New to this getting worse, and don't know what to do

Hi everyone
I was diagnosed in 2015 with TN. Thinking back I probably
had it for awhile but the ER always said it was a Migraine.
So in about 2008 I noticed I was having to leave work because
Of a sudden headache that just popped up. My boss was
getting upset about me leaving early all the time and threatened
To fire me. I didn’t know what to do they thought I was faking it
Just to get out of work. So I ended up having to suffer the pain
At work. At the time I was a cashier not being able to focus. In 2012
I changed jobs to a production worker at a thrift store. I felt better
Knowing that if my head started to hurt again at least it couldn’t
affect my work because all I was doing was Hanging clothes so
When the pain came I Could just stop till it passed. Oh I forgot to
Tell you starting in 2008 I started collage so I was working full time
and and going to college part time at night. But back to my story
the way I found out I had TN was one day by Time I left work my
head was in so much pain but I had to go to school. I had some
time between work and school so I went to the classroom because
I knew no one would be their kep the lights off and tried to stop it
But when everyone else came in I was still hurting. At break time
My head was hurting so bad my teacher came to me and asked
if I was ok I told her no I think I need to go to the ER. I had my
mom and dad come pick me Up and take me there. As soon as
The doctor came in she asked me a few questions look at my mom
And said I think she has TN I was so glad that doctor was there
that day or I would still be trying to find out what this was.
But after that attack I started having this Continuous pain on
my right side in the cheak eye and around the ear. I was sent
to the Neurologist who started me on meds that didn’t work.
They didn’t have much to choose from because I am allergic to
so many medications it’s hard to find one I can have. They tried
me on a couple different ones and then sent me to The
neurosurgeon we talk about the 3 Options I had 2 of which I
would have to keep coming back And one they suggested most
Because it had a higher success rate And that was the MVD
So I had the MVD and Regret having I now. It worked for about
6 months then the pain came back and has gotten worse. The only
Good it did was make it so I could move my eye with out pain but even
That has come back. I am so afraid of having anything else put
In my head or done to it I don’t know what to do. I Am I on gabapentin and
oxcarbazepine witch help because if I don’t take them I am in worse
Pain. But I am still in pain every day and most the time it starts when I wake up.
I do have both TN1 AND TN2. I have so many triggers most the time
I stay in a very dark room. I don’t get out much unless I am going to the doctor
Or the sun has gone completely down I have gotten to where I don’t even want
To talk to anyone. I have lost my ability to work and had to leave school as well. I have
Been denied for disability because I am onl 36 and they don’t know much about
About TN so I have no income if it wasn’t for my parents I don’t know what I would do
But this is getting harder on them as well. Has anyone ever really gotten over this.
I’m sorry for going on but I haven’t had any to talk to about this and I have to be the strong on in my family.

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Being bothered by light sounds like migraine to me, which could be kicking up the TN/ATN. Have you been treated properly by a neuro for possible migraine issues?

That’s what everyone one tells me I have told the doctor about the sun making it hurt but all he does is ask me what I do to help lessen it i tell him by staying inside and he doesn’t say anything else about it. I think it’s more of the Squinting of my eyes when out In the sun because it makes my face titen up. My trigger point is my cheeks around my eye and across the top of the ear like where glasses sit. I can’t where glasses because of it also. I went to the eye doctor a he said they could fix my vision with glasses but because I couldn’t wear them they can’t do anything. I asked him what about contacts and he said for a person with TN it’s out of the question because they make it worse. I do get migraines but usually it’s on both sides of the head. I do have pills to take for when I get one.

Hi, I know just what you are going through. I had the MVD after trying all the other greatways to help stop the pain. Cyber knife, NSR nothing last. I finally had the mvd and nearly died. Now I can’t hear out of one ear, my face is flat dead, I can
t hold the food in my mouth , I can’t teste anything, my eye on the mvd side hurts like hell. It gets dry and I don’t know it until I can’t see properly. Yeah mvd is great right NOT. It’s just a different hell. And it wears off but the hearing never will come back my face will always be numb now, and all the other things along with TN returning. WOW what a future! Wish I had something to saqy that would help but all I can do is tell you about what I have to deal with due to doctors not being able to help us.
Wheels 4 legs, said all that?

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Thank you wheels4legs
I’m glad I’m not the only one who knows the doctor don’t have a clue. I keep hearing about the people that all this stuff is supost to have helped but they must be very few. You know I think these doctors are using us as ginnypigs most of what they are doing to us is going to kill us before helping us. Have you ever had to explain to a doctor what TN is? I have on many occasions that’s what makes me so scared to go back under the knife or try any of the other options they give us. I really wish I had known someone before I went through the surgery to tell me not to do it. But the doctor were so sure of themselves I believed them now I know they just wanted the pay from the insurance.

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Hi!! I am sorry about you going through this hell. I have ATN. Light and sounds are part of my triggers. ATN and TN will cause eye pain on their own. I take ketorolac eye drops to help reduce the pain and swelling that TN can cause. You might want to go to your opthamologist, not optometrist, to see if they can help you with that. I did and it helps me a lot with the eye pain.

If there is a university hospital nearby you, you might want to check them out. If a doctor is going to know anything about TN, they will be there. Go to which is the Facial Pain Association website to look at a brief list of doctors who are familiar with TN. This is not an all inclusive list, but it is a start. If you haven’t already, maybe join a Facebook TN support group.

Try a Migraine Specialist, I get injections in the TN Nerves and also the nasal spray to numb the nerves. Also, in the head, side of face. Lasts about 6 weeks. Alot of these specialist know about TN. You’d be surprised

Hi hlt069
I looked into the site you Suggested and it really did give me more info on what is going on with me in a way I can understand. I know everyone is telling me to go to a better or different Specialist. My only problem is I don’t have insurance. The only way I have been able to go to the one I am going to now is through a group called Medical outreach ministries in Montgomery and that’s an hour away from where I live. I also found a mental health place to go to they help people with little or no income. Does anyone know of a place that is like these that have the kind of doctor you are talking about?

I’m so sorry you’re going through this. You feel alone and feel you have to fight this on your own. You don’t!! This community is here for you and sounds like your parents are too. Share with them so they can better understand.

Here is my background. I am a 52yo male. Happily married to a wonderful wife. Father of three and grandfather of three. I was diagnosed when I was fifty and was retired medically less than a year later due to TN. I am now making 25% of what I was making prior. I signed up for disability insurance in 2000 and have been fighting with them since filing a claim. Prior to this illness I never let my wife know when I was hurt or in pain. I drove myself to the hospital multiple times when I injured myself. She still doesn’t know. But since the diagnosis I now share almost all of it with her. And she has her own issues (MS) that she deals with. We find it better when we share like were both going through these illnesses together. The reason I’m sharing this with you is so you will find someone to share with. I bet your parents would like to know your good and bad times so they can laugh and cry, I’m teary eyed right now, with you. I wish you the best!!

Click Me!

Yes I have had to explain it. ANd what’s worse is they still say it in your head. But you’ve heard that doctors bury their mistakes? At least we know why they are called a"practice" I at times believe that is what it really is practicing. Hope you feel better.


                   Wheels 4 legs, said all that?

Hi Davidp
Thank you so much for letting me know your story. You are a lucky man to have a wonderful family. Before my TN I use to dream of getting married and having a family but once it started I told my parents I would never have kids or get married I would feel bad about putting my problems on someone and holding them back. I have started seeing a therapist but it takes me a while to worm up to people when I am face to face with them. I have made a sooner appointment to see my therapist I go to see her on Friday because I am at a breaking point. I plan on telling her everything. I do wish I could talk to my parents about this stuff but we just found out my mom has congestive heart failure her doctor’s told us that most people with her heart problem don’t survive the first year. She has to go in to have 2 Heart veils repaired and if they can’t fix it with the new procedure they will have to do open heart. If they end up doing open heart surgery they said her heart is to week to survive it so I may lose her even sooner. I am scared to death of losing her. This is why I can’t tell my parents how much pain I am in both mentally and physically. I can’t put that stress on my mom or dad right now they have enough to worry about right now but maybe some day I’ll be able to sit down and talk with them.
My thoughts and prayers will also be with you and your family
Thanks again cowgirlk08

Are you eligible for Medicaid or Medicare? If you are, maybe check into getting one of them. Maybe check with your county’s welfare dept or local public health dept to see if there is a doctor/medical clinic that you can afford that is close by. I wish that I could do more for you.

Dear Cowgirlk08,

There are plenty of medications for TN, which can be used. Different people need different kinds. Do not give up until you have pain that you are better able to manage. Many of us TN sufferers have dreadful stories about how we were first diagnosed, etc. Hopefully you can find the strength to keep searching for the information and the right doctors and these can help you get better control. Look on the internet, keep writing here, you can get enough help to get you through.
With many of us TN patients, the disorder goes through times when the pain lessens. Mine is much less in the winter. In late summer my pain is almost unbearable. Maybe you too will have times when you are better .
There are several operations which may bring relief. Check these out. Maybe you will be able to get one of those.
Do not give up. It is not over. You are stronger than TN is, though you may not feel that way now. We are all standing with you. I will pray for you.

Hey cowgirlk,

I am so sorry to hear about your mother. I hope everything turns out well for your mother. You and your family will be in my thoughts and prayers. When I read your story it made me feel like you were close to giving up. If you are please don’t!! When my daughter saw me, prior to my diagnosis, have an attack on the scale of 10/10 she cried for me. She knows her father is someone who doesn’t let people know he’s in pain. Her reaction hurt me. I didn’t like seeing her hurting for me. I felt like a burden to her and everyone else in my family. I still do at times. I went to a dark place for awhile having lost a career that I loved and having to deal with this disease. I found that by sharing what I am going through (some of it) with my loved ones that it helped get me out of my funk. I’m not someone who would share his feelings. I was raised that a man should be a man. As a father know matter how bad it gets that I still want my daughters to share with me what they are going through. The not knowing is worse to me than knowing how bad it is for them. Please consider sharing with your parents. Another thing that helped is when I got a dog. I lost my last one quite a few years ago and decided I wouldn’t get another one till I retired. She is wonderful for me. She knows when I hurt and will lay with me. BTW your story touched me so much that you have been the only one that I replied to. I wish you and your family the best and I pray you all have many years to be together!!

Take care my friend,


P.S. do something selfish for yourself!!

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you can get disability for TN … get an attorney if you were turned down.

Hi David P
If you are still there I hope you don’t mind me talking to you. I just wanted to let you know I’m still hanging in there. I have been in really bad pain with the weather we have been getting. I am at the nero doc right now so I thought I would write to you while I am waiting.

Thanks for listening

cowgirl, I’m a huge fan of the lidocaine patch. It has a very low reaction rate and is available OTC as SalonPas in America and Canada. It’s 4% OTC or 5% by prescription. You may want to give it a try. I cut the patch into strips and run it along the nerve brand that’s kicking up. It won’t be immediate relief but over the next several hours it will (hopefully) calm the nerve down by numbing it.

I’ve spoken to numerous pharms about it as well as my neuro – the directions of 12 hours on/12 hours off is for the max dose of wearing three patches at a time. By using small strips you can actually use the strips basically around the clock for days since you’re so far from the max dose to begin with, you can check with your local pharm about it to.

Using the patch changed my life.

Hi azurelle
I tried the lidocaine cream but it didn’t work. I did go to the nero doc yesterday and he up my oxcarbazepine to 900 2x a day, and I am on gabapentin 1200 3x a day. He wanted to send me to get a block but I can’t afford it. Have do you know anything about the block and does it work.

Thanks cowgirlk08

Hi Cowgirl08
I am glad that you are still coming on and that you are finding people who you are comfortable chatting with.
You re in such an awful ,awkward position.
I hope that you have told your social worker bout your Mom’s problems.
My pain always shoots up when there is other crap going on-and that is major crap.The lidocaine cream swish crap that I got was crap and I have no idea what it would be good for.the patches sit on the face.I use the ones with methyl something or other.they are cheap enough-if you could get someone to get you a pack-at least you can have them for bumps and bruises if they don’t work on your face.
I am glad you got your pills bumped up.
As a suggestion-and because you are seeing doctors who might not be at the top end of having experience with TN patients please print off stuff that seems pertinent to you-It could be the doctor would like to know more how it is for you.Please keep coming to the site and letting people know what is happening.Hugs