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 IÂ’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 itÂ’s an icepick or knife being twisted. my right ear has also experienced pain.

I have not been able to work in 10 years. IÂ’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. ItÂ’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. IÂ’m like a non entity. IÂ’m single and canÂ’t allow myself to get close to anyone because IÂ’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, itÂ’s come and gone. At first, a few hundred mg of tegretol worked a day. Now I need over 1000mg. I swear itÂ’s chopped 25 points off of my IQ. I use incorrect words sometimes. ItÂ’s awful. Since I told my doctor I canÂ’t stand the tegretol, he wants me to transition to lyrica, which I havenÂ’t started yet. IÂ’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 doesnÂ’t completely eliminate the pain and I canÂ’t stand the side effects. While IÂ’m not dependent on Dilaudid or any other controlled substances, at this point IÂ’m not totally averse to taking more and risking that, provided this flair up doesnÂ’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 itÂ’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 havenÂ’t been able to in a year, and exercise is the best medicine for pain. But when youÂ’re in pain like this itÂ’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 canÂ’t drive after IÂ’ve used it.

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

I donÂ’t know what to do and need advice from people who have my condition. IÂ’ve never been to a support group for this but the time is now. IÂ’m reaching rock bottom. IÂ’d never do anything drastic, I love my parents too much, but IÂ’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,
Clyde

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.

Thank you so much for that info. I had no idea that forum even existed.

I am still employed but got run off of my last two jobs by intimidation and denigration. I had college too (Bachellor of Science) and I am trying to study for my boards, but other medical problems keep me from studying effectively. I scored 33% on my exam so I am embarrassed to discuss my challenges with colleagues, who give me worthless, non-applicable advice. There was a back stabber at my last job who was struggling with health problems of his own. He told HR that I was mean to him (he did not know I knew). Many were mean to me. He later got fired and apologized to me, and now I consider him a friend. I hope I wasn't mean, I try not to be. I am in a supportive environment at my new job, but still can't study for my boards. I find that an ergonomic workspace that includes drop keyboard, screen close enough for blind people, and working from home allow me to continue my career. I miss out on most networking things unless it happens by Skype. I lost 4 weeks of vacation by changing jobs so my biggest feat is to try to build up personal time. But I am allowed to "buy" personal time if I don't have enough. My TN is not as severe as my other problems (yet, fingers crossed). However I had a long period where I could not talk, and my requests to accommodate that were denied at my last job, and I got a lot of disrespect and was told to go on disability until I was better. I don't think I will ever be better and I am happier and healthier if I can work. I would not be able to afford care if I did not. You have a much tougher road to travel than I do. Please let me know by private message if I can help with job leads or whatever. My field is Engineering.

Have you tried Trileptal (oxcarbazepine)? I take it and it has done wonders for me. It's the one medication I will NOT be without.

Wow, I thought that was me writing. What you are sharing sounds like what I face. I live with RSD since 2008 and it is full body, taking over my life. I lost my job of 20 years in 2014 because I was taking off work. I have ssi, thought I was too young apprantenly not. I have been on disability with midicare and it truly sucks. This was a work injury mind you and it was my world and when I was let go it almost crushed me. So living with that as well and then living with all the progression that occurs with rsd, it takes over everything, even your mental status. What medication are you on? I was taking Levorphanol until medicare copay was $1,000.00 a month. now I have brain shudders almost daily. I am new to this forum and thankful for it as well. I hope you find some answers Clyde. Prayers!

Whats a brain shudder?

Wow, I'm so sorry. It sounds like your life has been turned upside down! I recently started using cbd cream for pain in combination with tylenol which has worked great for me and I need to be able to drive. Seriously, look into any drug that's not natural closely before you start them. I just wrote a post about gabapentin withdrawal symptoms while suffering from hashimoto's. Not fun, and I wish I had known what I know now because I never would have started taking it. I've heard similar things about one of the medications you described.
Good luck, Debbie

Brain shudder? It sounds to me like when the dog is barking, kids are yelling and there is a monkey on the ceiling fan.

Clyde , I have had TN for over 3years now ,have tried everything imaginable except surgery and I won't go there until I was given Gabapentin . the first 100 mg pill the first night was the first time I had slept in 8 months .I now take 800 mg X2 daily .it worked for me ask your Dr. I don't have the side effects I had with the Carb/Baflofen/etc.