I am a graduate student because all I want to do is be a Science Teacher. I have missed TWO weeks of work trying to adjust to tegretol but I just can't do it. I am potentially allergic to it and the side effects are just too intense for me. I can't drive, I can't think, I can't do the things I NEED to do.
So what are my options? I maxed out on gabapentin. I can try trileptal, but I might be allergic to it since I am allergic to tegretol. Baclofen is my other option. A muscle relaxant to take with gabapentin.
How can I finish student teaching on a muscle relaxant?!
I feel like everything I've worked for is slipping through my fingertips.
This posts asks the questions we wonder all the time. My fiancé runs his own business & also has bad reaction to tegratol. This TN stuff is so frustrating for him too as he is normally a very hard worker but has been laid up for a couple months. He just wants to be able to do the normal things again. He is just newly diagnosed so still trying to figure out what works. This site is amazing & I thank you for your post. I always show him peoples post & try find relatable people & subjects to show him until he figures the site out in his own
Obviously you are young, I was 25 when my first TN attack occurred. For 8 yrs I suffered and it got worse each and every year. Had tooth pulled...went the tegretol route to the max dosage...tried dental implants....probably saw 8-10 doctors. At age 33 I found a Dr who knew what I had based on my description and he did my MVD surgery. I have been totally pain free for 30 yrs and have been blessed to get back my life. If I had to do it all over again and if I had found that DR earlier I would have had the surgery done much much sooner. MVD is the only way to have a chance at fixing the cause of the problem. Have you had an MRI yet? Have they seen any compressions? It is a very big decision and shouldnt be jumped into without you being fully educated but I would talk to a high quality neurosurgeon who has extensive experience in treating someone with TN. The younger you are when you get the surgery the better the outcome odds are. Best of luck to you
My comments echo Ed's below. I suffered for over 6 years with TN. I finally had the mri/mra done that confirmed that the TN was compressed by an artery. I did a lot of research and found an excellent neuro surgeon in LA at Cedar Sinai Hospital. I had the procedure done 4 months ago and have done very well. I got off of the tegretol immediately and have been pain free. I would not wait and suffer thru this condition for one minute more but as Ed mentioned do your research and find someone who is very familiar with this condition and who comes highly recommended. There is hope!
I've had TN for about 7 years, with the typical periods of flare-ups and dormant times. Medication has always seemed to control it (except for that one 10 month period.... unless it is just going into remission on its own, who really knows). I am way too scared of the surgery option. Also, my past MRIs haven't shown any compression. I had another one done on Monday and my Neurologist has yet to get back to me. The results were supposed to be made available to her within 2 hours, so I am assuming her silence means another clean scan (I did inquire with her office to no response).
This is all to say... I have no idea! We will see what time brings. I appreciate the input :).
Its very sad to have everything you thought you knew turned upside down by something beyond your control. I try and tell people this and they say things like, "if u think ur sick then u r sick." How dumb is that? If u're sick u're sick and thats all there is to it. The doc wanted to put me on tegretol but I refused because of the horror stories about side effects. I take gabapentin, hrdrocodone, and ampatrilyine and thats bad enough. I'm a police officer so I have to be careful, but even these meds are making it tough to work sometimes, and on the bad days I can't work at all. I can't even place my head on a pillow without wanting to scream.
So, I've decided to go with the MVD. I've researched it, read others stories about it, and after talking to the doc about it, I feel this is my best hope. Do ur homework, make a fully informed decision, and then push hard for it. Good luck, good days, more smiles than frowns
Just wanted to make sure that you are aware in most cases you will get an MRI that shows no compression. That is the typical MRI result. I understand your fear of the surgery and your apprehension but unfortunately there is a reason you are getting the TN pain and it doesnt fix itself or go into remission. The medications all have such bad side affects and can be very dangerous to your body over an extended period of time. All of us who have had MVD were scared its natural to be scared but it is the only way to fix the root of the problem. The surgery is a very personal decision to make in my case I knew I could not live the rest of my life, at age 33, with TN. I urge you to really educate yourself on all the options including MVD and discuss them with a highly qualified TN surgeon and I mean highly qualified. Good luck and God Bless
I know the feeling. Have you tried just nortriptyline or amatriptaline? I am currently on nortriptyline and am having very little breakthrough pain and can function fine. I also use klonopin but only use that at night. The only side effect I am having is weight gain. But if you could try it and it works you can continue with your life, a little more weight on you and you can always go back to the others, if it doesn't work.
I hear you. The 300 mg of gabapentin KNOCK ME OUT and I have yet to touch school today. I am obviously not taking them tomorrow at school or while driving. I am so sorry you are having a hard time finding the right combination of meds lately. That is something I worry about in the future.
How long is the student teaching for and how is it going on the muscle relaxer? I hope you are able to continue with schooling. I understand what you mean about everything you have worked for is slipping through your fingers. I don't know how I'm supposed to finish school like this, and forget about getting through clinicals. Then what about when I'm a nurse?
Ed, thank you for the advice. I did not know that most MRI's don't show compressions. MVD's are starting to sound more and more appealing lately.
tkal- I have tried amatriptaline and it makes me more of a zombie than anything I have ever taken... like zero personality too. I am so glad you are finding success with nortiptyline.
studentNpain- My student teaching is actually a one year internship. I decided I needed to take an incomplete for this semester and just stay at home to adjust to the Baclofen. I am at 10mg 3x a day right now but am having pretty terrible breakthrough pain (on top of 2700mg of gabapentin a day). My Dr. says the goal baclofen dose is 20mg 3x a day, but I still have to work up to that. It makes me pretty darn drowsy. The good news for you I think is that the gabapentin is working at the current dose, right?? Hopefully the sleepiness side effect will wear off as you adjust to the drug and you can get right back to your grad school! In the meantime we are all here for each other; for questions, support, and stories.
Yes, the current dose is working at the moment. I’d definitely look into getting a FIESTA MRI if it’s possible. They’re supposed to be the gold standard for seeing the compression. My MRI with contrast came back normal also. I don’t know what I think about the MVD surgery right now.