Health QuestionsCategory: TreatmentsNon-stop headache on Tegretol – about to switch
scuba asked 3 years ago

Hi,
 
I was on Keppra and was about to switch to Depakote, but a 3rd Neurologist suggested Tegretol, so I moved to that.  Here is my history from another post (http://www.crazymeds.org/cgi-bin/yabb2/YaBB.pl?num=1141661394)
 
I’m not sure if I “fit” in this forum but here goes.  I’m 40 and had a seizure 2 weeks ago (my first) in front of my wife.  Apparently it was long (6 – 7 minutes), full body, turn blue then green — the whole 9 yards.  I had a CT scan, blood work, MRI and EEG.  My EEG came back abnormal on my left hemisphere and doc #1 said because of that I have a propensity to seizures and need to be on meds (a temporal focus).
 
I switched from Keppra to Tegretol 3 weeks ago.  I’ve had a non-stop headache that varies between mild to migrane.  Over the past week, 2 nights I’ve awakened in pain because of the headache, which is new.  The first 2 weeks on Tegretol were extremely difficult (zombie, jump out the window depressed, angry) and I am not excited about switching again.
 
Anyone out there experienced an initial headache on Tegretol that went away?  Is there hope or should I switch now to Depakote?
 
 
Sincere thanks to anyone who reads this and takes the time to respond.
 
Not bi-polar or crazy but I guess prone to big-ass seizures,
Scuba

3 Answers
Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
When I started Tegretol, and any time we upped the dose (the first time, this time I’ve been fine) I got a monsterass headache. It went away, though…I probably titrated way slower than you, hence my headache free days after a few bad ones.
 
Ultimately it’s your body…I wonder why they suggested Tegretol instead of Trileptal, though…hm…
 
Kassiane
one of few people on the planet who does significantly better with Tegretol than Trileptal

scuba answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Hi,
 
Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?
 
Thanks,
Scuba

Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Quote from scuba on 10. Apr 2006 at 23:50:

Hi,

Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?

Thanks,
Scuba

 
 
Mine stopped 3 days or so after each increase…I only ever got to 400mg, this time I’m on a whole whopping 100 for now, Wed. I increase it.  
 
When I started, really all I noticed was the headache and being able to sleep. When I hit 400 I got toxic for a day and went back down to 300mg, but it wasn’t the same after that. I got really tired and suddenly sun sensitive and really bruised. This was because my blood counts dropped, though, and I had to stop taking it. My toxicity symptoms were change in hand dominance (which I get anyway but it was really sudden), vision problems, nystagmus, and severe nausea. This time I havent had anything yet, though I’m also considering my headaches a breakdown in my vision process b/c of new glasses. They’re different than drug headaches. I’ve had some myoclonic jerks, too, but they’re an improvement on tonic-clonics.
 
When I STOPPED it I had a ton of seizures, and got really mixed statey, and it was just bad.
 
Kassiane

scuba asked 3 years ago

Hi,
 
I was on Keppra and was about to switch to Depakote, but a 3rd Neurologist suggested Tegretol, so I moved to that.  Here is my history from another post (http://www.crazymeds.org/cgi-bin/yabb2/YaBB.pl?num=1141661394)
 
I’m not sure if I “fit” in this forum but here goes.  I’m 40 and had a seizure 2 weeks ago (my first) in front of my wife.  Apparently it was long (6 – 7 minutes), full body, turn blue then green — the whole 9 yards.  I had a CT scan, blood work, MRI and EEG.  My EEG came back abnormal on my left hemisphere and doc #1 said because of that I have a propensity to seizures and need to be on meds (a temporal focus).
 
I switched from Keppra to Tegretol 3 weeks ago.  I’ve had a non-stop headache that varies between mild to migrane.  Over the past week, 2 nights I’ve awakened in pain because of the headache, which is new.  The first 2 weeks on Tegretol were extremely difficult (zombie, jump out the window depressed, angry) and I am not excited about switching again.
 
Anyone out there experienced an initial headache on Tegretol that went away?  Is there hope or should I switch now to Depakote?
 
 
Sincere thanks to anyone who reads this and takes the time to respond.
 
Not bi-polar or crazy but I guess prone to big-ass seizures,
Scuba

3 Answers
Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
When I started Tegretol, and any time we upped the dose (the first time, this time I’ve been fine) I got a monsterass headache. It went away, though…I probably titrated way slower than you, hence my headache free days after a few bad ones.
 
Ultimately it’s your body…I wonder why they suggested Tegretol instead of Trileptal, though…hm…
 
Kassiane
one of few people on the planet who does significantly better with Tegretol than Trileptal

scuba answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Hi,
 
Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?
 
Thanks,
Scuba

Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Quote from scuba on 10. Apr 2006 at 23:50:

Hi,

Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?

Thanks,
Scuba

 
 
Mine stopped 3 days or so after each increase…I only ever got to 400mg, this time I’m on a whole whopping 100 for now, Wed. I increase it.  
 
When I started, really all I noticed was the headache and being able to sleep. When I hit 400 I got toxic for a day and went back down to 300mg, but it wasn’t the same after that. I got really tired and suddenly sun sensitive and really bruised. This was because my blood counts dropped, though, and I had to stop taking it. My toxicity symptoms were change in hand dominance (which I get anyway but it was really sudden), vision problems, nystagmus, and severe nausea. This time I havent had anything yet, though I’m also considering my headaches a breakdown in my vision process b/c of new glasses. They’re different than drug headaches. I’ve had some myoclonic jerks, too, but they’re an improvement on tonic-clonics.
 
When I STOPPED it I had a ton of seizures, and got really mixed statey, and it was just bad.
 
Kassiane

scuba asked 3 years ago

Hi,
 
I was on Keppra and was about to switch to Depakote, but a 3rd Neurologist suggested Tegretol, so I moved to that.  Here is my history from another post (http://www.crazymeds.org/cgi-bin/yabb2/YaBB.pl?num=1141661394)
 
I’m not sure if I “fit” in this forum but here goes.  I’m 40 and had a seizure 2 weeks ago (my first) in front of my wife.  Apparently it was long (6 – 7 minutes), full body, turn blue then green — the whole 9 yards.  I had a CT scan, blood work, MRI and EEG.  My EEG came back abnormal on my left hemisphere and doc #1 said because of that I have a propensity to seizures and need to be on meds (a temporal focus).
 
I switched from Keppra to Tegretol 3 weeks ago.  I’ve had a non-stop headache that varies between mild to migrane.  Over the past week, 2 nights I’ve awakened in pain because of the headache, which is new.  The first 2 weeks on Tegretol were extremely difficult (zombie, jump out the window depressed, angry) and I am not excited about switching again.
 
Anyone out there experienced an initial headache on Tegretol that went away?  Is there hope or should I switch now to Depakote?
 
 
Sincere thanks to anyone who reads this and takes the time to respond.
 
Not bi-polar or crazy but I guess prone to big-ass seizures,
Scuba

3 Answers
Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
When I started Tegretol, and any time we upped the dose (the first time, this time I’ve been fine) I got a monsterass headache. It went away, though…I probably titrated way slower than you, hence my headache free days after a few bad ones.
 
Ultimately it’s your body…I wonder why they suggested Tegretol instead of Trileptal, though…hm…
 
Kassiane
one of few people on the planet who does significantly better with Tegretol than Trileptal

scuba answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Hi,
 
Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?
 
Thanks,
Scuba

Kassiane answered 3 years ago

Re: Non-stop headache on Tegretol – about to switc
Quote from scuba on 10. Apr 2006 at 23:50:

Hi,

Thanks for the response.  How long was it after starting tegretol did the headaches stop?  Also, I am wondering what it was like for you during the initial phase of taking the drug:  what symptoms and how long did they last before the fog cleared?

Thanks,
Scuba

 
 
Mine stopped 3 days or so after each increase…I only ever got to 400mg, this time I’m on a whole whopping 100 for now, Wed. I increase it.  
 
When I started, really all I noticed was the headache and being able to sleep. When I hit 400 I got toxic for a day and went back down to 300mg, but it wasn’t the same after that. I got really tired and suddenly sun sensitive and really bruised. This was because my blood counts dropped, though, and I had to stop taking it. My toxicity symptoms were change in hand dominance (which I get anyway but it was really sudden), vision problems, nystagmus, and severe nausea. This time I havent had anything yet, though I’m also considering my headaches a breakdown in my vision process b/c of new glasses. They’re different than drug headaches. I’ve had some myoclonic jerks, too, but they’re an improvement on tonic-clonics.
 
When I STOPPED it I had a ton of seizures, and got really mixed statey, and it was just bad.
 
Kassiane