Hi! I gave in and decided to try another medication since the pain was stopping me from living a full life. I went to a new Head Ache clinic hoping they had an alternative to medication as I had heard that Botox had worked in some small studies. I have tried other medications in the past but hated the side effects. Well no luck with a new alternative being offered so I left with a new prescription for Oxcarbazepine which I had never tried before. After two weeks on the medication I had a day last week where I could hardly stay awake during the day and felt like a zombie. I haven't been able to concentrate at my job, I don't dare drive my car, I get easily tired when I try to work out, ( I used to be an indurance athlete so I definitely know the difference), I need at least one nap a a day and usually need two, I am in bed by eight pm and I have been trying to shed a few pounds but I think my efforts have just kept me from gaining. My most disturbing side affect though is depression. Last Friday I just cried all day. I started the meds to help me live life and instead I am stuck in the house even more so as I don't have the energy or the mental capacity to go anywhere. On top of that I am so down I just don't want to be around anyone. Has anyone had the same side effects? Do you ever get used to it? I missed my morning dose yesterday so that I could go out and take my dogs to the park ( I had to drive there) but I paid for it with attacks that lasted for hours when I came home as it was cold and windy out. I really don't know what to do. I hate the pain but I need to be alert to work and the depression scares me. Has anyone had any luck with Botox?
I went to a migraine clinic in Boston this week . I saw Dr Mathews at Faulkner Hospital assoc with Brigham and Womens in Boston. They put me on Topiramate an anticonvssant. I have to trial it for three months. I started on low dose daily and increase after a week if it does not work. I already am feeling relief. He told me to take Naproysen (Alleve) 500 mg at first sign of HA if it does not help take Relpax. I should only use these 15 days a month. Call if doesnt work. I have to do a diary. So far I have less headache daily . I feel like I came out of a cave. made me a little jumpy. Did your doc offer you anything else?
I had the exact same reaction to this medication. The difference was that I was in so much pain, it was the only thing that began to lesson it, I could not drive due to the pain and pain medications I was on anyway, so sleeping was most welcome at the time. My nuerologist did tell me that the side effects go away after about 6-8 weeks. And they did.
It sounds like your initial dose is too high - you should see how much you can lower it to function better. Ask your doctor for lidocaine patches to put on face - MUCH pain relief for me and some others here.
I asked my doctor for ritalin - so I could focus and have enery - I only took it as needed on days where I really HAD to accomplish things.
Then I hated the drug so much - I went and researched and got surgery -- 14 months pain free : )
I am on carbamazepine, which is a relative your med. I am tired a lot too. But sometimes I have trouble sleeping. Does that make any sense? Sometimes I can pass out and sleep really good, and other times I sleep restlessly and have trouble falling asleep. It is so weird.
Donna, I'm the same on carbamazepine. I'm on 1000mg of that and 600mg Gabapentin. Every night I "pass out" - some nights I sleep like in a coma all night, and other nights I wake and cannot get back to sleep for hours, am really restless and wide awake. It is very weird! It does take a while for your system to get used to the meds - I functioned fine on 1000mg of Tegretol, but adding the Gabapentin recently has turned me into a sleepy, double visioned zombie! I am awaiting my body to get used to it!!
Hi Sheila. Sorry to hear you're suffering with bad side effects from the Oxcarb. I'm not sure what dose you're taking currently? I was just like you when I started taking it (on 300 mg, 3 times a day), very drowsy, 'drunk feeling', headachy, no concentration, the works. It took me a while to figure it out, as they say it has less side effects than Carbamazepine, and it does once you get used to it. I went back to my GP and said I felt it was far too strong for me, and could I try half the dose, ie 150 mg 3 times daily instead. She agreed and that's what I took instead. This didn't completely control my pain, so when I saw my neurologist he suggested combining this dose along with 50 mg Lyrica, 3 times daily too. I've been on this combination for quite some time now, and it works for me. I'm LOADS BETTER on this. I do have the occasional day when pain breaks through, but on the whole I can function much better (clearer thinking and not too sleepy). I had tried the Lyrica previously, but again the usual dose was too strong for me, but the 50 mg added in really helps me. If you look back at my previous posts you'll see that I posted one very similar to you about side effects of Oxcarb.
If I can be of help in any way please message me. I hope you start to feel better in yourself soon. Best wishes,
Hi Sheila, Have just been put on Oxcar... Last Tuesday. From Tuesday to Friday I wanted to throw up had a constant headache (one to die for and almost as bad as TN). Then on Saturday I started feeling better and Saturday and Sunday I felt human again for the first time in 5 years. Perhaps they started you on too high a dosage. You need to be "weaned" onto it. I am now less tired than I have ever been and have energy whereas I NEVER had energy. Check with your neuro or doctor and see if they can lessen the dose and then increase later. Maybe it is just one of those meds that don't work for you. Tegretol eg made me violently ill whereas it works wonders for a lot of people. But if Oxcar works it really is great. I was gardening this morning. Have not been in the garden for 10 yes 10 years.
I also use Milk Thistle to support my liver to help it cope with all the meds I am.
HI! Thanks for the input. No one here has mentioned depression which is the side affect that I am most concerned about. I could stay with it in hopes that I feel more alert after getting used to it but I am not sure if the depression will go away and it scares me. I am on a low dose right now only 150 mg twice a day but i am supposed to be increasing it each week.
I agree with the above. I have been on Oxcar... for two weeks now. I am newly diagnosed so this is my first time on medicine. The doctor said that this is a good first med because the side effects are fewer than other meds. Initially I was put on 2 150mg doses and the doctor said that I could add a 3rd in a few days if I needed it. I definitely needed it. So now I take 150mg 3 times a day (about 8 hrs apart from each dose). The first few days, I had bad nausea. The pharmicist sold me an over counter anti-nausea medicine that worked like a charm and advised me to eat some food with each dose. I also had a little jumpy/double vision, dizziness and very tired. All that went away after several days and now just the tiredness remains but even that is getting better day by day. I work out regularly (spin, run, weights, etc.) and I've always maintained and know from my own experience that exercise gives you energy. This habit has really helped me get through the tiredness and I'm starting to feel almost normal from that. I've also noticed that I'm a little more forgetful now.
The medicine is not perfect. I would say that it controls most of the pain most of the time. When I do have pain, it's not close to what the pain was in my first few days with no meds, waiting to see the dr. I can handle it, especially if I distract myself. I've had a couple of times when the pain was maybe a 5 on that 1-10 scale, which is a little more difficult to handle. I have a prescription of vicodin that I have taken once for this. It doesn't touch the pain but for a couple of hours, I don't care about it much so it get's me through those little places. I can't stand the fact I'm on meds so I would rather have a small amount of pain than add more drug if I can. I'm already researching having an MVD and I plan to have one this year so I can solve the problem and hopefully not have to be on the meds. It just seems like the right option for me.
Do talk to your Dr. about lowering your dose and easing into the med. These are strong drugs with a long list of side effects. Hard on the body so easing on and off them is probably best.
Thanks, Sheila, for your suggest on Milk Thistle. I'm going to head to my whole foods store today to get that supplement. I'm also going to look for one to help my kidneys as I know these drugs are not good for your kidneys either. I was told that drinking a ton or water with lemon is good for your kidneys.
Gen, I am on 1200 of it daily. They had me take it in 2 doses but I couldn't function that way. I had to split it into 3 doses and it helps me function better.
Gen said:
Donna, I'm the same on carbamazepine. I'm on 1000mg of that and 600mg Gabapentin. Every night I "pass out" - some nights I sleep like in a coma all night, and other nights I wake and cannot get back to sleep for hours, am really restless and wide awake. It is very weird! It does take a while for your system to get used to the meds - I functioned fine on 1000mg of Tegretol, but adding the Gabapentin recently has turned me into a sleepy, double visioned zombie! I am awaiting my body to get used to it!!
It has not caused depression with me. It had the opposite effect, feeling uppy so suggest you take KC's advice.
Sheila said:
HI! Thanks for the input. No one here has mentioned depression which is the side affect that I am most concerned about. I could stay with it in hopes that I feel more alert after getting used to it but I am not sure if the depression will go away and it scares me. I am on a low dose right now only 150 mg twice a day but i am supposed to be increasing it each week.