have been suffering with this now since start of october last year, not long in the grand scheme of things and compared to some of you on here. in that time i had 2 - 3 weeks of continuous break through pain every day that left me crying and shaking, maybe 2 or 3 times a day. since then it seemed to be settling down and i was hopeful that i was going to enter a period of remission. my remission has been for about 3 weeks during which time i had maybe a dozen or more fairly mild flashes of pain, that was bearable. since then it has steadily increased in frequency and severity, im currently taking 150mg of pregablin (lyrica) twice a day and 30mg zomorph twice a day. i have constant ear/teeth/jaw/eye/cheek ache, all day every day. not to severe more of a nuisance, i can manage with that. however i am also getting flashes of pain that vary from pin pricks to being hit with an axe. none of the meds i have had touch this at all, the worst i have had in the last few weeks sends me to my knees and brings tears to my eyes, not had a really bad episode that leaves me on the floor crying though for a while, is this normal? i was really hoping for a period of complete remission, people i have spoken to regarding this say that i must have an acute form of this to have had 6 months pretty much non stop. i am so tired and fed up, every now and then i will get a morning or afternoon pain free, i forget all about it and will be just getting on with what ever i am doing then it hits and stops me in my tracks, its always worse after a pain free period, i am feeling so depressed and fed up with this. i dont seem to have any set triggers, touch doesnt always set it off, if im in the middle of an episode it was make it worse but it doesnt get set off by touch, same with eating and drinking, the cold and the wind. every now and then when im out and the wind blows it feels like i have a pin cushion pressed against my face or that someone not trained to do so is trying accupuncture on my face. not very pleasant. my docs are uselss, just got a referral for a neuroligist, no appointments available within the next 18 weeks! what am i meant to do for 18 weeks? am just about managing to stay in work, my wife is fed up, i am fed up, my kids are fed up, my work colleagues are fed up. it is a form of torture, i would prefer to be tortured at least then after 6 months there wouldnt be a lot else for them to do to me!
Borris
I am sorry you are going through this . It is extremely tough . especially when new diagnosed . Sorry that your neurologist appointment is far off. I understand how you feel . It is a really challenge trying to juggle a job and family with the disruptive burden of tn . I don’t know if its much comforter to know you do not struggle alone . So many of suffer from the same fears and frustrations . Its sounds like your meds are taking the edge off of your pain . I suffer the same kind of pain . i would speak to your doctor about maybe an increase . Hang in there it will get better . They need to get your medications right . Keep a pain journal . Write down questions to ask your doctor . often when you get to the appointment you can forget to ask . Make sure you read side effects of medication closely . If your doctor does not “listen” to you . You may need a new one . Make sure voice your concerns with your doctor . Have you suggested livingwithtn to your wife . to be quite honest it is is difficult for others to understand what you are going through. Human understanding is often limited to experience . If I had not experienced tn myself .I would not fully understood your suffering . Not that I would not try but it would be difficult . All we can do is try and be patient with others . Some members of my family went through denial . ( the seven stages of greif) . They thought I would just take meds and go back to normal but tn is life changing. Hang in there . there are many care and understanding people here that are struggling with the same problems each day . sometimes all you can do is take it day by day. I hope this helped . peace be with you
Oh you
Might consider Scott’s tn cards . useful
I just thought too . Stress and aneixty can trigger attacks .you might ask for something to help with the aneixty from your doctor . since it sounds like you have so much stress going on
thanks for all your kinds words, i just needed to sound off a bit andd let off some steam. i had tooth extraction after the pain had started, one dentist was useless and wasnt in the slightest interested in anything i had to say, the next one i visited was really really good and after xrays didnt show anything refused to take any further teeth out and he initially said sinusitus or tn or tmd, only after that would my doc see me and its gone from there, been on zomorp now since before christmas. dont know why i bother taking it as it doesnt appear to do anything.
Because people depend on you Borris . remember you have to be vocal . Try another med . unfortunately its not a one size fits all lol. That would be to easy lol. OK of my soap box . it seems your are feeling a little overwhelmed
I read your post and SO MANY of the things you described are exactly what I go through. I'm seeing a chiropractor who also specializes in neurology soon and am hoping for the best. Until then it is always that gnawing pain on my cheek/jaw/eye/temple. Sometimes I wish I would just go numb, then at least there wouldn't be the pain. I'll keep you in my prayers...hoping that we both go into permanent remission.