Losing patience, losing time, losing hope

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I dont want to take meds anymore. I dont want to feel like a zombie anymore. I hate my life. I hate not being the mother, daughter, spouse, sister, friend, etc i used to be. I try and try to go without the pain meds because they mess with my stomach. But when i go two days through the pain and that third day is just unbearable i give in and am back to being the percocet zombie. I hate the gabapentin. its the 8th or 9th medicine ive taken and they all do the same thing. Make me tired, drowsy, dizzy, confused and etc... None nearly as bad as the tegretol! OMG that stuff made me a totally different person. I would space out into a completely different world. I dont understand why TN is not more widely studied and why doctors who ARE familiar with with TN dont more quickly look into their patients having a surgery. I mean how much longer will i have to be drowsy and confused and have loss of memory, loss of the quality of my life? It seems like everyone else is living their lives without me. My children are living on without me and they really have no idea whats going on. They must just think that momma doesnt want them :(

Friends and family are going on with their daily lives and not giving a second thought to the fact that im suffering on a daily, no an hourly basis. I know i sound dramatic, but i just need to get it out. I know the only way to help myself is TO HELP MYSELF cuz nobody else is gonna do it for me. When I asked my neuro about the surgeries, he said it was protocol to go down the list of meds that may help first, and that all medical options have to be explored before surgical options are discussed. WHY!? TN is just EFFIN BS!!! I'm so fed up with the meds, with the pain with ALL the freakin side affects. Day by day, well really week by week i notice the pain getting worse. Sad thing is in April i was telling the ER docs that my pain was an 8-10... and now the pain is worse than it was then... i didnt think it was going to get any worse. It's starting to get to where i cannot even touch my face. It takes every ounce of courage i have to even rub my eyes or rinse my face in the morning for fear that ill send the excruciating waves of shock through my cheeck, jaw, or eye! GRRRRRRRRRRRRRRRRR!!! ugh, FML. that is all.

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FWIW, I met with a neurosurgeon last week who said he thinks meds should be initial response only while you make a decision about surgery. Now, he IS a surgeon and would say that, but I tend to agree. I HATE the meds too. I think you have every right to insist that your neurologist refer you to a neurosurgeon. Depending on the insurance you have, you may not even need a referral. You can always find a different neurologist too until you find one who is more aligned with your thinking.

We all need to vent some times. What ever gets you through the night.

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Brenda,

I know that it is hard to feel like you are at the end of your rope when you are only at the beginning of your journey. Some TN sufferers find the right treatment right away and for others it takes a while to find the treatment that both helps the pain and lets us have a life. It is hard to keep committed to the quest when you feel that your life is falling apart.

Kids are smart. Maybe send them letters and small gifts. Let them know you are hurt. We got my son a kitten from the pound and told him that I was just like a teeny-tiny injured kitten. It helped him understand.

I hear that your emotional and family suffering is as bad or almost as bad as your physical pain. Your fear of pain coming on is as bad as actual pain. A good pain support group should be able to help you separate these out so that they aren't all jumbled into one enormous elephant of a pain. When I get like this I can get suicidal. I just wanted to know if you are okay? Izzy

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I agree, some of the more powerful anticonvulsants do take several weeks to build up in the bloodstream before they give any relief. Plus if you stop taking them cold turkey you can also invoke a seizure, tis very dangerous. Please be careful. Wishing you better days. Peace, Min