Running out of options--feel like I'm losing my mind

My TN flare-ups used to be every few months, maybe once a year. Then about a year or two ago, they become much more savage and lasted much longer–sometimes all day with just a few mini-breaks. And the type of pain was a mixture of the old one I had decided was ATN and the new one that seems much more like TN. It was all so severe and different, it pushed me to go to the doctor again. I hadn’t done anything medical in years because the episodes were so minor.

This time I’ve been to 4 neurologists. The end result is that I’ve been diagnosed with MS, with TN being one of the pieces of suffering from MS. It has been so painful I have been in tears in the neuro’s office. I hate to cry, and rarely do, even in front of my husband, and meanwhile, there I was, crying from pain and frustration in the doctor’s office. I finally had an infusion of something that starts with a ‘D’ I think and magnesium and some other drug. All I remember is that one was a pain-related drug, one was an anticonvulsant, one was an anti-nausea drug, and one was magnesium. I got relief from that the very next day, but it only lasted 1.5 days.

Once I reported that to the MS neuro, he referred me to a neurosurgeon who reviewed my file and referred me to the oncology/radiology office to discuss Gamma Knife. I haven’t had that consult yet. It’s another month away.

So meanwhile, I’m in near-constant pain, but enough off and on that I start to feel good that I’m better, then it attacks and makes me feel foolish for ever thinking it was gone.

I had a whole day free of pain yesterday–enough that I almost forgot to take my daytime dose of trileptal–then this morning it snuck up on my and now I’ve had near-constant pain for over 2 hours.

I know it’s not a new worry in this group–I don’t know what my life will be like if I can’t find a way to deal with this level of pain. I was stunned to learn that some people grow to be resistant to the meds. I am worried that this is my case, considering I am in so much pain while taking meds that had been helping. And I didn’t respond well to the infusion.

When the pain is at its worst, I hunch over and just stare and feel like I can’t move–not because moving hurts, but because my body can’t function to do anything more than keep me upright, I guess.

I hate the emotional roller coaster of feeling optimistic that things are starting to improve, then getting socked with intense pain one more time. I don’t like to share with people that I feel better because when the pain comes back I feel like the woman who cried wolf and think it is hard for people to believe I’m in so much pain when I was just fine.

Sorry if this rambles–I have been in a lot of pain and am now starting to feel a little “less bad.”

Thanks for letting me share.

Judy, so sorry to hear you are having such a rough time. I don’t have TN, I have ATN (or TN2) or whatever you want to call it, but basically a constant pain. I can understand a lot of what you are going through though–like the emotional roller coaster.

Have you tried keeping a journal of your day, and the pain levels? I do keep a journal, and now have a pretty good idea of what makes the situation worse. For instance I know that alcohol will make it worse, as well as any type of pain killer (rebound pain). I do better on days when I am really busy, but not stressed, and when I get plenty of good quality sleep.

Maybe if you track the pain, you can figure out a way to keep it at a bearable level. Good luck and keep fighting!

Hi Judy,
Sorry you are in such pain. Don’t worry about rambling or venting. That is what we are here for. Alot of us understand and know what you are feeling and going through. I hope you can find a good pain management program and have many pain free days ahead! Research all you can and feel free to ask all the questions you want. You are your own best advocate. Take care of yourself and keep fighting.

Just hold on Judy!! I know how you feel.

A post was split to a new topic: Spiritual advice


Judy, I feel your pain. We all seem to have different reasons for the TN problem. But the pain is still horrific no matter which. The suggestions given were all pretty good, but I pray you’ll find some relief soon. Just remember you didn’t ask for it, you don’t deserve it but you will learn how to have a decent quality of life as you continue to seek relief. Good luck, Gloria37

Hi Judy,
I feel your pain! I have been in pain pretty much every day since December 26. I had a few days of breaks in between, who knows why? But those couple of days have given me hope.

I too have MS which does not help our odds.

I have been having Traditional Chinese Acupuncture weekly since about the mid March. I have found that a couple shots of a sublingual, nano dose of medical marijauana of 1:20 has helped to lessen the intensity of the shocks which has helped. I am also trying to do a lot of meditating and breathing. I really try to control my breathing as soon as it starts!
Luckily for me I have been shock free for 1 week and 4 days which has been a real blessing. I will be seeing another specialist in neurology focusing on an MS with some knowledge of TN in July at Ohio State.
I have a wedding to attend at the end of June and I hope and pray I am still shock free!
Best of luck with your pain and hope you are shock free for awhile soon too!!!

Hello everyone. I am back again. Once again I am so so sorry for being gone. Since my husband has left for his job I am back to the same old. Pain, pain and more pain. It has been 2 years and 3 months, after I tried the little stent with the TENS unit, I did have some relieve for a short period of time. I haven’t even been able to try to find relief for my mouth even though the pain in back. My pain doctor is looking at me like “what the freak is wrong with you.” I will tell you why. I started having severe abdominal pain, like I can’t even walk sometimes. My legs and hips hurt so bad that the pain just radiates. I got in a huge argument with the doctor because he is basing his diagnosis on no testing, no physical exam. Just on the few paragraphs I could describe to him in my first appointment. He thinks I have what he calls “IC”, Interstitial cystitis. If he would have taken some time with me I may have felt more comfortable with my diagnosis. I am starting to see blurry and get off balance. My heart is breaking for every single one of you. If anyone that has been diagnosed with something like that as well, please let me know. I am thinking and pray for help for all of you.

Has your doctor put you on antibiotics?
You need to be very careful.did he do a urine test?
My sister gets that IC stuff.
This is something fixable-so do not try and tough your way through it.

Hi Theresa
Have you gone to your family doctor or a walk-in clinic.I just read your post again and it was the pain doctor who did the diagnosis.That doctor probably does not really do a heck of a lot with bladder issues!
I really hope you have gone to get checked out.
Does it hurt when you pee or anything?
Please do not play around with this.
The TN will make you suffer and sometime feel like dieing-but this is an ailment that can actually do it(if the doctor guessed right)

Hi Theresa
Sorry-my sister must have had something that sounds the same as.Just finished looking it up and IF that is what you have it is a whole new nightmare.Please go to your family doctor and get checked out.I won’t bug you again.
I just hate it that you are in pain when the last we heard you were doing amazing.

Hello Ellen,
I went to the emergency room in Chicago. They were of no help. I have had my urine and blood tested and it all checks out. The way the doctors describe it is like it is a fibromyalgia but in the bladder. While it is called IC it is referenced as “chronic pelvic pain syndrome”. My mouth pain is still my bff lol, it likes to hang out with me all of the time. Just sometimes, it is not quite as annoying as others. Yes, this other thing, IC is almost as bad. I don’t really have a doctor that treats everything anymore. All specialists. Ellen, you are such a sweet, caring person. I am so fortunate to have you in my network of friends, which isn’t very long. Have you heard from swayam? I am worried about her. How are you feeling right now Ellen? I know things can change from one day to the next. Please, know, you can contact me anytime!

Hi Theresa
You are so right.Doctors are no help with things they don’t know what to do with.Someone wants to do a nutritional test and I think that is a good idea.Can you imagine all of us here supporting each other?That would be awesome.Because we can get a doctor to maybe prescribe something but that only lasts a few months and the pain works it’s way through.So if we actually make ourselves super healthy then the pain might have to go somewhere else.Like a deep dark hole.
I don’t remember hearing from Swayam,but I think I don’t remember things very well.
I am glad you went and got checked out.I wonder whether a naturopath would be a good choice for you.I would love one-just so much money and basement was the cost of a new car.Might have to slow down on the medicinal marijuana as I cannot afford to take care of me and my cat
Love and hugs-just not where it is sore.

Hello Judy: First, don’t miss your Trileptal dosage. I did with mine occasionally and paid the price. I learned to set the alarms on my phone for the medication intervals I need. Do this if you can.
Second, if you have MS I will caution you with a Gamma Knife procedure. This has spotty relief petfromance at best ( didn’t work for me). A friend with MS got no relief from the GK, so she had a balloon rhizotomy 7 years ago and she’s still pain free.
I don’t know where you live, but there are Dr’s. who do this. My suggestion would be to contact Dr. Jeffrey Brown, as he helped my friend with the MS.
In any event, stay positive when you have a breather from the pain. You will be freed from it eventually.

I know how it is. My Lyrica is $47 month my Opana is $87. I found out yesterday if my doctor will write a 90-day script. for CVS it would only be $15 each!!! That makes no sense. $87 for one month $15 for 90 days. How are you feeling? My mouth started in big time again. My store is not doing well at all. It is hard to compete against thousands and thousands of apparel stores. Yes, the doctor started talking about all of these changes in my diet and lifestyle. Honestly Ellen, I came unglued. I don’t think I can take can of myself with another pain condition. There is a war going on in my head with thye pain. It’s like my mouth, my bladder, then both. I don’t know how long I can do this. It is like a fight everyday!

Hi Theresa
Today I am nausea as can be.Could not even eat the COSTCO freebies.Stick something in my mouth and have to spit it out.What is the point of COSTCO membership if I cannot eat a free lunch every once in a while?had to go because the Aussie Bites are about the only thing I can consistently stomach.
Why don’t you just go slow on your business(because I don’t know who will buy boots in the summer?)Maybe you could advertise in Canada or something.
Have you tried B12?
That is my next thing.Waiting on the blood tests
And going to sign up at the Naturopathic College in the fall.Treatment will be cheaper and I need to do everything I can do.I hate it that my hand goes numb.And sores all down my right leg.
It is like nutrition is not getting to the right side of my body.
I do not get the pricing of the drugs.You need to tell your doctors.
It is too much for anyone to manage.
Does your doctor tell you to go to Toronto for a bit?
Come and visit.
place looks like a slum,hoarder right now.
I am slowly trying to get every thing back down in the basement.
As long as you are not allergic to cats -cause my old girl is shedding like crazy.
Think about it.
We can go beach glass collecting.
Just sit and listen to the waves.

I was feeling pretty good–reduced my daytime Trileptal to just the AM dose (.75 of my nighttime dose) and my nighttime dose. Nothing in between. Well apparently I was still living off of the Trileptal that had built up in my system, or something, because the pain hit today in a pretty big way. Have weird sensations all over the right side of my face. Opened my mouth after sitting for a long time and had a bizarre strong pain in my jaw. Muscle is all swollen and weird. Having numbness/tingling in my hairline along my forehead. This is all in addition to my normal pain. Grr.

So, back on taking the Trileptal multiple times/day to see if I can get it under control. I’m having a kinda-sorta second opinion at Cleveland Clinic in 2 weeks with an MS doctor and a face/head pain doctor. I’m curious to see if they have any recommendations that might differ from my doctor here in Columbus (whom I really like, but he’s mostly an MS expert, not so much a TN doctor). Hope I can get some relief from someone.

Oh, Ellen that would be great to get together sometime. I have never been to Canada. I know it looks beautiful. I wish I could help you somehow. I would love to go hunt for glass on the beach. My best friend and I go looking for glass, sharks teeth, and other objects in the sand while we walk along the beach in Florida. I do have free long distance so I can call you if you need me. Let me know and I can message it to you. How has your pain level been?

My pain has been up and down.I got some medical marijuana that works .Makes me dopey,but a change from the pain.
How have you been
I hate it that we suffer so much and for what reason.
Went for a walk today with a neighbour and it was nice.And finally my living room is livable again.Moved out all the basement stuff and now a dust off tomorrow.
And the beach glass I found that I had forgotten I had

so beautiful
A purple piece ,too
I think tomorrow will be a beach day.Screw the dusting. for another day.Finding a shark tooth would be awesome.Sometimes I find pieces of guns and I get scared and toss it back.Shark teeth in Lake Ontario would make me wonder.
I hope you get to go out with your friend sometimes.The sound of the waves are the best for me.