I got my vision back! Such a fun side effect. So I ended up at another ER the next morning. The Dilauded had worn off. They numbed the nerve. That lasted longer and told me I had 8 hours to get in with a neurologist. Well I couldn’t make that happen. It was more like 24. He confirmed the diagnosis, started me on Tegretol and gave me more Norco. I thought I’d be good. I don’t know what happened between the time those doctors stopped my pain medicine and when I ended up in the ER, but the bottom fell out. The last week and a half have been a hell I didn’t even know existed. I know this is just my first one of these and those of you who have been suffering from this for years might be saying I’m lucky to have just had it a week, but hell is hell -first week or 100th week. The Norco the Neurologist gave me suddenly didn’t work at all so I was taking 2 every 2 hours just to survive. I thought I was going to lose my freakin’ mind! How is a human supposed to endure that and not? I didn’t know that kind of pain even existed. It has shifted my whole “pain scale” rating. I knew my family was just worn out with it so when it’d get really bad I’d go in another part of the house so they didn’t have to see me like that. I tried for 5 days to get help from my Neurologist - reporting the problem, but he just got pissed at how many times I’d contacted his office. All the while the side effects of the tegretol we’re kicking in…I could hardly hold my held up, tremors, jerking, my vision just “goes out” from blurriness,sleepy, groggy when I’m awake. NIGHTMARE. I finally got to pain mgmt. put me on Oxycontin. That definitely helps. Not eradicates, but helps. But the Tegretol, I’ve been told, should be kicking in by now and it doesn’t seem to be. Has anyone else had that happen? It’s like Tegretol is supposed to be this wonder drug and if it doesn’t work, well you don’t have TN. Is that true? Can it be combined with something else? I left the house today for the first time in a week! But when I got out in the world I realized how truly cooky I was and I had to take pain medicine so I came home. And nothing I mean nothing tastes good. I’m hungry, but nothing sounds good to eat. My family is at their wits end from the stress. They don’t know how to help or what to do. Our house is just this cave of darkness and pain. And I’m pissed! I’m pissed at the dentist that did this and didn’t own up to what he did. I’m pissed at the oral surgeon that covered his butt. This could have been caught and started to be treated way before it got this bad. Why me? I just had a cracked tooth. This was my first root canal. The dentist is a friend of the family. Why me? I’m sad too but if I start typing about that I’ll cry and I don’t have it in me right now. I’m on empty and it’s not over. How do you survive this???
Hi DFisher. Sorry to read that rhings are so bad for you at the moment. Tegretol does take a while to kick in, and get the dosage right. Sometimes you need a different Anticonvulsant. Not everybody can take Tegretol. I hope you have explained to your family what TN is like and how they can help you when you are having a bad attack. Please try and read as much as possible about this condition. It helps to know these things. Take care and don't forget we are all here for you. Mary
Thank you Mary. That’s just the thing-I don’t know how to explain how things are for me except to say what I’m feeling and thinking right now. I’m new at this and right now I’m just in shock with it all. I think “is this really happening to me” A LOT! And, “Surely this isn’t hurting as bad as I think it is. Can this be possible?” This is just out of the ball park of anything I’ve ever experienced. I feel a lot of guilt for what it’s doing to my family so I try to hide as much as I can. If I’m being honest, I really feel stupid and embarrassed a lot too. Thinking, “how could a strong, ‘normal’ person not be able to handle this better?” I’m sinking and I don’t want to show it. I’m frustrated and I don’t want to say it. Surely it should be getting better by now. It’s hard to read because of this “vision thing” I have going on. The longer I look at something the blurrier it gets and sometimes I can go hours not being able to see my phone or computer screen. I’m trying though. Thanks for your words of encouragement!
I know how you feel regarding feeling stupid and embarrassed. I have had trouble with this. I am now thinking - TOUGH - if people see me that is their problem to get over it. I don't know if that is the best way to deal with it though! It might be a good idea to see your Doctor/Neurologist to mention this thing with your sight. It may be a side effect of the meds. I hopt things get better for you soon. Mary
I am battling so much of the same frustration. People including your family and friends, don’t understand a disease that is incurable and why you can’t get well. I have had TN for 8 years! Went to 30 t doctors. And I’ve tried all of the out of box treatments such as two kinds of chiropractors, accupuncture, counseling and psychiatry. I even tried the stupid laser med center! That I hope everyone heeds the warning is a scam! I got stuck paying $10,000 for that and had to stay in hotel near clinic for 8 long weeks and it did nothing. I had the big MVD surgery 5 years ago and it was very tough and over a year to recover. I got better with less shocks but it came right back along with atypical. I finally found a great neurosurgeon at university hospital that specializes in TN and studying for a cure. He said to me at very first meeting that I needed to understand there is NO cure for it yet. Some treatments and surgeries can cause it to go into remission for a time. He put in a periphial nerve stimulator and it’s been a year and past few months have been hell ! The stimulator has shifted and now stabbing into my nerve! I am back sobbing into a pillow every night for hours the pain is so high. I lost my job my husband and all my friends. I am drowning in depression now and can honestly say I’m only still here because of my kids! I wouldn’t want to hurt them but having to lose the mom they knew is killing them. I’ve been reading up on functional medicine and wondered if anyone has had success with that? I hardly ever leave my house and I am not living anything that reminds me of normal !! I am scared!! The pain and losses and longevity of All this is pulling me under. I know I should go back to counseling but I can’t afford all my drs and medicines as it is. I AM Really scared that I can’t live the rest of my life with this! I am so sorry you are walking a similar road. Nobody can understand but us living it ! I feel like my jaw has been crushed and shattered by a strong man and no one will help me!
Praying for you too !
Kim
Oh my god! And I’ve wondered how I was going to survive this early into my ordeal. I’m so sorry for all you’ve endured and lost. I’m already questioning my neurologist. He basically told me 10 days of Tegretol, the pain would stop, and after a couple of months Id be cured forever. On top him saying how horrible this is and if I need him email, that goes straight to his desk for him to help, but he ripped my but when I could get no one to return a phone call for 5 days when my pain medicine felt more like a baby aspirin and I’d been to the ER 3 times! For me it’s the atypical that’s absolutely maddening! I just have these very brief, couple of hours at a time, “break” meaning it eases a little with the pain medicine, then here we go again-my left eye, cheek, and nose feel like they’ve been crushed in, my jaw not quite as often, but I describe mine as a piece of rebar sticking through my jaw. It’s the family that’s the hardest for me though. I feel soooo guilty for what I’m putting them through. I apologize constantly. Then when they have their moments of frustration, well “shame” is the only way to describe how I feel. I get it though. I see how this could drain the sufferers friends and family. There is absolutely no way to explain how painful it is. I see how maintains some level of sympathy for an extended period of time could be hard. Does this tear up everybody’s life? I’ve read so many stories where is has.
DFisher, sorry you are having a bad time. Time helps with learning what helps and what does not. Having TN for 19 years has been tough. I am tough because suicide is not an option for me. The mortgage people don't care that I hurt, they want their money. I wish the doctors had to experience TN to treat it, like cops get tasered and sprayed with pepper spray, so should the doctors know what they are treating. I keep busy, work full time, care for my dogs, just try to enjoy what life I have. I feel short-changed, like I did something bad. But, life is worth living. We are suffering so others won't so badly, I guess. Hope this helps.
Oh Kevin you helped so much! How have you lived with this for 19 years? You’ve obviously got a much better “how to deal with this plan” than I do. What do you do for pain? Have you had any treatments that have worked? I don’t know how you go to work! I can’t even go outside unless absolutely necessary because the cold air triggers a flare up and half the time I walk around the house with a scarf around half of my head just to keep it warm and protected from a possible cool draft. But to hear your positive attitude just lifted my spirits! Thank you so much for responding. I love to hear more about what you do to live, not just survive! And good to know that it’s not just me having bad luck with doctors. So tired of waiting for appointments with “experts” only to find out I got more info from reading Striking Back than they could give me. All I get is "yes this is a terrible condition to have and because yours is atypical there’s very little that can be done to help you. Narcotics aren’t working, keep having to go up. Thinking about moving to Colorado!! Any more help you can pass on would be appreciated. And thank you for giving me hope to get thru the day!!
I relieve the pain any way I can. I"ll take a hot shower, as hot as I can handle, then after a few minutes, turn it to cold to "peak" the pain, knowing it will calm down soon. Don't get me wrong, it is tough, but with my faith and determination, I get through it. Usually the pain is bad, but I am badder. Just don't dance with it, that makes it worse. With me, the more busy I am the better the pain subsides. I dug my pond out by hand, it is 100 by 110 feet, about a third of an acre. Took 4 years, 3 wheelbarrows, and 9 shovels. I stacked the dirt in a circle around the pond. It has fish, perch and catfish, and my dogs love to swim there too. I keep my mind busy, planning my next project. Work helps too, I get support from my fellow employees and customers too. I have 21 years with Kroger, never give up, never quit and know one day it will all be over, that is where my faith comes in. Somehow I find things amusing and fun, Take care, Kevin P.