Ready to just end it all

General General TN & GPN (Old Site)
1

I am just at the end of my rope I have had the most stressful week I feel like I am being passed from dr to dr and no one will help me all I do is cry which makes my pain that much worse I am extremely stressed out over some personal problems and I just feel like I can't take anymore everything feels like it is crumpling around me.....my pcm dr wont call me back and I don't see him until Fri I am in extreme pain the medicine I have isn't working the nurse just keeps telling me to go to the er I was already in the er last week I don't want to go back at what point will I be treated like a drug seeker plus who wants to sit in the er for 3 hrs why is that acceptable pain management to them I can't get in to pain management until Oct 26th and I was referred to a neurosurgeon but nobody will tell me why?? I saw a psychiatrist the other day I feel jeez just another dr to add to the list I just feel like I am going under what do you do when you feel like just giving up?

2

Try to hang on and believe that one of these things will lead to some improvement. You are trying to find someone who will help you and documenting your condition. It's good to be sent to the neurosurgeon -- they see that you need more options, right? You don't have to agree to any surgical procedures, but it's another person to try to help you and lend a different perspective.

I have more decent weeks this fall than I did last spring. One day at a time, believe that there are good days ahead of you.

3

I am so sorry you are dealing with this much pain, Mac is right in saying that sometimes we just need to take it one day at a time. It can be too hard to deal with the though that we might be in pain another day.

I can totally relate to the whole thing of going from one doctor to another, it is time consuming, exhausting and expensive. The upside is that it give you a chance to find someone that can really help so don’t give up.

Can you think of something to do that helps you relax, even if just for a little while. Maybe watch a movie, sit outside if the weather is nice, listen to some music, Anything that makes you feel good.
I was having a miserable day yesterday, lay down on the bed mid afternoon to have a little cry and noticed a baby bird in a nest in the backyard. I spent a couple of hours watching “Oswald” (couldn’t resiste naming him) and his parents, it really helped to distract me from the ongoing pain.

If your doctor won’t return your calls maybe the only option is to go back to the er but I would be looking for a new doctor. The practice that I attend would always arrange for me to see someone on the same day if needed and they still do house calls, you need someone who truly understands your pain.

We are here for you.
Hugs Trish

4

WE NEVER KNOW HOW STRONG WE REALLY ARE UNTIL BEING STRONG IS THE ONLY CHOICE WE HAVE!! TN will push us to the edge and somehow we resist the fall!! I have those days but, I have also had the good ones!! I have chosen to be a fighter!! 5years since diagnosis and too many failed procedures to name…but, I fight to make the best of the good days. Don’t give up!! Don’t quit fighting!! Someday we will find something that helps!! I’m really excited to know that researchers promise a cure for TN within the next 10years!! We are all here fighting with you!! ((HUGS))

5

" When you get to the end of your rope, tie a knot and hang on" Franklin D Roosevelt

I completely understand, I really do.

Who cares if ER might think you’re a drug seeker! YOU know you’re NOT!
You need pain relief ? Go back to ER, explain that you don’t see your doc for another 2 days.
Tell them You have TN and the pain is out of control!
Unfortunately we need to advocate for ourselves as difficult and discouraging as it can be, you can and will get through this!

One day at a time, with each other as support.
((( hugs )))

PS have you ever tried a heating pad or gel pack you can microwave to help ease the pain a little? This sometimes works for me…

6

It's so hard, but just hold on tight, you'll find a med that helps manage your pain. I've been passed around doctors too, and it's the worst. It's nothing wrong with you -- it's just a bunch of idiot doctors who are afraid to stand up and make a decision. Just because they are bad at their job, don't let make you feel less validated. Your pain is real, and you WILL find someone to help you.

Friday is not that far away. Just hold on. Make the time pass by researching all you can about TN/ATN so that you can get the fullest out of your doctor appt. If you are getting electric shocks, make sure you ask for Tegretol. If you have a constant, aching pain, make sure you ask for Amitriptyline. It's likely you might need both.

Don't start two new meds at once. You need to know which one is working, if you don't, you could be on meds you don't need, and getting unnecessary side effects. Most of these meds take a few weeks to start working. Your doctor might push for Lyrica (expensive) or Neurontin. Those are good meds too. Again, one at a time.

I would also ask for Klonopin. It's a benzo, but it also has anti-convulsant properties. It really does help with the pain, but it also calms down your anxiety - anxiety is not good for the pain. You really need a med in this category. (valium, xanax, etc, but preferable Klonopin)

If you feel like you're getting doctor referrals and you don't understand why, you need to ask. They are probably referring you to a neurosurgeon because he's most likely going to be the one that has the most experience with TN/ATN.

If you go to the ER, ask them for the meds discussed above - those are the meds that are going to really help your pain. I do support taking opiates, so don't be afraid to use them for pain. Who cares if they think you're a drug seeker? You're in distress and you need help. I personally never go to the ER, because like you said, why sit around for three hours when they can't even help you, not to mention the cost. If you have an Urgent Care, that might be a cheaper option.

You're strong and you can do this. I know it's scary and I know it's hard. Friday is almost here. Educate yourself to the fullest so that you can have the most beneficial appt possible. There is a tab at the top of the page called "face pain info" - that is a great place to start.

And finally, remember that you are not alone. This is not a permanent situation. It will get better once you're on the right meds. We're all here for you. Please message me if you need to talk.

7

I can totally relate to that feeling that your being passed around!! Do YOU have SUPPORT around you? If it were not for my mother/husband I don’t know what I would have done. If you can reach out to a friend or family member to help you get help etc. also, I have started a file from the beginning of this nightmare with all my Dr. Notes, etc so I can just keep things straight. Keep posting this is a great place for support and answers!

8

I’ve been thinking about you today and hoping that the pain has eased. Hugs

Do you have anyone that could go with you to doctors appointments or the ER? Sometimes it really helps to have an advocate, it can get overwhelming dealing with this on your own.

I also wanted to apologize about my early posting, I didn’t mean to imply that watching a baby bird would solve your problems I was just trying to say that I hope you can find something that can ease your misery, even if only for a few moments.
Again my apologies if my post offended, I know how hard it can be some days.

Sending you a healing cuddle.
Trish

9

Try to get some LIDOCAINE cream / patches from ANY doctor -- HELPS MANY! Immediate Relief!!!

Keep Posting Here!!!

10

I am so sorry that you are in such pain and feeling so low.i have been there.i got some relief when I saw the pain doctor he knew what drugs to try and within days i could feel it working.i t does feel kind of unfair that one has to PROVE their pain to get it treated in the first place only to later feel like some kind of drug seeker by members of the health care community.you asked about referral to the neurosurgeon perhaps it is to look into the possibility of surgical intervention.It seems to me that doctors these days need to cover all f their bases with all of the different referrals.To your question about being at the end of my rope I think about the people that love and need me.I also know that i go thru some very rough periods of pain and eventually they will ease up to a tolerable level.This is a heck of a way to live but it is what it is.I also don't think people who haven't experienced tn pain can understand how truly awful it is.I also try to distract myself from the pain by doing something i enjoy even if I have to force myself to get started.I hope this helps hang in there God Bless.karen

11

DONT STOP ASKING FOR HELP...KEEP ASKING OTHER DOCTORS FOR HELP...JUST BECAUSE YOU HAVE NOT FOUND THE RIGHT ONE FOR YOU certainly DOESN'T MEAN IT IS YOUR FAULT! You have the right to NOT be in so much torment and pain!

I agree ER's are not the answer. I agree MOST Dr's don't have a clue of our TN face pain. I agree you need help AND if you don't have an advocate to help you, check the site here to see if anyone in your area has a doc that does get it and is trusted you can go to. I know external stresses CAUSE more pain - BELIEVE me I know.

Hang in there kiddo! You are worth it and THIS DISEASE DOES NOT DEFINE US...it is here; but we cannot let it win and give in to the pain.

You are cared for and we all understand - ((hugs, my friend))

Cris

12

I am brokenhearted to read this. I want to come over and hug you. You will want to scream but as they say when you are at the end of your rope, tie a knot and hang on tight. Before this site even started and when I knew little about TN, I thought I would suffer for ever. Then I clued up, although I do know you already are, found a great neuro and now live a normallish working life and help out on here. There is always hope, I had agony for years before the right help came along.That will not happen to you with all these Dr's on board to help.

Please be strong and hang on for us. So many of your friends have reached out to you, caring and supporting you. As ever I am amazed at just how wonderful our members here are. Take care xx

13

Please hold on, it will get better. I have been in the place you are at , years ago everything in my life fell apart and I had zero support, I had to do it all on my own, but I am thankful I didnt give up. Believe me, i wanted to die, but i got help, therapy, and now I can say that other than this bugger of a disorder my life is good. It will get better.

I was told at one ER before I was diagnosed that i was just seeking drugs because I was taking a narcotic for the pain, I was so pisssed I walked out, then reported them to my insurance company...get mad and get even is my motto.

If someone wont help you, find another, there is always someone out there who will treat you as you deserve to be treated.

Every one of us on here has been at our wits end at some point, and we are all still here...you will be too, you can do this and one day you will look back and realize how strong you are.

sending much love and hugs your way, keep us updated on how you are doing and your doctor apppointments

Wendy

14

hi ya please take care and there will be some time when u will get releif from your pain.god bless xx

15

Hi,
How you doing today?

Trish

16

Thank you all for the kind words I really appreciate every single one of you it makes me feel better to know that I have people who know how I am feeling....last night and today have been horrible with pain I was in and out of it last night but my husband did not get home until almost 11 and had to be at work at 5 am I just didn't have the heart to ask him to take me to the er I am awful pain today and never heard from my dr his office closed at 11 did I mention my husband is in the military sometimes the ins sucks I am glad we have ins but sometimes it can be awful...I still can't stop crying but again all of your kind thoughts and words have made me feel better I take tegretol neurotin percocet ambien cr and baclofen and am getting ready to start cymbalta sometimes they help sometimes they don't last night and today they aren't doing a whole lot the horrible electric shooting pains are awful along with the burning I just don't know what to do...

17

Oh and Trish no offense taken I appreciate your kind words and post they are helpful :) thank you

18

I know EXACTLY how you feel!! I went to the ER and they literally kicked me out after giving me a shot! I knew that the relief from the shot was just temporary! I wanted to be admitted or something similar. I am lucky enough to have a doctor brother who called the doctor who told the ER not to admit me and set him straight in doctor terms. A tip I learned: Urgent Care on my insurance is the same $$ as a doctor but you don't need an appointment and you can get a shot from them (or Lidocaine). I also found out that I could go back as needed in the next 5 days after my visit for FREE!! If I hadn't been in the hospital and then on crazy pain meds until my Neurotin kicked in I would have been there EVERY DAY!! Hope you get the pain management you need! Call around to different places! I saw a Neurologist the day after I was told to go to one, because I called 30+ different places. Good luck!

19

I agree with Crystalv, go to the ER and ask for Tegretol by name and tell them u suffer from TN. They should relate the 2. There is no pain meds that clearly work. After 4 trips to the ER crying more and more someone offered me Tegretol to see if it would kill the pain. I was given every pain med out there up til then. I know they felt I was after pain meds as an addict. I took it and by the next day, I wasn't crying. This was before I knew what I had. It was awful, and I hope you get some relief very soon.

20

Hold on. I was at the same point as you in July. Once properly diagnosed by my neurologist and given tegretol, the pain started to become manageable. Unluckily I was allergic to tegretol and now am on Neurontin. I feel like a zombie because I am on such a high dose. I went to emergency room twice because I could not get immediate appointment. At least they gave me some medication that took the edge off. I wish you well and hope things start to improve.