove to the wrong job one day lol!
I would try to get to wait more than a week … Your body can get more used to side effects… Less dizzy on week three than week one, etc.
However, which ever you choose, get called in for you, lidocaine face patches…RX,
Many get relief and can keep meds lowered!
I started on tegetrol at 200mg 2x/day and told to go up to 400mg 2x/day if needed. I did 10 days at the lower dose and felt I needed to go up. The higher dose helped my pain at like 95% relief but I couldn't function. I was so drugged and sleepy all the time and it so jacked with my memory. My mom and sister came over and visited me on the second day after starting the higher dose and I don't remember anything at all about it! After 3 weeks on it pulled myself back down to the lower and stayed there for a while and have pulled myself off it totally to see if I'm through that flare. I've been totally off for 3 days now and had no pain at all until this evening. I'm feeling some pressure tonight from the front coming through but that's it, not to bad. I love the pain relief from it I just can't live like that. I have to find relief some other way! I homeschool my 5 kids, ages 1-12, and I just can't operate at all on it!
Jessica
I am also on Carbamazepine. I switched to slow release last year and found I had much better pain control. I take 400mg at 8am and another 400mg at 8pm. Prior I was taking 200mg every 4 hours. I did not like the continuous ebb and high of meds in my system. Might be worth talking to your doctor about.
Sorry to add to your question Curlysoo but does anyone experience hairloss with tegretol?
You are on a very low level of Tegretol. So, you have a lot of room to wiggle. I have been up to 1200 mg a day. You learn as you live with TN, that you may have times that your TN quiets down. So, then I back off maybe to 1000mg a day. If things are still OK, I give it a few days and then I try 800 mg a day. I never go below 600 mg a day because it takes too long for my body and the effects to take hold. Yes, this is a RX that makes you feel 'blah' but I eventually leveled out with that feeling as well. This is a disease that you have to manage for the rest of your life. I have tried about 6-8 other meds with no help at all so have always had to go back to Tegretol.
Hope that this helps and eventually, you will figure it out and then you have to tell your Drs. what actually works for you. When I was first diagnosed at the ER, they put me on 100mg. a day. It did NOTHING of course. But then once I got to the neurologist, he upped that number and eventually it took hold.
Wishish you the very best.
cindy
Anna, that is cute, you almost drove to the wrong job, LOL Hey, at least you can giggle about it.
I have done similar things during some of my higher doses and all you can do is shake your head.
Hang in there
Anna said:
I am on tegretol 200mg and was maxed it once for I suppose my weight at1,000 and 350 mg of trileptal. This was before my MVD I am now taking 500 of only tegretol and it seems to keep the pain tolerable. My doctor would never prescribe any other medications. I have to say when I was maxed out on tegretol I was quite confused and tired but really had no choice. I still made it to work everyday but almost drove to the wrong job one day lol!
I am on 800mg of Tegretol. 200 4x a day. I was also on 900mg of neurontin. I went off the neurontin after my nerve block in December. However the pain is returning and I’m going back on the neurontin. You are on a low dose and it is likely you will have to increase. The side effects are bad but I’ve really adjusted. I have been on 800 mg for 7 months and must say I function better now than when I first started. The tiredness and poor memory are my biggest issues, but I cope. I dislike the neurontin more. I stutter when I’m on it, but it helps the pain do I’ll take it.
Thank you all for your input!
I have definitely noticed I am losing hair.
Anna said:
Sorry to add to your question Curlysoo but does anyone experience hairloss with tegretol?
I cant say I have noticed any more hair loss than normal, as my name hints I have that awful curly hair that is cute on kids but a nightmare as you get older. I have thyroid problems and go through phases of more hair loss than usual, I've probably just put any extra hair loss down to that.
Anna said:
Sorry to add to your question Curlysoo but does anyone experience hairloss with tegretol?
YES - LIDOCAINE FACE PATCH!!! thank you :)
Kc Dancer Kc said:
I would try to get to wait more than a week ..... Your body can get more used to side effects.... Less dizzy on week three than week one, etc.
However, which ever you choose, get called in for you, lidocaine face patches...RX,
Many get relief and can keep meds lowered!
'am on Tegretol now, used to be in 200mg 2x a day but I upped the dose to 400 mg 2 x a day. It's still not doing anything for the pain. I was from a long term remission- like 1 year. i thought the pain will not go back but here it is; hope I'll survive this. looking forward to the remission, those were heydays.