I am really sad right now. I was doing so well for a few weeks with NO pain.......not even breakthroughs. My face felt normal........no tingly/burny feelings in my cheek, no tightness in my jaw. Then BAM, out of the blue, it starts happening again. It was worse this time I think. It only happens in the evening and night. The pains are like an electric ice pick that is stabbing & shocking at the same time............and it's VERY fast in succession this time. Kind of like as fast as a sewing machine needle. During my initial pains before my diagnosis, it would be a very LONG stab/shock that I could try to breathe through. I can't even get a grasp on these. I DO get a few minor ones here and there throughout the day, but the worst is evening and night. I went back to my family doc and when she walked in the room, I just broke down crying because I had been sitting up late at night with the pains, then having to work all day. We upped my meds to 600 tegretol twice a day. I can't function like that so I have split the doses into 3 times a day. I am still having some breakthrough and don't know what to think about it. Maybe we need to add another med to the tegretol. Maybe I need to go to a neurologist. It's just really busy this time of year for me at work, so I am trying to hold off another 3 months if I can. I have to sit straight up to sleep. I think the trigger was that I had been sick and coughing so hard and so much. I still have a little coughing, so hopefully I can sleep normal after I get completely over the coughing. I will NEVER make the mistake of not going to the doc for coughing again! I just needed to vent..........thanks for "listening".
Boy, wish we were together , we could tell each other all our woes. Sometimes that helps alot. I too feel sad. No xmas tree or presents, just stocking stuffers, I had a little time to walk downtown before my neurologist appt today and could not get interested in anything ( I was looking for a particular knitted scarf), but even thoue ornaments and glitter did not intice me. I half decorated my house, the rest the stuff, I'm putting away, maybe giving away. I just want to pull the covers up over my head ( after medication for the evening of course).. k
(( Donna )),
I’m so sorry your struggling with this pain AND working… It’s so difficult.
Have you been taking the new dose for very long? It can take some time before your body adjusts…I’ve been on Tegretol CR ( slow release) for the longest time, and with each increase it would take me at least 5 to 10 days to feel the difference. But that’s me.
I too take my meds 3x a day, and although I’m on 3 different meds now, I still do not have adequate relief…I’m heavily medicated, feeling the wrath of numerous side effects and frustrated.
I would request an appointment with a neurologist, have you seen one yet? Try and find one who understands TN. ( easier said than done ) it can usually take 3 months to get an appointment with a neuro, so request now…
Baclofen is often prescribed as a booster to aid Tegretol in working, maybe a suggestion for your doctor?
Vent away my friend, we all understand…
I hope you feel better soon with the coughing…and that your pain starts to dissipate with the increase in Tegretol…
Huge (((( hugs ))))
Thanks Mimi and kg! I have been on tegretol cr for a while, but the increased dose I have only been on about a week. Maybe I will see a difference soon. There is a neuro right in Memphis not far from me who deals with TN, so that is a blessing. My family doc already has his name to refer me if needed. :-)
Hi Donna, I don’t want to sound pushy at all, but I think you should get the referral in…a second opinion is always a good thing, many neuro’s have some experience with TN and different med solutions…just in case the Tegretol isn’t working…
I’m at 1600mg Tegretol cr, 60mg Baclofen and just started a baby dose of 60 mg Dilantin to be increased as needed…I’m hoping it kicks in soon.
Whatever you do, I’ll be sending positive thoughts that you find relief soon.
(( hugs )) Mimi
Thanks Mimi. I will call my family doc and let them know I am still having some breakthrough and see if I can get a referral to the neuro I found out about. I just have to find time that I can take off. I have end-of-year stuff to do plus we get busy this time of year. (I work for a propane company) If I can get the referral, maybe I can go by the end of Jan. or so cuz I should have my end-of-year stuff done by then. No, I don't think you're being pushy....just trying to help me. HUGS BACK TO YA!
im so sorry girl i know what u going to threw i get my pain in the morning like crazy
dr giving me thre kinds of pill three times a day i cant do much i have to quite my job
because i coulnt make it on time im alway hurting i get scared to sleep omg!! i cant blow my nose is my problem