I just want to share my experience from Tegretol, I started by taking 300mg per day over and above my other TN meds. I unfortunately reacted very badly - it started by itching ( really really bad) followed by a rash all over my body, I ended up in the ER and got some allergy injection and meds. My Neuro told me to stop and I did for 2 days, he then said we should try a higher dose CR800mg per day, I didn't think this was a good idea but he reassured me since I had been treated for the allergic reaction. This was probably the worst decision the doc made and I do blame myself for listening to him. The side effects got worse and worse and a week ago he told me to just stop, I even asked him if just stopping like that was a good idea and he said yes. I stopped for a day and half, but then the next day I couldn't even open my mouth without getting a shock/attack, they had come back with a vengeance (it was excruciating) I then decided to get back on Tegretol and wean myself off over 3 days, I am happy to say I am off Tegretol but not suffering too many attacks.
I saw a new Neuro today who seemed to know a lot more about TN and treatments available. She diagnosed me with Steven Johnson disease, so I am going to be treated for that.This disease seems like something is eating your flesh, I look is really bad, I have also aged in a short space of time,my whole body skin has peeled off and my skin is now very sensitive, I cant even open a bottle of water coz of the pain.I back blotches all over my body especially on my hands and around my eyes.
Thats my story, I hope it will help someone, should they want to use Tegretol.
Daphne, I am so sorry for the nightmare of you having to deal with TN and SJS. I hear it is very difficult to deal with. I hope that your SJS is as a mild a case as possible!!! I know these words probably mean nothing compared to what you are having to deal with. I also know there are SJS support groups out there if you need one. I am thinking of you and am wishing you all the positive healing thoughts in the world! ((air hugs))!!!!!!
Hello Daphne,
I am so sad to hear about your ordeal. I will pray that you recover.
I knew all about SJS, as I had read up about it a long time ago. It’s always in the back of my mind, because I take Tegretol also.
Thinking of you, please stay strong
Sally xxx
I also had a Stevens Johnson reaction to tegretol..scary indeed. I had been on the tegretol for appro 2 weeks and started to notice my lips swelling called local neuro, they told couldn't possibly be from that refused to see me! and told me to continue taking it!!! thankfully I work for Dr's and when my tongue started swelling I knew I was in trouble..was given a Medrol pack. next day my lips and whole inside of mouth is now blistering..off to Mass General ER..indeed a form of Stevens Johnson, thankfully started the medrol pack in time, they also mentioned toxic epidermal necrosis, it was quite painful, along with the TN. what a combo!
That is so terrible.Im sorry you are having to deal with that.I had no idea Tegretol could cause something like that.It makes me feel awful and i always said it was terrible medicine.But i don't think i could do without it as it did rein in the TN pain.Good luck,prayers sent for you.
I am so sorry to hear about the Steven Johnson disease. It is a rare complication, but you are the 2nd person I have heard of this happening to. Did they tell what the treatment is for it? Is there a treatment or does it just have to run it's course? I am praying for you. I think we all understand the desperation that will drive us to do things, that looking back, were not the wisest. Go lightly on yourself. Thank-you for you willingness to share your story. Hugs.