Tegretol and Horrible Headaches/Migraines

[Chelsea]

Hi all,

It's good to be back. I just got out of the hospital less than a week ago (I had status).

I was started on Tegretol, and I have had some horrific headaches daily. I fear that I am taking too much ibuprofen. Has anyone else experienced this? How do you cope?

I also was diagnosed with refractory temporal lobe epilepsy and scheduled for a SPECT (whatever the heck that is). I have been rat racing around trying to get things in order, and, on the flip side, trying not to stress myself out.

Best to all, hope the CWE community is having a wonderful day.

Chels.

 

[Buddy's owner]

Sorry to hear about the head aches. I'm on tegretol but being weaned off and my neurologist said I could have been having seizures in my sleep as I wome up with a migraine which I only get if I've had one of my tonic clonics. He upped my dose slowly and no migraines. I haven't had headaches due to ibuprofen though. The slight head aches I get now are just a side effect of the pill.

 

[C0urt]

sorry about the headaches.
I have temporal lobe epilepsy you aren't ever alone I am on tegratol to. I am really high dose.

I have head aches to, they are even worse without caffiene..I now it sounds bad but it could be much worse. they make it hard to get out of bed some days. I dont take drugs for them because I don't want to build up a tolerance for when I really need them. plus they only make it worse. and they probably are a side effect of the meds.

I do find something else to think about or music to listen to sometimes. considering the big picture including mind numbing pain, it can be a whole lot better. of course that being the case when someone in the office complains about a headache, it is hard to have sympathy of any sort.

 

[Chelsea]

Sorry to hear about the head aches. I'm on tegretol but being weaned off and my neurologist said I could have been having seizures in my sleep as I wome up with a migraine which I only get if I've had one of my tonic clonics. He upped my dose slowly and no migraines. I haven't had headaches due to ibuprofen though. The slight head aches I get now are just a side effect of the pill.

That's wonderful that you don't have any migraines with the increased dosage. I was just curious to see if anyone else had experienced the same side effect.

The MD said that I could take 600 mg ibuprofen every 6 hours for headache, but that has to do a number to the liver. Plus, if a person consistently takes medicine for a condition, the liver gets accustomed to metabolizing that specific medicine.

 

[Chelsea]

sorry about the headaches.
I have temporal lobe epilepsy you aren't ever alone I am on tegratol to. I am really high dose.

I have head aches to, they are even worse without caffiene..I now it sounds bad but it could be much worse. they make it hard to get out of bed some days. I dont take drugs for them because I don't want to build up a tolerance for when I really need them. plus they only make it worse. and they probably are a side effect of the meds.

I do find something else to think about or music to listen to sometimes. considering the big picture including mind numbing pain, it can be a whole lot better. of course that being the case when someone in the office complains about a headache, it is hard to have sympathy of any sort.

Thanks for the feedback, C0urt, I really appreciate it. I was also hospitalized for 4 weeks at a behavioral health facility, in addition to that week for status. The MD took me off Lamictal and Dilantin rather quickly, and it thrust me into status. Lamictal gave me an OCD mentality that I couldn't stand.

I guess I also have some psychiatric effects of my epilepsy (hahahaha). That's another question I have for you; do you have psychiatric or mood disturbances b/c of your TLE?

I've also noticed I've been pumping the caffeine. Unsure of what to think about this. :-/

 

[cadsgj]

Interesting. I have been on tegretol for so many years and I never thought that it may be a cause for my headaches. For me it is a direct headache, left temporal lobe, just behind my eye, and after so long of it being regular in my day I quit taking ibuprofen unless it got to be real bad. Hmmm... and now I am almost positive I will be taken off the tegretol (or carbamazepine since I have been here in Canada - same). Chelsea, I do hope the headaches - migraines - settle down for you, and that your SPECT goes well

 

[C0urt]

I felt bad for ranting later after I thought about it, glad to help some.

I take 3 "100 mg tabs " 3 times a day. It can cause anger if not done right. people who arent aware of what's going on always say I am one of the laid back people they know, but my close friends friends say I rarely smile. I have little patience for people, but I did customer service for a long time so I can deal with it. I aggravate easily to but I can deal.

I have a cross shaped scar in my right temporal lobe, cant take keppra, dilantan I couldn't take lamictial either, the list goes on because of really bad reactions.

 

[valeriedl]

I'm on Tegretol plus some other meds, but the only time I have headaches are after seizures.

When I take any type of medicine, over the counter or prescription, they do nothing for me. I took several different meds for headaches and they did no help. I also had back problems and any of the meds that I took for that did nothing for the pain.

I don't know if it has something to do with the meds that I'm on or if it's just me that doesn't make them work?

And also as COurt said the longer you take the med your body builds up a tolerance for it so you have to keep taking more or a stronger dose to keep it working. A lot of people become addicted to it because of this.

 

[cadsgj]

Interesting valeriedl. 5+/- years ago I had been taking 1600mg of tegretol per day and they dropped me down to 800mg. All was fine until this June when the seizures came back and just started going crazy. I am really hoping they will change my medication, carbamazepine (tegretol copy here in Canada) and clobazam, getting me free again from having seizures on a daily basis. Quite possibly the tegretol is not what causes my headaches, I only remember the headaches since I have been on tegretol... might have been having headaches before it, I just don't remember with certainty. Hmmm... now I am just thinking about it too much onder:

Oh well. My neurologist will tell me what he thinks next month

 

[valeriedl]

I want to let you know I was saying that you can become addicted to pain medicine if you take it for a long time cadsgj. I'm not sure if taking epilepsy meds does the same thing or not.

 

[C0urt]

people can get addicted to anything different.

some of the video clips are horrifying

 

[Chelsea]

Thanks to everyone for their very helpful feedback. I've been dealing the best I can. I tell myself to 'suck it up' when I have pain in my head. My RN friend suggested that maybe I can start a baby aspirin regime. Any thing is worth trying at this point. I'm not accustomed to intermittent pain. I've been blessed thus far in my life without any major accidents or surgeries. Thanks again, y'all. ***HUGS***

 

[Buddy's owner]

That's wonderful that you don't have any migraines with the increased dosage. I was just curious to see if anyone else had experienced the same side effect.

The MD said that I could take 600 mg ibuprofen every 6 hours for headache, but that has to do a number to the liver. Plus, if a person consistently takes medicine for a condition, the liver gets accustomed to metabolizing that specific medicine.

I hadn't experienced it as a side effect from tegretol thankfully. This was a few years back. I ill be off my tegretol in september.