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Old 09-06-2018, 09:40 AM   #1
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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 I’ve 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 it’s an icepick or knife being twisted. my right ear has also experienced pain.

I have not been able to work in 10 years. I’ve 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. It’s 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. I’m like a non entity. I’m single and can’t allow myself to get close to anyone because I’m so unreliable. This is not how I thought my life would turn out.

The medications....mostly tegretol. Since the trigeminal neuralgia started in 2008, it’s come and gone. At first, a few hundred mg of tegretol worked a day. Now I need over 1000mg. I swear it’s chopped 25 points off of my IQ. I use incorrect words sometimes. It’s awful. Since I told my doctor I can’t stand the tegretol, he wants me to transition to lyrica, which I haven’t started yet. I’m 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 doesn’t completely eliminate the pain and I can’t stand the side effects. While I’m not dependent on Dilaudid or any other controlled substances, at this point I’m not totally averse to taking more and risking that, provided this flair up doesn’t 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 it’s 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 haven’t been able to in a year, and exercise is the best medicine for pain. But when you’re in pain like this it’s 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 can’t drive after I’ve used it.

So here’s my question. How do people like me pay their bills? How do you guys do it? I’ve never applied for public assistance as I have a generous family who help me and who I live with (Thank God) and I’ve been very resistant to applying for it, but I can’t 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. I’m really reaching my breaking point. I’m trained in computer networks and security and I can’t even comprehend some of the basics anymore because of the high dose tegretol. I’ve learned to cope with the pain - I’ve 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. I’m close to declaring bankruptcy. Once again, life wasn’t supposed to turn out this way.

I don’t know what to do and need advice from people who have my condition. I’ve never been to a support group for this but the time is now. I’m reaching rock bottom. I’d never do anything drastic, I love my parents too much, but I’m 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,
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Old 09-07-2018, 08:40 PM   #2
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Hi Clyde

Welcome to NeuroTalk .

I am really sorry to read about what you are experiencing; it it something that I know very little about but hope that other members will be able to help you.

The Social Security Disability forum (https://www.neurotalk.org/forum28/) could help you. Other members have explained how they have got SSI there.

Best wishes.
Knowledge is power.
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Old 09-07-2018, 10:54 PM   #3
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Thank you so much for that info. I had no idea that forum even existed.
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cant, im, ive, its, pain

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