Finding the "New" Normal

I was diagnosed with TN after suffering for four months with bad diagnosis from Drs, dentist, and ER. They all wanted me to have TMJ or a bad sinus or tooth/bone infection so badly. My primary care Dr. was a physician's assistant only 3 years out of school, and kept attributing my description of "horrific indescribable" pain to my history of anxiety.

He was in such denial about my pain --kept saying "wet compresses" and "massage the joint" but it hurt!!!! I came back and begged him to help me after one time too many he was dismissive. Finally he prescribed me Amitryptaline, which helped me about 50%. In that month I changed primary care physicians, but it was still a fight to get treatment or help. In the meantime, I started getting electric shocks in my hands and feet as well. :(

Finally, I got a Dr to listen to me, and I got a neurologist at the best hospital in the area (I am in DC, Dr is at Georgetown). I am waiting on MRI/MRA results and a follow up. He ordered slices w/contrast and it took about an hour and 20 minutes in the machine.

I am up to 400 mg of Tegretol a day and still on Amitryptaline and the breakthrough pains keep coming. Sometimes it feels like a stapler instead of ice picks. It's less distracting and painful, but I still have only managed 3 pain-free days so far out of nearly two weeks on the tegretol.

I have been going through these health problems for a while. Mysterious allergic reactions to medicines I've taken before now send me into anaphlactic shock. A skin rash turned into cellulitis last year, and it was very painful. I also have Hashimoto's disease.

I also had a very bad fall down the stairs 3 weeks ago where my shoulder popped out of its socket. Now I face 6 weeks of physical therapy, twice a week. I don't really feel like it, but I am limited in many ways, can't reach above my head without crying out in pain which means I can't even use my dominant arm to get a glass.

I am 38 years old, and I work part-time as a freelance writer. I also have gone back to college to complete my degree and had made it up to 9 new credits before the trigeminal neuralgia got me.(I had 46 from community college already.) All the classes are online through Thomas Edison State College and I will be "testing out" of many of them after studying the course materials.

Now I feel like all my hopes and plans are in limbo. I am literally scared to make plans for a night out with friends. My boyfriend says he loves me, supports me, will even marry me and take care of me. I come from a toxic family full of abuse and alcoholism. We don't talk much.

A lot of my friends have gotten married, had babies. Others are still going to bars and music shows but I have found I have to be home by 10 pm, because if I stay awake, the breakthrough pain gets much worse.

Not sure what I am trying to say except I was already lonely and trying to find new ways to make friends before this disease hit me. I was volunteering (but now can't commit) and looking for new activities to meet people.

Now the "new normal" is complete isolation. I have no idea how to get out of this pain long enough to try and meet new people or be social. I feel like this disease is a huge, invisible wall between me and the outside world. If I could just figure out how to sleep and still make money, I would do that instead. I have been feeling pretty depressed and lost. I told my boyfriend I am in my mourning stage. But I hate it.

We have all been there…please do not give up hope. There will be somebody out there to help you. As I am not pain free but my pain is better than it was a year ago I am so greatful. Took me almost a year to realize that a positive attitude is also key. Sounds so cliche but I promise its true. Best of wishes

Thanks Jennifer.


Did my first day of physical therapy for my shoulder and it hurt like hell, but I am feeling more positive about it. It's overwhelming to have the "face thing" (that's what I call it at home) and now this shoulder injury that requires a month or so of physical therapy. All the "what ifs" drive me craxy.

There's also just a lot of fear that the fall may be related to something in my brain, too. I don't really remember the fall very well, and I have been quite clumsy(BEFORE tegretol) Waiting on MRA/MRI results is really hard.

I have extreme anxiety and all the waiting drove me insane as well. In a three year span I had a bad reaction to a blood draw which left my arm in numb / pain for two weeks, then I lost my dad, then a rare rash covered my entire body for two months, then I got gastritis (stomach lining is basically gone/ irritated) had to be put to sleep for an endoscopy of the stomach…then I had a buldging disk in my back and also had to do pysical therapy …some marital issues …then was hit with tn…I couldn’t understand why all these bad things kept happening to me. Hated life spent the last year dwelling crying and upset. Finally like a light switch went off and I have such a positive attitude now…who knows what the future holds…I’m only 29 and the thought of having this ( atn) for life is scary but we are all strong and come overcome it. We have god. Last few weeks my dog has been having real bad health issues… She is like my little baby…she’s not even two yet ,so I have been VERY stressed …so my pain is worse now again but still 100% better then a year ago…I’m not gonna let it get me down…I’ll get threw it just like I did before…keeping busy also keeps your mind off of it. I hope I have given you some hope. Please don’t let it get you so hopeless I know the feeling. STAY POSITIVE . I’ve learned that all the millions of what ifs I have are never going to get answered I could sit here all day and analyze every little thing of what why were etc but then again you are letting the condition control your life you can’t do that. I also have bad memory issues from all the medication…my only prayer is that I will be able to have a happy healthy baby some day if I have to take these meds for life. I try to just not worry like I use to.

Do you have classic or atypical and if your atypical what are your symptoms?

I was diagnosed with classic TN but the stabs behind my eyes (both) started coming after I was on Amitryptaline already for months and it's definitely related to my TN. So it may change.

The stabs feel like they are behind both eyes. My TN is on the right side and it moves from my cheek to my teeth and nose and inside my mouth where it sometimes even has gone numd. The nose hurts the worst when I get it because I think allergy season is causing more it to be worse.

So I don't know, my diagnosis may change. I get all the typical symptoms (can't touch cheek, wind makes me get attacks, cold and hot in my mouth are awful) It travels from my mouth to my face and behind my nose.It's always stabby or sometimes feel like I'm being stapled.

My first flare up lasted weeks and I literally was having hundreds of attacks a day, almost all of them in my mouth and then in the cheek below my eye. I couldn't sleep and I was given some of the hardest core painkillers (oxys etc.) and nothing seemed to help.

One time I tried to count the stabs while ON Amitryptaline and got frustrated when I hit 20 by 11 AM. (I was put on Amitryptaline first b/c I had an inexperience physician assistant who prescribed it for TMJ.)

I started Tegretol 3 weeks ago and am up to 400 mg. Waiting on my neurologist to call me back to see if he wants me to go up. I got a FULL eye stab last night several times (on my right side, where the TN first started back at the end of December) and it seems to start around 7pm when it gets pretty bad. But before the tegretol, I got stabs off and on all hours of the day.

I’m atypical all my pain is inside of my mouth…hence why I kept going to dentist in the beginning. I tried tegretol and two days it my pain was almost literally gone for about two days. Then it came back so I raised the dosage and it made me feel crazy so I had to in my opinion stop.

Thank you for your reply! I've kind of been through a lot of stuff, emotionally/trauma wise when I was younger and have overcome a lot. The health stuff is new for me -- esp. becoming allergic to things like penicillin.

LOL all the allergies cropped up AFTER I got my thyroid under control. And in the midst of BEDBUGS -- which were a huge allergic nightmare and just a stress nightmare in general. (bedbugs are gone and I am now an expert on them, in case anyone ever needs that expertise)

Prednisone became normal for several months leading up to my first TN attack. It made me grind my teeth and emotionally messed me up for a time. But thinking back I had symptoms of TN briefly in my face several times in the past year, prickly pain that went away several times.

With Hashimotos disease I lost about 25% of my hair, and it is just now growing back (2 inches!)

But I know I can make it through, I am just scared and in pain and tired. I wanted a break before the next emergency/health problem.

I was feeling really positive until I fell down the stairs. Then my whole plan to go to the gym to boost my endorphins failed I had been going 3x a week for a few weeks and had managed to lose 6 pounds.

I'm cleared to go back to the gym, though but I am scared of it a bit.



Jennifer Muir said:

I have extreme anxiety and all the waiting drove me insane as well. In a three year span I had a bad reaction to a blood draw which left my arm in numb / pain for two weeks, then I lost my dad, then a rare rash covered my entire body for two months, then I got gastritis (stomach lining is basically gone/ irritated) had to be put to sleep for an endoscopy of the stomach..then I had a buldging disk in my back and also had to do pysical therapy ...some marital issues ...then was hit with tn...I couldn't understand why all these bad things kept happening to me. Hated life spent the last year dwelling crying and upset. Finally like a light switch went off and I have such a positive attitude now...who knows what the future holds...I'm only 29 and the thought of having this ( atn) for life is scary but we are all strong and come overcome it. We have god. Last few weeks my dog has been having real bad health issues... She is like my little baby..she's not even two yet ,so I have been VERY stressed ...so my pain is worse now again but still 100% better then a year ago..I'm not gonna let it get me down..I'll get threw it just like I did before...keeping busy also keeps your mind off of it. I hope I have given you some hope. Please don't let it get you so hopeless I know the feeling. STAY POSITIVE . I've learned that all the millions of what ifs I have are never going to get answered I could sit here all day and analyze every little thing of what why were etc but then again you are letting the condition control your life you can't do that. I also have bad memory issues from all the medication..my only prayer is that I will be able to have a happy healthy baby some day if I have to take these meds for life. I try to just not worry like I use to.

I felt crazy for a few days but it seems to have leveled out. It sucks that so many of these meds have such bad side effects. I actually have started sweating a lot more on tegretol, and have stomach upset.

Before the tegretol I was taking flexeril every night before bed. It left me very constipated and raised my heart rate, but the drs never realized my elevated heart rate was the flexeril. It's normal now that I am off of it.

The flexeril helped with all the tension I get from holding my head in a certain way, but I don't think it helped with the pain. Helped me sleep, too.

I hope you find the right meds to help you!



Jennifer Muir said:

I'm atypical all my pain is inside of my mouth..hence why I kept going to dentist in the beginning. I tried tegretol and two days it my pain was almost literally gone for about two days. Then it came back so I raised the dosage and it made me feel crazy so I had to in my opinion stop.

I’m right there with you as well as trama mentally when younger!! Life’s been hard but I also have a lot to be thankful for. I’m a firm believer in everything happens for a reason! And as far as the prednisone I tried lower doses that didn’t help and yes they mess with you mentally I don’t like it. Then I recently tried a very high dose which I believe would have maybe helped but made me break out on my face and back with what looked like I’d been stung by wasp and then once again it meses with me mentally so 8 days in I cold turkey stopped which you don’t do but I didn’t give a shit…let’s just say I spent the entire weekend sick as shit and feeling like a crack addict going threw withdrawal.I promised myself after that I’d never use prednisone again

Yes they ALL have side effects…horrible

Jennifer,you have turned around,reading you now is music to my ears! You have struggled,you went through hell,and still do by the sounds of it and yet now here you are still in pain but so positive! Well done you! And one day you will get that beautiful baby,just you wait and see! Hugs!

Thank you so much Eileen that really really means a lot to me!! The last couple of days I’ve been crying for no reason and kinda letting the old me creep back threw a bit…I think it may be side effects of the nortriptaltn…as I’ve only been on it about 4 to 5 weeks and I think it just now be getting into my system good…or also my period is suppose to start at the end of the week. But see when a drug starts effecting my mental state that’s when I cut it off…I can’t be down again I just can’t. I’m not sure what to do. But this condition has showed me how much I love helping others . anyone had worsening of depression anxiety from nortriptalyn??

I made an apointment to see my obgyn to discuss these medications and getting pregnant and I’m terrified I won’t hear what I want. I’ll be crushed…see just writing that made me start cryi g for no reason…anyways hopefully my obgyn gives me some sort of hope

I wish the best for both of you. When I first read about TN it said that most women over 50 get it yet when I read the post on this forum I see very young people. I feel for all of you and my prayers go out.

Yes way more younger people then they make it out… I’m 29 this month. April marked one year of tn . best wishes to you as well

Hi Jennifer,

I'm very happy reading your posts, too. I have prayed for you and now you have a really great attitude and are helping not only Melissa, but us all. I mean, we're going through this and it's not easy, not to mention the side effects of different medications. However there's also a possibility for us to have a more challenging but hopefully good life. And Melissa, don't feel you're in limbo. Your boyfriend is supporting you. Just take one day at the time, we're here for you as well.