Worked for 4 yrs with this condition. When I got injured at work and kept working it all went downhill. After a year of that I had to go out on LOA. Never went back. Not the way I planned my life. I need to apply for disability due to my multiple medical conditions but have been mixed between depression and denial.
I feel like that now but I can’t give up so I am hoping the MVD will be my miracle cure, well for afew years hopefully. God bless you both. Hugggs x
Bilateral ATN for over two years and I work full time or more. I am a sales agent for a real estate company and I have a jewelry design business. When I look back over my bad times with TN I don't know how I did it. I am a single mom though so I have no choice but to work. I just keep on going :)
Jane your amazing. What choice does us working mother’s have. I find as soon as I sit down, night times, weekends and holidays it all kicks off. What’s all that about.
Honestly, I am thankful for my work and, above all else, my daughter. They keep me busy and give me the purpose to keep going.
I have found that stress, anxiety, lack of sleep, my cycle and weather are my biggest triggers. Do you have anxiety? Idle time with that is usually the hardest. I just ask because that is something I am prone to.
Jane mate not meaning to sound a copy cat but exact on those also a glass of wine or two but I am prepared to suffer on that one. Dare I leave the house without my hat, no way, extra pills in my handbag a must.
I find it really hard some days…I’m a teacher and I work with 3 and 4 year olds so a noisy hectic environment 5 days a week! I’m only 26 years old though so no retiring for me 
I just go to work with extra meds in my bag and hope for the best. I really struggle some days though especially if I’ve had a night with hardly any sleep.
So sorry to hear you're having a difficult time right now. I've had ATN for 5 years now and it's destroyed my life. I am currently on a drug therapy that seems to be working for the time being but I still have periods when I'm not sure I'll survive the pain. I've had to quit working not only because of the stress but mostly because I can't wear my glasses anymore - the pain is horrible. They make my entire face hurt. It's hard to work when you can't see anything in front of your face. :-) Seriously, I'm 58 and have to wear reading glasses to see anything up close. My neurologist has never heard of this before so I guess I'm just special. Right now my drug therapy consists of Lamictal and Lyrica morning and evening with Lyrica only at lunch. Bedtime consists of Baclofen and Ativan. She's tried me on Effexor and dopinex but was unable to function on those. I'm also on a hormone patch to keep my hormones from fluctuating since that made me very dizzy. I've started taking melatonin to help me sleep and it's worked wonders.
So for now I guess things are ok but I certainly understand what you're going thru. My doctor has given me steroid packs in the past to help me through the debilitating episodes. Maybe that's worth a try. She's also given me Cambia. Good luck.
I’ve heard contact lenses are difficult too. Lycria has the worst side effects maybe switch them. I wish there was a permanent cure.
I also wish there was a permanent cure AND I wish we knew cause and effect. Come on; this is 2015. My brother has just been diagnosed with lymphoma and his doctors are able to pinpoint the chromosomes involved and target a very specific protocol of chemotherapy. We suffer with facial pain (not life-threatening) and it's near impossible to find a doctor who has even heard of it and who has the medical knowledge of treatments.
I've said before I keep a spread sheet to help me figure out what aids with relief and what triggers flare ups. Alcohol is definitely a problem for me, but I think that may be exacerbated by the meds. I can drink a (small) glass of wine now and then, but nothing more. Filling up my days from dawn to dusk doing all the things I love it out. S L O W down is my new reality.
What is most helpful to me is keeping to a regular schedule in taking medication. Previously, I was annoyingly prideful about the fact that I was so healthy (at 62) that I didn't need to take meds. It's really been hard for me to accept that I can't be spontaneous; I can't leave home without my drugs and I can't forget to take them. But then, that has also been a lesson for me to learn in this journey: accepting my new limitations. Working hard to get to a place of embracing the new 'me', instead of resenting, denying, and rejecting this TN monster. Oops! I guess that word means I have a long way to go to get to acceptance.
Hoping you all have a joyful day today.
Rissmal
I know this will probably sound goofy, and I don't know to what degree of pain this will all not work anymore. A hot bath makes my TN2 go away, either for an hour or for the rest of the night. At any rate within that hour of no-pain I can get to sleep. Also if I am exercising or moving around quite a bit like I am vacuuming and gardening, the pain goes away for awhile. Some weeks I have a very clean house and no weeds in the yard ;~)
I also had a few months remission after undergoing acupuncture. Coincidence or cause and effect, I don't know.
Elle,
I am currently taking 16 different medications, but they are not all for TN2. But for my TN I have to use Topamax as well as Lyrica, which causes me to be very sleepy. I also take Effexor and something for anxiety. Then, because of the pain, I take a long-acting narcotic as well as a short-acting narcotic. I also use the Lidocaine rinse because I often have horrible pain in my teeth when I lay down at night. The rinse is very helpful. As I posted in another post, I also frequently use heat on my face when things are really bad. I know it can get really bad!
I worked everyday until a year ago, but I quit my job for other reasons (and was driving 50 miles each way). Because my condition has been getting progressively worse, both my TN and I have Connective Tissue Disease, I finally, and very reluctantly decided to file for disability last month. I honestly don't know how I would get through a full day of work at this point. I just get so sleepy and if I went back to work, I would have to stop taking the Lyrica because the combination of the Topamax and the Lyrica is what makes me so sleepy but, it works so well for me and really helps my pain levels!
I'm sorry, I feel like I just wrote a book :) However, as you can see, there are a lot of options. Some of the others medications that were mentioned by others above, I just couldn't tolerate.
Cathy In MD
Rissmal - Very well said! Also, sad but true! Thank you for sharing your thoughts.
Cathy In MD
rissmal said:
I also wish there was a permanent cure AND I wish we knew cause and effect. Come on; this is 2015. My brother has just been diagnosed with lymphoma and his doctors are able to pinpoint the chromosomes involved and target a very specific protocol of chemotherapy. We suffer with facial pain (not life-threatening) and it's near impossible to find a doctor who has even heard of it and who has the medical knowledge of treatments.
I've said before I keep a spread sheet to help me figure out what aids with relief and what triggers flare ups. Alcohol is definitely a problem for me, but I think that may be exacerbated by the meds. I can drink a (small) glass of wine now and then, but nothing more. Filling up my days from dawn to dusk doing all the things I love it out. S L O W down is my new reality.
What is most helpful to me is keeping to a regular schedule in taking medication. Previously, I was annoyingly prideful about the fact that I was so healthy (at 62) that I didn't need to take meds. It's really been hard for me to accept that I can't be spontaneous; I can't leave home without my drugs and I can't forget to take them. But then, that has also been a lesson for me to learn in this journey: accepting my new limitations. Working hard to get to a place of embracing the new 'me', instead of resenting, denying, and rejecting this TN monster. Oops! I guess that word means I have a long way to go to get to acceptance.
Hoping you all have a joyful day today.
Rissmal
JustJane,
I agree! I find it amazing that I can feel a storm coming or even just rain more than an hour before it starts. The cold weather is the worst and I am constantly watching the barometric pressure. I have also found that high humidity can be a huge problem.
I try to keep busy but I also know that at times I really just need to rest. The problem I have is, knowing when it's time to get busy or if I should just rest?
Cathy In MD
Cathy, the humidity and storms can be a big problem for me, too. It doesn't help that I live in Florida. The late winter and spring have been very good but we are heading into the rainy season so I will soon be buckling up!
Cathy in MD said:
JustJane,
I agree! I find it amazing that I can feel a storm coming or even just rain more than an hour before it starts. The cold weather is the worst and I am constantly watching the barometric pressure. I have also found that high humidity can be a huge problem.
I try to keep busy but I also know that at times I really just need to rest. The problem I have is, knowing when it's time to get busy or if I should just rest?
Cathy In MD
Lyrica for nerve pain helped me
I haven't been diagnosed yet. In fact, I'll see the neurologist for the first time in two days. But I suspect that I have ATN or something similar. And I definitely have had immense pressure upon lying down. When this all started for me, I even had problems with the pressure just from leaning back against a chair or leaning forward over my desk at work. There were a few days when I had so much pressure in my head, like being held in a vice grip, that I thought I might actually be having a stroke or a heart attack. Fortunately, that's all died down for me, and I'm able to get to sleep most nights.
I'm not being treated yet. But an ENT did prescribe some Volatren gel. And that definitely helped with the pressure. I would put it all over my face 4x/day. I looked insane, since it flakes off, but I really didn't care. So far, that has been the only thing that has given me relief.
It's so interesting to read about the meds you ask are taking. I'm on gabepentin with ibuprofen. When the pain heats up, I take a tramadol. When it's really bad, I take one or two of my mother in law's vicodin. My doctors won't prescribe vicodin. They won't prescribe amitriptyline. They won't prescribe lidocaine patches, gel, or cream. I use Anbesol in my ear. I've tried hot pepper liquid. I wear ice packs on my jaw and ear.
I don't have insurance, so I can't find a different doctor. I had to get a yearly exam, to the tune of $400, just so they'll continue to prescribe the gaba. The MRI cost nearly $3000. Tegretol made me suicidal, and Lyrica (sweet, blessed Lyrica) gave me a head to toe rash.
*Sigh* I'm clearly feeling sorry for myself, as I'm having a bad flare, and I have so little help from the medical community.
Hey...Ive just been trying Aspercreame with 4% lidocane and extra strength "ORAJEL" It does an ok job of taking the edge off at least so you dont feel like you are going to rip your hair out. Im so so sorry to hear you are suffering. You are not alone....always remember that.
Dear Beth,
Please dont ever feel like you need to say "feeling sorry for yourself". I think we all know that feeling. It feels good to let it out on this site and I think others would agree thats what we are hear for. To lend an ear, a shoulder to cry on and offer advice on how we deal. There are no weak people here. In fact Id take anyone on this sight on my "team" any day as I know what it takes to just get through a day of this crap known of us asked for. Stay strong.......
Beth said:
It's so interesting to read about the meds you ask are taking. I'm on gabepentin with ibuprofen. When the pain heats up, I take a tramadol. When it's really bad, I take one or two of my mother in law's vicodin. My doctors won't prescribe vicodin. They won't prescribe amitriptyline. They won't prescribe lidocaine patches, gel, or cream. I use Anbesol in my ear. I've tried hot pepper liquid. I wear ice packs on my jaw and ear.
I don't have insurance, so I can't find a different doctor. I had to get a yearly exam, to the tune of $400, just so they'll continue to prescribe the gaba. The MRI cost nearly $3000. Tegretol made me suicidal, and Lyrica (sweet, blessed Lyrica) gave me a head to toe rash.
*Sigh* I'm clearly feeling sorry for myself, as I'm having a bad flare, and I have so little help from the medical community.