Hi there.....first attack was misdiagnosed two years ago. Now IT is back on the other side of my face. I now have the constant pain and the shooting attacks. I have had to go on temporary disability from my job. My partner and my kids are getting sick of me....I can't talk, eat, work, etc...can hardly brush my teeth...am on dilantin and cymbalta and dr. said MVD is next. I get some relief from the pills but they turn me into a zombie and I just lay here wondering what will come next.....I am not a fan of surgery but right now I am ready to do it myself. How do I keep going like this? I have no quality of life...people are pissed off because I don't talk or smile...I tell them it HURTS and they just don't get it...I feel so completely alone and lost right now. AM I ever going to get well?
First of all, I am SO SORRY you are dealing with this monster! Are you seeing a Neurologist? I was told by mine that Cymbalta doesn't really help many people with TN. My brother takes it for Diabetic Neuropathy, but that is completely different. My Neurologist went through many meds before finding one that made it "tolerable" but I still cannot work, I am sorry to say. However, you may find a cocktail that works better for you. If you need to today, go to an Emergency Room and get some relief.
Secondly, there is a writeup that I found on another site to give to your husband. It is at the top of the Discussions. There are some marked something that makes them stay there and it is at the bottom of that list. It does a not job of explaining what we are going through. My husband read it and went to the Neurologist with me and does understand. Sometimes I feel I am getting on his nerves but I think he is shutting himself off because he cannot help me. . sometimes a man thing. Ok, read it and print it for him now. Let me know your thoughts. And try heat on your face and see if it calms things down. . heated towel or something.
Hugs and prayers,
They are called Featured Discussions. There is one title: 10 Things to do when in TN Pain or something similiar.
Also the one I added is called: A writeup about Caring For Someone with Trigeminal Neuralgia
Please let us know how you are doing.
Thanks Debbie. I have been to the ER more than once...they practically sedate me since nothing seems to stop the pain. How long have you been sick? I do get some relief from heat and ice, but I am SO tired of it all. I feel like I am not even alive anymore...just a drugged up body in pain. I am on the third round of "lets try this med"...
I didn't see you on IM ealier. I just responded thinking it was now. It doesn't pop up so I don't see it. . .
I have been sick for almost 3 years. I know it is frustrating, but I went through MANY MANY rounds of trying different meds and will probably try more. I remember going to work and being in a training class and basically going into a coma from meds. And then I would have days of double vision and my husband would have to come get me. I was only working part-time at that point. I've worked with my doctor to determine how to spread out my meds so I don't sleep ALL day, but do have to sleep a good part of it. I just need a little coherent time to do some things.
Right now, try to focus on feeling better now. What will it take to "control" the pain. Then, hang in there and see if the side-effects wear off a little. If not, try to figure out if you can lower the med a little or spread it out during the day so you are zombied all day. Maybe, you can switch one of the meds to something similare that doesn't have as strong of effects.
As far as specific meds go, have you tried Lamictal as a secondary medication? That worked well for me, but I couldn't handle the side effects. You can Google all of the meds out there and manage what you want with your doc, but maybe Cymbalta isn't a good choice for secondary. It caused me to get very depressed, too. Now, my brother LOVES Cymbalta but takes it for Diabetes. Just things to think about. You can add a Discussion and ask folks here what medications they take that are working for them. Take it to your doc and discuss it. Can't hurt. If your doctor isn't agreeable with this, move on.
You are in the right place to get other people's experiences with things. Of course, no one here is going to give you medical advice but you can see what works/doesn't work for them. This is a wonderful group of people, this is just a slow morning. Hang in there, we are here for you!
We understand here, but I know what you mean by others who can't. Keep this in mind--it isn't that they don't understand--they can't realize how awful TN is. If I am having a bad day, I tell people I have a really bad toothache and my face hurts. I read Debbie's response, and I agree with her. There are other meds that may work better for you. It is very frustrating for us to have to wade through the medical red tape and endure pain while we try to find the right doctor and the right combination of medication. BUT most of us have found something that works and you will, too. Why does your doc think MVD would help? Have you had an MRI that shows nerve compression?
I am so sorry you feel so alone. I am so fortunate to have a saint of a husband who goes with me to the doctors and reads all the material I put in front of him. Have you read the book, Striking Back? It is very helpful.
I hope you find relief soon and continue to reach out to those of us who know what you are going through.