[Fayemo]

Hi. It's my first day on this forum and I'm happy to be here, even though I'm not.

I was diagnosed with TN in April 2010 and have been on increasing levels of Tegretol since then. For the most part, it's managed my pain well and the side effects have been manageable. Last week I switched to XR and while it's working well (400mg three times a day) last night I noticed tiny red spots on my stomach and chest. This is one of those "call your doc right away" symptoms. I can't see my neuro until tomorrow but am seeing my primary later today. But he already said on the phone that I have to stop the Tegretol. Which feels impossible. I could not function before I was on it. I couldn't even swallow without massive pain.

So question one is - anyone familiar with the tiny red spots? And, can anyone tell me about making a quick switch between meds (like going from Tegretol to Neurontin) and how that works? I am very, very apprehensive about being without my Tegretol. Frustrating but true.

Question 2 is -any suggestions for docs in and around Boston who are experts at this? I like my neuro but she's super hard to access, especially when I'm having a problem.

Thanks, all.

FM

[Robyn6447]

Well the spots are an allergic reaction to the Tegretol being increased. You can be fine on a lower dose then when you increase it all of a sudden you have a reaction. Don't worry it's very common. Why you can be on a medication for years and one day wake up and BAM! you're allergic to it! As for switching to another it shouldn't be to much of a problem as long as the dosage is comparable to the Tegretol doasage you were on. I tried Tegretol years ago and my liver function test went thru the roof, I was put on neurontin and I had no problem changing and have been on it for several years. My doctor prescribed morphine for me for break-thru pain once and as soon as I took the second dose I broke out in a rash just on the right side of my body. You could have drawn a line it was that noticeable anyways doctor told me to stop taking it and switched me to dialdud and I've been fine with it ever since. So don't be surprised when your body reacts weirdly to some meds.. it's just you

[Fayemo]

Thanks, Robyn. That surprises and frustrates me about Tegretol but good to know that there's hope in switching from med to med. Saw my primary today and he thought the rash was "unimpressive." I see my neuro Saturday so we'll see.

Best -
Faye

[Doodle bug7]

When I took tegretol I broke out in big red spots that lasted a week. They were not like a rash as they were just big red spots. Right now I am taking 1200 mg. of Neurontin three times a day. When I first was diagnosed, I was taking 100mg. of Dylantin and 30mg. of Amytriptilene at bedtime. This small dose held me for TEN yrs. Then i had the big eruption. Bless, Dbug7

[fliplovestoeat]

hi
you should see the doctor that prescribed you the tegretol as a tegretol rash can lead to stevens-johnson syndrome.

I got a rash from tegretol an itchy one.
I am now on neurontin, if the rash continues please see your doctor

[fliplovestoeat]

i posted a reply and now can't see it ,so if i repeat myself that is why

you should see the doctor the prescribed you the tegretol as a tegretol rash can lead to stevens-johnson syndrome
I got a rash from tegretol with little red dots and itchy. I was taken off tegretol straight away and put on to neurontin

please see your doctor

[Robyn6447]

Oh yes, thank you for reminding me of that and letting her know. I was only on Tegretol a short time and I completely forgot the danger of the rash. I always chalk the memory problems up to Neurontin. Please check with your dr. about the rash they can advise you if it needs any further treatment/