i am currently waiting to get in with nuero surgeon but they said it will take three weeks at least to get me in and my pain seems to be getting worse by thr day. its to the point tears running down my face makes it worse. as well as blinking very hard, moving my neck the wrong way or to fast, opening my mouth very wide. the eletric shock gets so strong it feels like my jaw is wired shut. i am taking 600mg oxcarbazepine and baclofen as well as tramadol and steroids by iv each time i go into ER which has became a weekly visit. i dont feel like i van handle this pain much longer but i knew if anyone could possibly understand wanting to give up bc of the intense pain yall would. im not sure what i exspect yall to say but if you have any advice i am open to it. how do i stay syrong? been sick 6 yrs and then doing thr glorious tn stuff for close to a year and its all wearing me down.sorry for typos im on new phone.
{{{Victoria}}} Take it one day at a time. Slow yourself down and try to breathe. If you need to wait 3 weeks to see the neurosugeon, then take each of those days as they come. Looking at the big picture gets to be too scary! I wish I had magic words to make things better for you right now. The best I can say is that you need to hold on. There will be better days ahead!
Jenny
Yes, Victoria, three weeks seems like eternity now but please know you have some support here. Have you discussed upping your of carbamazepine? Many here taking 1200/ day in either two does or four smaller ones sound alike you are note being covered enough throughout the day. Also, have you ever paired it with gabapentin (neurotin)? That combination can slow down the shocks sometimes. Also heating pads. I’m no expert, just some suggestions to help get you through. There is always help, there is never nothing. You just have to find it. You will be okay.
Bellalarke
Victoria, I’m so sorry to hear of the pain you are going through. I do understand, it wears you down…
My advice would be to get on the phone with your neurologist or Doctor and emphasize that you are in a pain crisis!! You need to look at increasing your meds or adding something different to the mix to try and find relief from the pain. 600 mg is a relatively low dose.
PLEASE call your doctor ASAP to get better pain coverage. Don’t take no for an answer and really stress how awful it has been, mentioning your weekly ER visits.
Thinking of you, hope relief is around the corner.
((( hugs ))) Mimi xx
Sending positive thoughts and well-wishes your way sweetie! Maybe your carbamazepine needs to be raised. I had to keep going up til I got to 1200 because of the breakthrough pains being so bad. Now, I just have mild pain from time to time..........so far. If it gets worse again, I am going to have to go ahead and get the MVD because there is no way I can function on any more meds. I work full-time and I am a one-woman office so I HAVE to be able to function. Take care of you!
Victoria, please get back to us and let us know how you are doing. Did you follow Mimi’s advice? She is the go-to person around here. I hope you went to your family physician or the ER. Just, a line, anything, to let us know.
Bellalarke
When I called my nuero he said I Could go ahead and up my meds back to 800mg but thats all Hes willing to do other then tell me he has the ball rolling for me to See the surgeon. I am Also taking 50mg steroids and pain was not to bad until about 1. Then our of no where I was brought to my knees. Im just trying to take it easy and keep my mind busy so i dont think about how bad i feel. Thanx to u all for Your responses. Its so nice knowing there r others out there that understand!
900mg I mean.
Good to hear from you and also that you got even momentary relief. Your neuro sounds like he’s doing his job. Call him again if you feel you need to go to 1200. 900 might not be enough but it’s not good to take a big jump at once. Glad you’re hanging in.
Hi Victoria I agree with Mimi, don't give up. insist on seeing someone, don't go away until you do. Scream crisis, not eating, drinking, working because of it. For the shocking pains, I hugged my myself really tight and rocked slowly. It seemed to ease them. Three weeks is along time to put up with that pain, but one day at a time. Can you add morphine to what you are taking.? Please take care and stay strong, do things that make you happy.
Take care of you, big hugs
Linda
The only way I can get anything like morphine is by going to the ER. my nuero said he does not give narcotics. Lol makes me want to beat him in the face with something then give him tylenol for the pain. Lol
If your neuro won't write it, do you have a primary doctor who can at least write you Norco or Percocet? Or can they refer you to a pain management clinic?
My first neurologist wouldn't write pain meds and I ended up in the ER. I got in touch with my insurance and was assigned a case manager to assist me. She has been SO awesome. She told me to go to my primary care doctor. When my primary care didn't want to write more than one weeks worth of pills, my case manager called her and encouraged her to. She wrote them for enough to cover me till I got into the new neurologist.
I guess the insurance company wanted to keep me out of the ER. It might be worth it to call your insurance company and ask for help with this.
You can call - no appt. needed and ask gp or neuro for prescription lidocaine patches or lidocaine cream for breakthrough pain --- I was able to make it thru till surgery with them - thanks to this website!!!!
Keep Posting!
My gp wont give anything either. He just tells me the nuero is WHO I need to call. Yesterday was bad but not as bad as it has been so maybe upping my meds helped some. I will definitely try calling my insurance and see what they say.
Well I woke up at 4am hurting like crazy! I have so much pressure I want to scream. Anyways I guess if the pain dont subside ill be either upping my meds on up to 1200mg or be headed back to ER. :’( I’m so tired of being in pain!
I hope that either the pain subsided or you made it to the ER. It's not right to be in so much pain! There has to be someone who can help you find something to help when the pain gets to be too much.
Please let us know how it goes!
Jenny
I called nuero first thing this morning and asked for the lidocaine patches and the nurse was all “oh yea that may help huh” Wtf u think? Definitely glad to know I’ll be in someone’s hands soon that’s not so new to ATN!!! Ready for surgery!!!
Victoria , my neuro advises me to take extra meds when I get in crisis. If you’re on 900 now, just so you know, many take 1200. Jenny is right, you don’t need to suffer so much while waiting.
Maybe your doc will let you increase your oxcarbazepine. I would ask. sometimes you just have to increase. I have ended up on 1200mg tegretol because of breakthrough pain. It controls it much better that way, but it sure makes me tired and forgetful. I just decided that tired and forgetful was better than all that pain. Good luck! ((((((((((hugs))))))))))))
Just found out they are wanting to cancel my insurance which really freaks me out! Now what? I called the hospital my surgeons at to get an application for discounted insurance through them. I really hope I figure something out bc I called my lawyer this morning and he said it could be another 45 days before my disability starts.