Hi there... thank you for getting back to me. I am planning on calling the dr as I have seen other side effects as well within the last few days. I thought I would give it a try first... but not now. I will let you know!! Be well!!
Nanooo48 said:
@hummingbird as far as I'm aware a skin rash is a serious side effect that should be reported to your dr right away so please do so. Tegretol works pretty well for me until it doesn't. As if the dose isn't strong enough anymore and only has been lasting about a week or so. Today I was just increased to 800mg. Please tell your dr.
Good morning I am on week 2 of Tegetol and Gabapetin - now 900 of tegetol and 300 gabapetin and first morning no real pain = let's see how day goes. MRI tomorrow.
Hi Mare -- I have contacted my dr and explained the rash, headaches and breakthrough pain. He is not in the office today but will be in tomorrow. Hoping for some help.
hi everyone first day on this support group
does the pain get worse is this true hard to eat for me sometimes
afraid i will loose my job
under attack ice calms it a liitle cant see a neurologist for about a months wait
scared my whole life is broken
Well my neurologist called me back and has put me on Lamotrigine - Chewable pills. We will see how this works for me. Last night I had my hair cut and wow, I needed to have the stylist stop a few times. This is so discouraging!!
Thank you again for your suggestion.
hummingbird said:
Hi Mare -- I have contacted my dr and explained the rash, headaches and breakthrough pain. He is not in the office today but will be in tomorrow. Hoping for some help.
Good morning I am on week 2 of Tegetol and Gabapetin - now 900 of tegetol and 300 gabapetin and first morning no real pain = let's see how day goes. MRI tomorrow.
Lamotrigine has been prescribed for me. We will see!!
hummingbird said:
Thank you for getting back to me. The more information I have the more educated I am. Have a good day!
Sandy said:
Hola. When I take Tegretol, it is an instant relief to my socks of pain in the lower right jaw. At times the pain moves around and i use lidocane.There are other meds that might work better for you if Tegretol doesn't seem to do it.
I use the epitol 200 milligrams, which is not a chewable. It will practically melt in my mouth, which is what I need because if Iām in pain on the right side of my jaw I cannot chew.
Yup, that was one of my big side effects. I went into my job (retail) a few days after going off it due to all the side effects scaring the crap out of my neurologist, thought it was out of my system, but I could barely function. I remember needing to grab another candle but I couldnāt for the life of me figure out what the words were so I could match it with the same fragrance. I knew they were words, just couldnāt figure out what they were. It was not a fun experience.
Hi I HAVE been using Tegretol since 2008. I have been losing words for a very long time.But I have multiple Sclerosis since 2006. It has saved me many years from running in front of a truck. I am taking 800 mg at the moment and have gone as high as 1200 mg. And still I moment of shock thru pain. I have no choice but to live with it I have lesions in the brain And boy is my balance off.
Hello! Iām pretty new myself. I have had sharp pains and horrible facial pain for about 5years now with the pain getting worse and lasting longer. I have found certain meds help control the worst of it so you can function. But my fears are the same as yours. Days when itās hurts to talk or it feel like someone is stabbing your eye so you canāt see I have a bleak look at my future. Then pain them will settle and Iām left with an ache that I am now use to and I can go on with my day. Every day is different. At the moment go day by day. Learn what meds work, figure out if certain foods/drinks cause a flare up. There are things to ease your pain to help enjoy your life. keep moving forward.
I was on Tegretol for 2 months and i was so amazingly frustrated because I couldnt find words. It was really hard at work and knowing what I wanted to stay but being completely unable to find the words to be able to do so. I finally got off the medication because i just couldnt do it anymore.
My mother who is 93yrs old was fully controlled after having a thermo
coagulation in 1998 then it started coming back in 2007. All the opiate drugs do NOTHING for TN nerve pain, whereas the ant epileptic drugs
do far more for TN. In January 2016 the Epilim stopped working and she has suffered for a year every day. She couldnt talk, chew, swallow, clean her teeth and nothing would stop the pain AT ALL. She stopped eating and drinking for 3 weeks, she was dying, when I found some Tegretol in the bottom drawer in her spare bathroom. I started off small, because this stuff is damaging if the body doesnt need it all, so I halved a 200mg tablet and gave her half in the morning and half at night, along with one epilim at night, within three days she had 100% success and started eating and drinking again and she has come back. Its a cow of a disease and Im sorry but hospital is the last place you should go, they know nothing about the disease at all. The nurses didnāt even know what it was, nor the Doctors, so how would one possibly give you relief if they dont even know what it is. They nearly killed Mum by putting her on a mixture of opiates that ended up making her incontinent and completely and disturbingly paranoid. I brought her home and nursed her and she slowly came back to normal. She can feel the pain in the background, but its not interferring with her life. But everyone is different and on different doses. Its a matter of playing around till you get it right for you. Good luck and keep hope there and PRAY
Yes to your question I have been in tegretol since my MVD 5 years ago symptoms have progressively gotten worse since surgery have an appointment with my neurosurgeon in April. My compression was from a very large petrosal vein. Not uncommon to have a reoccurring compression. I will definitely have surgery again.
I have an update on that. After the tegretol began its decline in pain relief I shifted her back onto epilim and then found through iherb a wonderful product that has no side effects with any drug, and it helps the pain 100%. Mum has been on 750mg of GABA three times a day, I must say that GABA is NOT gabapentin, it is a completely different product. I have also got her on a vitamin liquid which is like no other, its called HiVita, it contains vitamins, minerals, amino acids and herbs, therefore her nutrient level is high. Her total medications are unbelievably low with maximum impact. Sometimes when you change back to something you have already been successful with, it works again. So she is on :EPILIM 200g morning and night. GABA 750mg morning noon and night and HiVita three times a day. with 100% pain relief. Her head is not groggy, she is unbelievable and this has been for 3 months now. Im ecstatic. Please give the GABA a try and an overload of vitamins. Much love and healing to everyone with this dreadful disease.
See if you can switch to OXCarbazopene, It is better to tolerate and easier on the liver. Supposedly it is processed through your kidney. It works better for me.