Scared, in excruciating pain

Been living with this awful disease for nine years, I’m 27. Was always manageable but I never took well to tegretol. Made me feel like I was going insane. My TN went crazy on Friday. Literally couldn’t move. I’ve been out of work since. On 1200 mg of tegretol and 1800 mg gabapentin. Not doing anything! My doctor is incompetent and doesn’t believe I’m still in pain. I almost had to force him to refer me to a neurosurgeon and of course they haven’t called yet. I’m bedridden and miserable. Can barely eat and the meds are making me feel like a zombie! This is miserable.


I'm so sorry you're going through this. While I can't fix it for you, I can walk by your side. I'm in the middle of my worst attack yet, but nothing like what you're dealing with. So I know the fear you're feeling.

Reach out as often as you need to. I'll metaphysically hold your hand, and you can squeeze it as hard as you want. I've included a glamour shot, so you can see what I look like.

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Hi Stephanie,

i hope you are feeling a bit better, Im sorry you are suffering so much. Try not to despair too much, you can do this and get through it, it will ease up, even if its just slightly. It is incredibly scary having this much pain, you would never have believed previously that you could take so much. I hope you find a better Dr who is willing or able to help in some way. Is there any possiblity of any surgical treatments? I had MVD in october, its not gone away but its considerably better and im able to function something like a normal human being, its pretty wonderful so far! it did make me cry again for the first time since my op the other day but that was a small blip and blew over quickly. I hope you are feeling a bit better. sending happy thoughts your way

Have you been taking Tegretol consistently since you were 18? And it was managing the pain just fine for the last 9 years?

Did you have to increase the dosage over the years or has it been fairly steady?

A lot of times, doctors will switch up your medicine when this happens. Sometimes it helps to cycle on and off primary/secondary medication for this.

Thank y’all so much!! I have been at doctors offices every day since Tuesday. They scheduled me for MVD next Thursday. I’m terrified but hoping it will fix the problem. Thank you Beth for your kind words! Knowpain, I have taken 200-600mg since 18. It has been decreasing in effecy for the past year. On Friday 2-5 the pain became excruciating. I am now taking 1400 mg tegretol, 3600 gabapentin and Percosets. Borris I am hoping surgery will completed take away the pain. I am glad you are doing okay though!

That’s great news Stephanie. I’m so happy for you, I hope and pray that your op next week brings some real relief for you. It hasn’t completely taken mine away but I wouldn’t think twice before doing it again, the difference is remarkable. I have only had this for under 3 years and was at my wits end, I can’t imagine having this since you were 18, any relief at this point now could potentially be a life changing experience for you. I will have everything crossed that within the next month you will be a different person almost. Keep us informed how you are doing. All the best.

Having a community to reach out to, like LivingwithTN and others, can be enormously helpful. For us, faith has also played a tremendous role; we've been strengthened, been given relief when most needed, and found solutions that have been very helpful that we would not have found otherwise.I pray your MVD goes well. MVD worked for us for a while, and we are very grateful for it. Our search continues now. Some things we've been led to try are having a very positive effect, and we have a long list of others we continue to look at as well. None of us know how long our journeys will be or where they will take us, but so long as we keep asking questions, the door to healing remains open.

Hi stephanie,

are you still on for your MVD tomorrow? I hope everything goes smoothly, my op and initial recovery was fine, after a couple of weeks you will (hopefully!) feel better than you can remember. Let us know how it goes. I will have everything crossed. best wishes