My neurologist upped my baclofen, oxybarbazpine and pramipexole yesterday afternoon to try to get rid of my awful pain in my face. Baclofen now 20 mg/day 3 X day (up from 10 mg 3X day), oxycarbazine 600 mg 2 X day (up from 300 mg 2 X day) and pramipexole 1 mg/day 2 X day (up from 1.25 mg/day total). The good news is my pain is gone, the bad news is I have tremors in my hand that is BAD (I do have essential tremor, but not this bad), I am so dizzy I have to crawl on my hands and knees to get anywhere and I am barfing. Will these side effects eventually go away as I get used to these higher dosages? I see him again on Monday....I was in the ER Tuesday and got 3 doses of Diluadid that helped none...the last tme I had a bad flare up 1 dose helped me for 6 months!
Any help on these side effects and if/when they will go away would be appreciated.
Oh wow! Sorry I can't offer advice. I am not on that many meds. Just Tegretol 400mg twice a day. I would probably be crawling and barfing too if I was on that much. I hope someone can offer you advice. Good luck to you!
I wasn’t on near the dosage you are on, but I got sick on the tegretol. Rapid heart rate, severe headaches and anxiety. Couldn’t take it anymore. I don’t know the answers. When I’m having a flare, I can’t stand the paid… once the pain is gone, I hate the meds.
Was desperately sick with my meds, especially the 800mg tegretol a day. I had to come off it. Baclofen made me a nauseated for the first 3 days and for the next week I had to take an antisickness drug just before it . That helped me though I was also on Phenytoin. I had all sorts of side effects with my right hand developing a lump above the thumb and my hand pointed totally to the right. Lumps on my legs as well. If you get anything like this you must see your neurologist as I was toxic.I think I did not go up as quickly as that increasing 100 a week with tegretol . However the first day I saw himI was in such a state that they gave me 1000mg of Phenytoin intravenously then 400 the next day. I hope yours settle. I am dreadful with tablets and my vomiting did stop though it took me weeks. I am much better off the tegretol but still getting no sleep. I hope you get your meds sorted. Sickness is not at all nice, and constant nausea is worse.Regards to you and get well soon. Well, better soon Nx
Med Update! Nausea gone, can eat. Slightly dizzy when walking, no crawling anymore. Electrical shock pain gone, can touch nose and right orbital socket, only have pain on some chewing and moving right side of lip, so I guess increased meds are working. Thanks for all your posts and concern, I know they help much.
I started on gabapentin, went to oxcarbazepine and am now on lamotrigine (Lamictal). At this point I am pain free with 200mg every eight hours. I suffered in about the same way it seems all of us who have this condition suffer.
Gabapentin was a complete failure, oxcarbazepine provided relief, but for only about a week. Lamotrigine has thus far given me a complete cessation of pain. The problems associated with this medication are clearly explained in the paperwork I received with my original prescription, dizziness and a smack to my memory being the only two that I have noticed.
The treatment with this medication started at a very low dosage 25mg then to 50, 100, and now 200. It was also staggered so the transition from one level to the next was in steps. 25mg/3x daily, next week 50/1x and 25/2x, then to 50mg/3x etc until after several weeks I reached this level which is working fine. The reason behind this gradual buildup isn't obvious, but it is powerful and there are alarming side effects if not taken in this manner. The time of the build up is lengthy, over a couple of months in my case. The pain gradually diminished and I felt it wasn't going to work which is why I decided to have an operation
In fact I was scheduled for surgery last Thursday, three days ago, but on Monday my neurosurgeon asked me to "wait and see" just how well the medication was working. Although it took a relatively long time to become effective, and while the wait was agonizing, this medication has definitely stopped the pain.
I wasn't crawling on the floor, but I was climbing the walls. As a man I have never experienced pain to equal this condition, and I assure you I wouldn't write this to you if the pills didn't actually work.
Even though I felt the emptiness all of us must feel I am now able to live without desperation and I can only (and do) wish the same for you.