Carbamazepine

Information about how to manage or reduce the severity of BFS symptoms

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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:37 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:37 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:37 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:37 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:37 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby TwitchyDoc on October 24th, 2012, 2:15 pm

Do not forget that we are not using these meds for their real purpose, we are not epileptics. For an epileptic, it would be extremely dangerous to stop the drug cold turkey. With Tegretol, first day you should take only 200mg and increase next days. Just follow the instructions that comes with the med.
I cannot explain why it does not work for me permanently...we barely know why it sometimes works.
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Re: Carbamazepine

Postby Scandinavian girl on October 25th, 2012, 4:08 pm

Oh no, same post many times.. sorry!
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Re: Carbamazepine

Postby seventhcandle on January 30th, 2013, 10:43 pm

TwitchyDoc wrote:I cannot explain why it does not work for me permanently...we barely know why it sometimes works.


I was curious about why the med stopped working for you, so I looked it up on wikipedia and found the following information:

Pharmacokinetics

Carbamazepine exhibits autoinduction: it induces the expression of the hepatic microsomal enzyme system CYP3A4, which metabolizes carbamazepine itself. Upon initiation of carbamazepine therapy, concentrations are predictable and follow their respective baseline clearance/half-life values that have been established for the specific patient. However, after enough carbamazepine has been presented to the liver tissue, the CYP3A4 activity increases, speeding up drug clearance and shortening the half-life. Autoinduction will continue with subsequent increases in dose but will usually reach a plateau within 5–7 days of a maintenance dose. Increases in dose at a rate of 200 mg every 1–2 weeks may be required to achieve a stable seizure threshold. Stable carbamazepine concentrations occur usually within 2–3 weeks after initiation of therapy.[26]

Granted TD, this is for seizure maintenance, but for BFS, I'd imagine liver absorption issues might have something to do with why it gradually stopped being effective for you. Just a thought.

I bring this issue back up now since Matt is on Tegretol and I have been given a script for it too, as of today. I have not started taking it yet, as I still have some liver issues to get resolved.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Carbamazepine

Postby Scandinavian girl on February 1st, 2013, 6:21 am

The latest 9 days I've struggled EXTREMELY with burning scalp. It started with crawling feeling in a little spot on top of my head, but spread to bigger and bigger areas and yesterday it god so bad I panicked and hyperventilated for several hours. I can not explain the pain, it's like my whole scalp is on fire! And part of my face. I had to tak 30 mg sobril and that is a very high dose, and I took all my other meds, pain killers, sleep med...I also tried a cream that is advised for burning scalp syndrome, it's a chili product, but it made it even worse, and the pain was unbearable. http://suite101.com/article/burning-sca ... me-a122459 found the cream here.
My doc prescribed it, but had to stop. My boyfriend had to hold my head under ice cold water for 1.5 hours.. and HOLD me, since I hyperventilated and shivered so badly. I've never felt such a pain, it was worse than delivering a kid. and the strange thing is that it is not so extreme in the morning, but gets worse and worse throughout the day and unbearble in the evening, and much worse for each day and it spreads. Now i'm terrified what will happen to me tonight, because it's soooo bad now and the clock is just 12.15 at day time..
my mother had to take me to the doctor to day, and he wrote a prescription on Tegretol/Carbamazepine, start 100 mg 4 times a day. And sobril (it's like valium) I'm willing to try everything now because this is crisis. I HATE taking so many meds, and specially Sobil/Valium (benzo), and that none of the meds are for the CAUSE, only symptomatologic. I was on doxycycline when all this started, it started after a week on doxy, but I've not dared to take it the latest 3 days. I have searched the net for burning scalp and there is a chance it is a "Herxheimers reaction" og a symptom of Lyme, and if this is Herxheimers I know I shouldn't stop the treatment, but I just had to to it because it is so bad I really don't wont to live anymore. I can not understand I actually have gotten a new symptom that is SO MUCH WORSE AND INTENSE than any other pain I've ever felt. Didn't think that was possible. Now I would do anything to have back the situation I had before the burning scalp.
Tegretol is now my only hope, so if someone have experiences to share with me, please respond.
The doctor also took new tests for hypothyroism, because I've had TSH a bit to high before (4.2) and positive ANTI-PTO (171). I've read that hypothyroidism can cause burning scalp, but the doctor didn't think my picture fits with that, and I've not been loosing more hair (yet). I see that often happens with burning scalp, and that scares me also because I'm a woman and have long hair.
Please help!
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Re: Carbamazepine

Postby aztwitchy on February 1st, 2013, 11:45 am

Scandinavian girl wrote:The latest 9 days I've struggled EXTREMELY with burning scalp. It started with crawling feeling in a little spot on top of my head, but spread to bigger and bigger areas and yesterday it god so bad I panicked and hyperventilated for several hours. I can not explain the pain, it's like my whole scalp is on fire! And part of my face. I had to tak 30 mg sobril and that is a very high dose, and I took all my other meds, pain killers, sleep med...I also tried a cream that is advised for burning scalp syndrome, it's a chili product, but it made it even worse, and the pain was unbearable. http://suite101.com/article/burning-sca ... me-a122459 found the cream here.
My doc prescribed it, but had to stop. My boyfriend had to hold my head under ice cold water for 1.5 hours.. and HOLD me, since I hyperventilated and shivered so badly. I've never felt such a pain, it was worse than delivering a kid. and the strange thing is that it is not so extreme in the morning, but gets worse and worse throughout the day and unbearble in the evening, and much worse for each day and it spreads. Now i'm terrified what will happen to me tonight, because it's soooo bad now and the clock is just 12.15 at day time..
my mother had to take me to the doctor to day, and he wrote a prescription on Tegretol/Carbamazepine, start 100 mg 4 times a day. And sobril (it's like valium) I'm willing to try everything now because this is crisis. I HATE taking so many meds, and specially Sobil/Valium (benzo), and that none of the meds are for the CAUSE, only symptomatologic. I was on doxycycline when all this started, it started after a week on doxy, but I've not dared to take it the latest 3 days. I have searched the net for burning scalp and there is a chance it is a "Herxheimers reaction" og a symptom of Lyme, and if this is Herxheimers I know I shouldn't stop the treatment, but I just had to to it because it is so bad I really don't wont to live anymore. I can not understand I actually have gotten a new symptom that is SO MUCH WORSE AND INTENSE than any other pain I've ever felt. Didn't think that was possible. Now I would do anything to have back the situation I had before the burning scalp.
Tegretol is now my only hope, so if someone have experiences to share with me, please respond.
The doctor also took new tests for hypothyroism, because I've had TSH a bit to high before (4.2) and positive ANTI-PTO (171). I've read that hypothyroidism can cause burning scalp, but the doctor didn't think my picture fits with that, and I've not been loosing more hair (yet). I see that often happens with burning scalp, and that scares me also because I'm a woman and have long hair.
Please help!


doxycycline is a horrible drug....I am convinced it is the reason I am on this forum....but thats another story. did the doctor check you for Fungal outbreak??? taking doxy as long as you have I suspect would open the door to fungus. When I was taking doxy what you are describing didn't affect my scalp but both my hands and feet would have that feeling you are describing...my hands would turn bright pink and feel like they were totally on fire. After 2.5 weeks of doxy I stopped taking it....the burning slowly faded and turned into more of numbness...eventually that changed to what I called nerve sparks...technical term is parathesias I believe....after a few months of that it turned into non-stop muscle twitching\cramps\etc....which unfortunately is where I still am today.

let us know how the tegretol works for you.

not sure if I believe in chronic lyme....
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: Carbamazepine

Postby seventhcandle on February 2nd, 2013, 2:43 am

Scandinavian girl wrote:The latest 9 days I've struggled EXTREMELY with burning scalp. It started with crawling feeling in a little spot on top of my head, but spread to bigger and bigger areas and yesterday it god so bad I panicked and hyperventilated for several hours. I can not explain the pain, it's like my whole scalp is on fire! And part of my face. I had to tak 30 mg sobril and that is a very high dose, and I took all my other meds, pain killers, sleep med...I also tried a cream that is advised for burning scalp syndrome, it's a chili product, but it made it even worse, and the pain was unbearable. http://suite101.com/article/burning-sca ... me-a122459 found the cream here.
My doc prescribed it, but had to stop. My boyfriend had to hold my head under ice cold water for 1.5 hours.. and HOLD me, since I hyperventilated and shivered so badly. I've never felt such a pain, it was worse than delivering a kid. and the strange thing is that it is not so extreme in the morning, but gets worse and worse throughout the day and unbearble in the evening, and much worse for each day and it spreads. Now i'm terrified what will happen to me tonight, because it's soooo bad now and the clock is just 12.15 at day time..
my mother had to take me to the doctor to day, and he wrote a prescription on Tegretol/Carbamazepine, start 100 mg 4 times a day. And sobril (it's like valium) I'm willing to try everything now because this is crisis. I HATE taking so many meds, and specially Sobil/Valium (benzo), and that none of the meds are for the CAUSE, only symptomatologic. I was on doxycycline when all this started, it started after a week on doxy, but I've not dared to take it the latest 3 days. I have searched the net for burning scalp and there is a chance it is a "Herxheimers reaction" og a symptom of Lyme, and if this is Herxheimers I know I shouldn't stop the treatment, but I just had to to it because it is so bad I really don't wont to live anymore. I can not understand I actually have gotten a new symptom that is SO MUCH WORSE AND INTENSE than any other pain I've ever felt. Didn't think that was possible. Now I would do anything to have back the situation I had before the burning scalp.
Tegretol is now my only hope, so if someone have experiences to share with me, please respond.
The doctor also took new tests for hypothyroism, because I've had TSH a bit to high before (4.2) and positive ANTI-PTO (171). I've read that hypothyroidism can cause burning scalp, but the doctor didn't think my picture fits with that, and I've not been loosing more hair (yet). I see that often happens with burning scalp, and that scares me also because I'm a woman and have long hair.
Please help!


I know what it is like to struggle with a symptom that makes you feel this way. I cannot imagine the pain you are in and I really, really hope you get some relief with the tegretol. I, too, feel like it's my only hope, but I haven't been able to try it yet (although I filled the script today) until I get my liver scan done next week. I think you are most likely having a reaction to the doxycycline. I swear, I will never touch anything in the "doxy" family ever again, so long as I live. My BFS started the day I took doxylamine succinate.

God, I hope you get some relief. Please keep us updated.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Carbamazepine

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