Hi
I have recently been experiencing scalp tingling, shocks, and pain. It hurts to put my head back on the pillow, or couch. I am exhausted because I started Tegretol 6 days ago. Going up to 400 mg today. I am able to sleep at night, thank GOD! During the day is rough.
Has anyone experienced this? I don't know if it's TN or something else. Have MRI in a couple days. Also, what mg's of Tegretol have you seen relief?
I appreciate any feedback. Thanks
I started Tegretol the same day you did! I started with 200, but have gone to 400, and the pain is gone. I think. For now. But I have numbness on that side of my head, especially around and in my ear, and tingling in my jaw. Of course, I have quit chewing or biting on that side also, because if I bite down I get a full-blown episode that lasts about 20 minutes. I am feeling kind of nauseous and tipsy most of the time. But I can probably live with this.
Good luck to you. My doctor said to go up to 600 if I needed to, then call before taking any more. I have also been taking extra strength tylenol and night time tylenol at night.
I was just diagnosed last week, by a dentist!
How do u take tegretol? 200 at night and 200 in morning? I did take tegretol a month or so and at 400 it did go away but I was having drunken drowsiness as well as spotting in the middle of my cycle-stupid dr made me stop it and go on trileptal which did not work. Now I am with a new dr and back on tegretol. i am going to 400 mg today but I am spacing it out throughout day so I am not as drowsy. 100 mg 4 times a day. Praying it works again. Also praying my scalp feels better.
Don't stop Tegretol no matter what!! Happy for u.
I also have the tingling scalp....I am on 300mgs of Tegretol.
I think it would make more sense to space the four pills through the day, but they said morning & night. I will ask my doctor tomorrow when I see him. Did you guys have MRI's? I am still concerned because I haven't had an MRI. It can be anything in our head pressing on a nerve, right? Not just always a vein? I have some questions for him.
Yeah ask your doc about spacing it out. I am waiting to hear back from mine-he better call today. I am having an MRI of head THurs with reluctance. I have hyperacusis-extreme sensitivity to sound, so I am quite concerned-i'll use ear plugs and hopefully plastic ear phones-you know the kind u wear at a shooting range. I am taking all precautions that i can. Very nervous about it. He wants MRI because I am having these shocking pains on legs arms and he's making sure it's not MS or Fibromyalgia. I am a wreck about it all!! He also wants a cervical spine MRI but I am not doing that yet. The brain is 40 minutes which is long enough for me. Some people don't necessarily get MRI's if they respond to meds like you did. I am just a bundle of nerves and I also am experiencing head tingling and pain so I've had enough by now!!!
is it to the point where u can't lay down on the back of your head? Cause that's what mine is doing? 300 mg is not working for me-on day 4 with 300 nothing happening. So do u take it just AM and PM? Or spread out more?
barberchick said:
I also have the tingling scalp....I am on 300mgs of Tegretol.
Oh and you really need to get the book Striking Back by George Weigel and Kenneth Casey-It's excellent!
coartchick said:
I think it would make more sense to space the four pills through the day, but they said morning & night. I will ask my doctor tomorrow when I see him. Did you guys have MRI's? I am still concerned because I haven't had an MRI. It can be anything in our head pressing on a nerve, right? Not just always a vein? I have some questions for him.
I too have had tingling, crawling and tenderness all over my scalp which hurt when I laid on a pillow, along with the TN2 pain in my face and ear. The medication helped with that, but if I am going through the process of changing medication and am on a low dose the tingling comes back. I am now on Trileptal, 450mg morning and night which took a few weeks to start working, but now with 50mg of amitryptiline I feel the best I have felt in years. I still have pain but at a level I can handle.
Hi Anne
Well, it's nice to know that someone else has this too. I figured it was TN because when I sleep it is dormant. THANK GOD. I wish this Tegretol would start working. I am at 400 mg. I was on it before and it worked at this dosage. My doctor took me off of it cause of side effects but he was an idiot and I found a new dr. I tried trileptal next for about 2 and a half weeks, did nothing. I was getting worse. So I went back to Tegretol with new dr. What is amitryptiline? I have an MRI tomorrow of the brain. Really not excited about that-I also have hyperacusis-extremem sensitivity to sound. Gotta protect my ears as best I can-ear plugs-etc.
As far as my scalp, I find it the worst of it all-I have tn on both sides of face-cheeks chin ear-ear can be bad!
Hi, hope you're feeling OK. Amitryptiline (I think thats how you spell it) is an anti-depressant that is also used for neuropathic pain in a low dose. I've been taking it for about 12 months now and it does work for me when used in conjunction with an epilisy drug. Hope your MRI went OK. I took a CD when I had mine to listen to in-between the clunking of the machine. I couldn't believe how noisy it was.
mglen32 said:
Hi Anne
Well, it's nice to know that someone else has this too. I figured it was TN because when I sleep it is dormant. THANK GOD. I wish this Tegretol would start working. I am at 400 mg. I was on it before and it worked at this dosage. My doctor took me off of it cause of side effects but he was an idiot and I found a new dr. I tried trileptal next for about 2 and a half weeks, did nothing. I was getting worse. So I went back to Tegretol with new dr. What is amitryptiline? I have an MRI tomorrow of the brain. Really not excited about that-I also have hyperacusis-extremem sensitivity to sound. Gotta protect my ears as best I can-ear plugs-etc.
As far as my scalp, I find it the worst of it all-I have tn on both sides of face-cheeks chin ear-ear can be bad!
I am still taking the 400. I can taste it in my mouth, and it seems like I can "taste" it in my eye! Does anyone else feel this way? It is working for the shocks, but I have decided I must have type 2, because my pain travels constantly from eye to temple to cheekbone to teeth and jaw, and under my ear. Is this just the way this is?
Mglen: I am spacing them throughout the day. How were the results of your MRI?
Hi coartchick
Thanks for asking. Yes I spaced mine now too-up to 600 mg's MRI results good-no MS or anything else