I had a brain MRI done and the results came out fine.
My doctor prescribed tegretol to me. I don't take it everyday because of the way it makes me feel and it's horrible side effects. So, I'll take it during times I feel like my pain is really bad. The problem is that when I do take it....it doesn't make a difference. I wonder if this is because I need to take it consistently?
I remember one of the members here mentioning when she'll have a pain attack, she'll quickly take her meds. Unfortunately for me when I take my meds I dont feel a difference.
Whats my next step? When I speak to my neurologist about long term plans and possible some sort of solution...whats it gonna be?
Tegretol did the trick for me. I started on just 2oomgs a day increasing slowly to 600mgs and then found my attacks were under control, you may have to go higher to achieve this. I also took amitriptyline at night as I suffered not being able to sleep because of ache at the side of my face. I found i had to take the medication like clock work, for it to be in my system and then it could help.
Hi Saeeda, Take your medicine as prescribed. Do not free wheel. The medicine is not a pain killer and by that I mean an immediate pain killer like a narcotic. Best of luck.
You HAVE to be taking it consistently. This is not a pain med that you just take when you feel it coming on. I thought that at first too. I think you should talk to your doctor about a different medication. I could not take Tegretol AT ALL.... My doctor changed it to gabapentin and I am fine now.
Lisa I remember reading how much pain you were in recently, and now you have found some relief with Gabapentin, it is so encouraging to know things can improve with the correct medication for you.
I can only concur with all the replies here, I like Chris's term "free wheeling", not a good idea to do that. When I have been totally out of control with my pain it has always been at a time I took my meds when I thought it was needed. Now I listen to my neuro and do as she says, I am very well managed at present. You can never acclimate to the meds when you dip in and out, you will be in a permanent state of acclimating using the method you do. Nearly all meds settle down in their side effects after a few weeks. Some people here like Lisa do report they just cannot tolerate Teg, I can after a while but I feel better on Gabapentin. Others report just the opposite.I know this is hard for you with your studies and work, I do sympathize.
hi saeeda my mri came out fine too, and i just had a mra thats a look at the blood vessels and blood flow that a reg mri cant see, after that im gonna have a trigeminal protocal mri, thats a high resolution mri, getting that test on ground hog day feb 2 lol then seeing a doctor brown in great neck ny....meds make me feel like crap... need to find the right ones. its like a crap shoot and we are the dice :} hope you feel better soon,merry christmas and its nice to meet you.......dean
Yes, I read what everyone wrote below and you need to be on Tegretol as prescribed and don't take it as you feel like you need it. It has to build up to steady state blood levels in your body to work. Depending on the dosing and how fast or slow you titrate upward on the drug, it could take anywhere from one week to 3 months to get to steady state blood levels. Some people tolerate the drug well and some have to take it slower due to side effects. Hopefully, the medication will work for you. I can't take it because Tegretol can mess with white blood cell counts and I already have a problem with this. I tried Trileptal as an alternative, but it lowered my white blood cell counts, too. So, I had to quit. Tegretol can interact with many medications on the market. There is a Drug Interaction Checker on Google or ask your Pharmacist to run a drug interaction checker is you are on more than 3 medications, generally speaking. Many medications use the same site in the liver to be metabolized (3A4 isoenzyme) and they compete for this site. Some get knocked off and have to circulate in the blood stream until a 3A4 site becomes available. This can increase the blood levels of that drug that has to circulate. Tegretol can cause other meds to metabolize too quickly, therefore, there is too little in the blood stream causing the med not to work as well. Again, talk to your pharmacist. They have systems in their computers at the pharmacy to check for these things and contact your physician if they feel like they can make some dosing adjustments to make the meds work better and more tolerable for you. Tegretol can lower your Vitamin D and calcium levels. Tegretol, Trileptal, Neurontin (gabapentin) and Lyrica can all help with trigeminal nerve pain and they each have their side effects. It's just trial and error to find what suits your system. It's also recommended that you do not stop Tegretol cold turkey if you start taking it regularly. If you ever have to stop, your doctor can advise you on how to titrate slowly off the medication. My doctor told me that I would get more out of Tegretol if I took it with a high fat meal. If you are on oral contraceptives, it could lower the efficacy of the birth control so beware. Talk to your doctor if you are concerned. I am told when this drug works, it works really well. I hope it does helps you. If not, there are other medications to try for alternative long term plans.
I believe my doctors, regular and ER, and this forum told me that Carbamezapine takes time to build up in the system. What kind of horrible side effects were you having? Perhaps your dr would be able to prescribe something else if your. Having horrid side effects. Personally, I’m ready to check mystery diagnosis and concierge medicine out.
There are many other meds besides tegretol. I had to stop tegretol and neurontin quite soon due to liver effects. These are anti-seizure meds and yes you have to take them consistently for them to work. If your MRI came out fine, it means that you have type 2 or atypical TN, and that the MVD surgery would not work for you. If you are having unbearable side affects from anti-seizure meds, you can ask your Dr. to lower the dosage, change to another brand, add another medicine with the other brand such as a muscle relaxant, or you can bypass all those meds and groggy headedness and just ask him for strong pain medicine. There's a group here about opiates if you want to join and learn more about it. So many people mistakenly think they will be addicted. They have not learned the facts about severe pain, and the difference between dependence and addiction. I went off all the bad side affects meds that you have to take all the time, opted for opiate that I only take when the pain gets bad.
Hi Saeeda! I, too was prescribed tegretol but got so sick from it I had to stop - was sick at my stomach & felt like throwing up all the time! It was horrible for me so now I'm off of it & trying Lyrica & still on a low dose of Neurontin...Don't give up - I think we all feel like that from time to time when we can't get relief from the pain, but we are all here to support each other & help each other by sharing different things we have tried that have failed AND have been successful! Wishing you well! :)
