OK..I'm brand new to the sight so I may ask a lot of questions..lol. I usually only get my severe outbreaks
In the winter time so a lot of the times during the summer I quit taking my meds. Unfortunately my pain is beginning now. I don't wanna get back on my meds because they are so life altering but will if I can't take anymore. I am on 2100 mlg of trileptal and 1500 mlg of neurontin daily and that doesn't always take care of it anyway. I checked into the surgery but they didn't think I was a good candidate. I just wonder what you all do to help manage your pain. And how many of you with tn also have Ms? Thanks
Its terrible usually the spring and fall people get their exaserbations. I go right thru fall to winter. Then it starts again in the Spring. I am sorry that you are not a canidate for surgery. I dont have MS, do have bilateral TN? The meds sometimes have to find which ones in combination work best for you. Its very individualized. What works for one person does not nescessarily work for someone else. You will need to ask your doctor and let him know if the meds are not working for you. Its such a unpredictable disease. Winters are the worst for me also. This one was the most difficult because I was recently diagnosed with right sided TN. I use a heating pad at nite to keep the cool breezes off my head, never leave the house without a hat and cover my face. I rarely go out during winter months, which depresses me but it is what it is. I do take alot of meds. Chewing triggers me also when its heavy with attacks I dont chew things that will trigger so,I will,eat soft foods. I know this sounds awful, but I do what helps me. I have become a human barometer, the pressures affect me also. You will figure it out for yourself and what works for you. Honestly there are plenty of times where I have no control over when the attacks come on or how to prevent them. TN is that way which is the difficult part of this disorder. Wish you the best and in my prayers.
I tried cymbalta and couldn’t even take one day of the side effects. It made me feel all speedy and like I was trying to crawl out of my skin. I HATE that feeling. No medical marijuana for us in Texas. We really like to jail people for that around here (most ridiculous thing ever). When I’m having a bad attack that my meds aren’t touching I try to go pay down in a dark room with either cool or warm (whatever works for you) on my head wherever I can get it without making the attack worse. Sometimes I try to meditate, sometes I watch mindless tv, and sometimes I just try to fall asleep if I can. Obviously this won’t work away from home. If I’m out of the house and it gets too bad I will actually go lay down in the car to ride it out. It’s a terrible way to live. Hence the 2 mvd’s trying to fix it!!!
I was great and pain free for 4 months from my first mvd. It took awhile to get on my feet, but my face pain was gone. I was even able to go to Home Depot, get plants and heavy bags of dirt and landscape my front yard. Things were pretty much back to normal, although I was still exhausted some days for no reason, and I was getting ready to re-enroll in school. Then the pain started to come back. Randomly at first, but by 6 months I was so bad I was living in my parent’s guest room because I needed so much help with my dogs and myself. My surgeon said what I already knew, which was that we weren’t going to see anything on imaging since we hasn’t seen the mess that was in there before the surgery, so he needed to go back in. He didn’t see that anything had really moved, but he moved the vein away from the nerve even more and used something to sort of “glue” the teflon pad in place and then he “rubbed” the nerve to make it “reset”. He said it seems counterintuitive to get the nerve all riled up like that but it was my best bet. So now my pain is even worse than before surgery and I’m just doing what I can to try to control it while I wait for the nerve to calm down. It could take up to a year for that to happen, so I sold my house and moved in with my parents.
Hopefully your mvd will go smoothly and you will wake up pain free and it will stick!
I know some of the people on here talk about a topical cream with lidocaine and ketamine in it that helps. I imagine the effects are very different if smoked or ingested than when you put it on your face though. Even if pot were legal here I can’t smoke it. It makes me too paranoid. Completely undoes any benificial effects I may get from it. That’s funny how many dispenceries there are there though! I guess if you need that sort of thing post op it’s close at least lol
Really, I do wish you the best of luck with your mvd. Even though my issues sound scary, I would still choose to do the mvd again even knowing what I know now. I got 4 months with no face pain, and I’m still hopeful that when this nerve heals I will have a loooooong remission and be able to get back in shape and back to my life!
Like she said, the heating pad. I actually use a Mother Earth bag and use it on and off. Once it cools down, I leave it off for awhile then heat it back up in the microwave. I tried an ice bag recently and that made things worse, but I do know it helps some people. I try really hard not to go outside except when I have to. I am not a candidate for MVD so I haven't had one. I can't go without meds and do not have a day without pain. I do use some Lidoderm patches sometimes. They are cold but numb things after awhile. You can cut them up to fit the area needed numbing. You need a prescription for them. I hope you can get things under control!
I went to 3,600 gabapentin (900x4/day) in Janurary from 2,700 and my neurologist added trileptal in March which I am going up on slowly. I needed to cut back on the afternoon to 600 because I felt like a boat adrift. I take 37.5 of tramadol with that and it takes the edge off and leaves me more lucid (which is still not much like my old self). I’ve also added nortriptyline and still only at 10mg. If I need to be out and about in my car shopping, doing errands, and am traveling, I take more tramadol a little ahead of time and again, it keeps me going until I can come home and crash.
When I am in a big flare I simply need to not speak, or speak as little as possible, and stay quiet for a day or two with little stimulation. The pain actually does settle to tolerable. This is how I cope. I used to wish for it to go away completely but now I am pleased when it is not blaring. That’s a reality I never could have imagined but it’s truly my reality now. I do have moments or even whole days of feeling hopeless, especially in the evenings and at night. I am so sorry you are feeling hopeless now. Maybe tomorrow you won’t feel so hopeless, or the day after that. Sometimes hope is learning a new strategy to deal with the pain. I hope you are feeling better soon.
Peace and kindness
Pppppppplease get a second opinion from a reputable neurosurgeon with much TN experience. I hope you are not just basing this on one doctor's opinion. If a 2nd TN renowned specialist says not a good candidate - then time to look for something else.
You are on very high doses of meds---- I was able to lower my meds some with prescription lidocaine patches/cream to put on my face - much relief without that druggy feeling!
I agree. 2nd opinion with a neurosurgeon you know does lots and lots of mvd’s would be a great idea. Many neurologists will never see a case of tn in their entire careers. It’s a pretty rare condition. What area are you in? Maybe someone here can recommend a doc in your area? Any good doctor will welcome a second opinion. If they don’t like it, they are letting their own ego get in the way of patient care and should be fired immediately IMO.
Well I do a lot of all of this. I think I will get a second opinion. There must be something they can do. I have seen 3 neurosurgeons in the past years and no one helps :-( the meds are so life altering and don't always help and it is hard to care for my kids when taking it. Right now the attacks are not too severe and I can take a neurontin when it starts and it numbs it about 70%. Ive had this for 6 years and I can't imagine living this way the rest of my life:-( I'm only 34. I don't know anyone else with this disorder and it gets very lonely. I know my poor hubby gets tired of hearing about it. The face cream sounds amazing!!!! I've never heard of that!