Hi everyone. Merry Christmas. I’ve been taking 1000 -1200 my of tegretol for a couple of months now, it rose steadily from 0 in February this year. It’s been ok but I’ve had a couple of mornings with extreme dizziness so I thought I may be taking too much. I’ve just tried to drop the dose a little to 1000 mg but this brought on pain attacks and I’ve just had a really bad migraine (?) like attack for a couple of hours. Not sure if this is normal ( if anything is ‘normal’ with this awful condition.
I can't answer your question, but I'm starting to think like you...nothing is normal with this condition! (I do think that I would discuss any med changes with your doctor first though.)
Hi AG, its really important to titrate up and down on these meds, and best to do it with the support of your medical/neuro team. May be worth contacting your doctor and checking with them, if they're not available then maybe your local ER department. Hope this helps. :)
When I first started Tegretol, every 100mg rise gave me extreme headaches. It took me weeks just to get to the 800mg I've been on for the last 3 years. Now if I miss out on any the headache comes back. So yes it's "normal" with Tegretol I would say. Just increase the doseage SLOWLY until your body gets used to it.
Thanks guys. The ironic thing is that I’m doing exactly what my neurologist said to do- move up and down the tegretol as the pain increased/decreased. After getting up to1800 mg/day to manage the pain I started to try 1600 then 1400. The GPN pain was still ok but I got this really rough migraine. That’s stopped after a nights sleep but even more ironically flashing GPN pain started. So I’ll slowly wind up the tegretol and see what happens.
Hi A G,
I work closely with the TNA and I am a support group leader for the Long Island territory. We have guest speakers come and the group is amazing. We all support each other and offer advice as much as we can. Take a look at our last meetings speaker! Let me know if this helps. https://www.youtube.com/watch?v=ReO4hT1ifUQ
Best,
Jasmin