New Member
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Join Date: Sep 2018
Posts: 2
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New Member
Join Date: Sep 2018
Posts: 2
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New here
Hi,
I am new here. 49. I have suffered from ATN for 10 years or so. I have also had cluster headaches (ended in 2001) and chronic headaches (for 30 years, recently improved but continuing). My pain is right over my top right molars, although Ive had a little pain in the lower right molars too. I get the pain that goes straight from above those molars to my eye, like its an icepick or knife being twisted. my right ear has also experienced pain.
I have not been able to work in 10 years. Ive had all of the fun that a chronic condition leads to. My closest friends from college and graduate school will have nothing to do with me. Its like I never went to school or had them as buddies and roommates. My best friend from college died in March and not only did no one call me, but his brother woukdnt even return my calls. Im like a non entity. Im single and cant allow myself to get close to anyone because Im so unreliable. This is not how I thought my life would turn out.
The medications....mostly tegretol. Since the trigeminal neuralgia started in 2008, its come and gone. At first, a few hundred mg of tegretol worked a day. Now I need over 1000mg. I swear its chopped 25 points off of my IQ. I use incorrect words sometimes. Its awful. Since I told my doctor I cant stand the tegretol, he wants me to transition to lyrica, which I havent started yet. Im very leery of it.
Vitamin B12 injections initially stopped the ATN, but after a year it came back with a vengeance. Now taking too much B12 will cause ATN.
Dilaudid works ok, but doesnt completely eliminate the pain and I cant stand the side effects. While Im not dependent on Dilaudid or any other controlled substances, at this point Im not totally averse to taking more and risking that, provided this flair up doesnt last forever.
I have lidocaine nasal spray that I asked my neurologist for, and while it kind of works, he diluted it with too much saline. He gave me 1 or 2% when I wanted 4 or 8%, so its not working as well as I had hoped.
Baclofen and Valium work, but make me tired and my feet feel like concrete.
I like to exercise, but I havent been able to in a year, and exercise is the best medicine for pain. But when youre in pain like this its hard to exercise.
Finally, Medical marijuana works great for it, but when times are bad and I have the pain all of the time, like now, I need to use the marijuana 4 or 5x a day, so it becomes costly. Plus I cant drive after Ive used it.
So heres my question. How do people like me pay their bills? How do you guys do it? Ive never applied for public assistance as I have a generous family who help me and who I live with (Thank God) and Ive been very resistant to applying for it, but I cant impoverish them forever. I know there are sites out there for learning about SSI etc, but is that what you all do? Are some of you able to work? If so, how? Im almost non functional at times. Im really reaching my breaking point. Im trained in computer networks and security and I cant even comprehend some of the basics anymore because of the high dose tegretol. Ive learned to cope with the pain - Ive had some sort of head or facial pain probably 1/4 - 1/2 of the days since the fall of 1988. But not being able to pay my bills is killing me. Im close to declaring bankruptcy. Once again, life wasnt supposed to turn out this way.
I dont know what to do and need advice from people who have my condition. Ive never been to a support group for this but the time is now. Im reaching rock bottom. Id never do anything drastic, I love my parents too much, but Im about ready to give up hope of ever being able to work again, and without hope life really sucks.
Thanks in advance for any help.
Take care,
Clyde
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