How have you all dealt with this for so long without losing your mind???? I am into about my 3rd month of this horrible disease and today is one of those days where I am really struggling. The pain has been so awful I can barely open my mouth. I mentioned a few weeks ago a burning pain on my TN side; I am still having that pain and more frequent than before with no relief. The pain is waking me out my sleep, I can't touch my face or rub my lip without setting off an episode! I am loading my body with so much medicine that it feels like I am destroying my stomach. I recently had a pain in my chest that was so bad I could not move my right arm, sit up, lay down or move my body without winching in pain. The doctor could not find anything wrong and summed it up to probably a side effect of the medicine I am taking (which one). I know none of this is new to any of you I just needed to vent I guess...for whatever good it will do! I am at work and it is so cold in the building that I can't stop the shocks from happening and I can't not come to work because I have exhausted my leave so any days I miss are now unpaid! I can't stop the tears from falling. I can not imagine the pain, the tears, the hard days that you all have been through and survived..Lord knows I can't!
I am with you! I am new to this as well. I was diagnosed about 5-6 months ago after many trial and error meds. I am very confused as to why certain things are happening. It’s hard for my friends and family
To understand. The best thing I can do is wake up each day and thank god I’m alive - and have a positive outlook. As soon as I give into the pain or sadness it just gets worse
Like I am the one who wrote these words … I’m really tired of fighting & meds even make it wors le for me ! Pray for me I start acupuncture session today … I hope it will work even for some years only !
You are very strong to be at work in such a condition.I've seen times i couldn't leave the bedroom.My TN over the last 6 yrs.has seemed to come and go for as long as a year so the struggle wasn't constant until the last episode.This one would improve a bit and make me think it was retreating and then slam me harder than ever.Since i couldn't have the AVD surgery due to a AVM (malformed arterial vein thingy)close to the same area i chose to have a Gamma knife surgery.Now i'm only having the occasional light shock which is a blessing.Just telling you this so you'll know you are not alone and that you can get through it.The meds are terrible,but they do help.Tylenol extra strength was a great friend to me.I hope this eases off for you soon.Don
@dodo - good luck today! Just remember the acupuncture will take some time to kick in!
My heart goes out to you we have all been down that same road. Unfortunately the first course of action is a cocktail of medications to try and find something to give you relief. The side affects can be miserable and the pain at times unbearable but you can get through this. If you arent seeing a neurologist see one asap. If the meds dont work to give you relief there are other options. Its a lonely disease because noone has a clue as to what you are going through other then a TN patient. There are answers so dont lose faith as I am one of many who are living proof. I suffered for 8 yrs like you are and had a family of 4 that I was responsible for and have now been pain free for 30 yrs after MVD surgery. Bottom line is we all have no choice but to fight and fight till we get an answer. Good luck and keep your faith you will get through this like we all have in the past.
I'm so sorry you are going through such a rough time. My TN started July 3rd this year. I have been very fortunate to have discovered Upper Cervical Chiropractic. I go to Dr. Drew Hall in Carson, CA. I have been holding a 80% pain relief for two months now. He thinks he can get me to 100%. The Upper Cervical Chiropractic is very gentle; no twisting and cracking, just gentle pressure for a second or two.
I was very skeptical but the meds stopped working and gamma knife or brain surgery scared me more.
I can’t remember if you have tried Lidoderm patch on face…saved me
Some use heat pad on face.
Do you have insurance? Can you get into a neuro surgeon for possible MVD.? I did not deal with it for long…I got into surgeon for MVD.
HERE IS A LIST FOR YOU: I gathered all these tried here
from these folks that helped pain…
Thank you all so very much for your encouragement, tips and advice! Pris…I am also seeing a chiropractor but it’s not giving me any relief from my TN.
Kc.no i have never used Lidoderm before and heat is the only thing that gave me a little relief when i was awakened out of my sleep last night. I also saw a neurosurgeon that supposedly was an expert in this and all he did was give me another medication told me my sinuses were infected and pushed me off to an ENT dr. My sole purpose in going to him was the MVD surgery but he dismissed that quickly. I am seeing a new neurologist on Monday so hopefully I can get some type of relief! I will look over the information and hopefully have good news soon! Thank you. …
Call your reg dr. Wed. And get lidocream or lidocaine face patch…you will be able to work better most likely.!!
Print that med list from experts for their own TN… ABOVE…
just for yourself
if this neuro is not sure to put you on what next you have a magic list! Neuro are not normally TN experts like some surgeons for TN
KEEP PUSHING what YOU NEED! Ask dr. Questions…take a friend or family! Usually have to try 3 meds to get MVD…even if one med is only a week that has side effect that doesn’t do good.!
Tell him your goal is MVD… TELL him you only want a referral to a neurosurgeon that has done hundddddreds of MVDs.
But before any med prescription … Get that ok t get Lidoderm patches for your face…they last months…cut them up to the most painful parts…away from eyes… Can work well for hours!! Then you can start a new med that wont be instant like Lidoderm will most do!
Keep reaching out to us…and if worse before Mon…go to ER
There will be better periods during which you can recover and reclaim your live. Do not give up. Try to find medication that works best for you. There are many options open to us. I wish you much strengs!
Do you have the possibilty to wear a buff scarve at your workplace? They really help in my experience.
I love it that there is so much support here. Just look at your venting post and see all the support you have just here, it’s such a great thing and take some comfort in that.
This just my ramblings so bare with as its four am and I have not slept a single wink yet, big sigh… It’s not that anyone whose had tn longer is used to or settles into or deals with greatly. Having tn takes pratice sort of speak of learning which medications help and to weed out the ones that don’t, learning to weed out people who not understanding in the lest bit or if their a family member letting their words and actions run like water pass you, then there’s the tricks that help the pain physically and also emotionally, because tn can beat ya down that way too, and it’s ever going growing process that never stops.
Then there is also the some bright spots that you’ll and notice as you grow through this journey. You learn to slow down and smell the roses, embrace what you can do, find out friends or meet new friends that will be your lucky star on those days your having a really rough day, week, and how great these people are, you learn to be more compassionate towards your fellow man woman and child, and you’ll find new strengths in your self ones you never thought were possible.
I try really hard to look at the positive any more as pain is negative. Some other members told me at is best to look at the positives even with tn, and this help me many a time. Little mottos you can read in you like I can do, I better then the pain, I can get through this (minute, second, hour, day, project, this assign, ect), and one of my favorites is this just a stage and this too shall pass. Other things is I have many hobbys, gardening, learning more on HTML coding, music, baking, video games, and I’m starting to learn how knit and crochet, plus I’m getting into sewing and making quilts (planning on learn how to free hand on the quilting part). This help keep my mind of the tn.
My sympathy is with you at work and in working in pain. I work in call center (I’m on leave right now thanks to the tn). It’s rough for sure, but you are stronge person and you can do this. Some days were better than others and some not. I usually made my self small goals to get to through the day to try and get through, the main goal was do not leave early. Some things you might want to consider is talking with your doctor about pain and your medication if your in pain that is than you can to be able to function at work (this is a bit of a double edge sword as side effects can make you like the walking dead), your medication might need a bit of tweaking, or maybe try some lidocaine cream or gel, there’s also patches, and there magic face watch. This might help you bring the pain down and not be zombie at your desk.
Also, if you did not know there is Grieving process with chronic illness.you may get scared,angery, depressed, and so on. There’s no set time limit for this and of these feelings towards your illness. There’s also no particular order they may go theough. You can find the info on this unders the grief or you can do a search KC did a really good discussion and you can find that by doing the sreach option on the main page for the discussion area.
So here’s the end of my ramblings. I need to get in about two mores so I’m off to find Mr Sandman, oh please. Don’t know if this help but I hope it did and gave you some in sight for you too. Keep your chin up and don’t worry you’ll start getting hang on of having hmmm before you know.
I was told that this new neurologist does botox; have any of you tried that? ?
Kc…thank you; you are always a vast of knowledge and I appreciate that! I am writing the information down about the lidocream and the patch! I am currently on my 2nd & 3rd medicines with not a lot of relief. My goal is MVD because I’ve read many people have had success. And my twin sister won’t let me go to the doctor alone so I’ve been blessed with that!
Deana…what’s a buff scarf? I will try anything!
Kari…thank you and I pray that you were able to sleep! I am trying my best to find things to keep me occupied but this pain always seems to find it’s way in! But one good thing is my family is awesome. …most of them have done just as much research as I have. .always finding something for me to try!
I, too, am about the 3 month point. It's very difficult to accept that one day you're healthy and happy, and then everything changes. I am 63 and am healthy otherwise and just quit my job last week because of tn. You are a lot younger than I am, at least I am at an age that I am able to collect SS (not that I wanted to yet). I am taking Neurontin now, will probably need to increase it. I see the neurologist later this afternoon. I am so sorry for what you are going through. There are lots of tears some days. I have done a lot of research. If the meds don't work, I will likely consider Gamma Knife radiosurgery. Remember there are surgical options to explore if meds do not work. I wish you nothing but the best, but especially some relief from your pain. Remember - you are not alone!
Sorry "buff" might not be the right word - I mean these light multifunctional scarves that can be worn as headbands, scarves, bandanas or even as balaclava. They are made of light micro fiber so they do not rub against the skin or sit too heavily on it. I wear mine whenever it is windy or cold.
more2loooove said:
Deana...what's a buff scarf? I will try anything!
That's all really good advice!
Kc Dancer Kc said:
Call your reg dr. Wed. And get lidocream or lidocaine face patch.......you will be able to work better most likely.!!
Print that med list from experts for their own TN........ ABOVE.....
just for yourself
if this neuro is not sure to put you on what next you have a magic list! Neuro are not normally TN experts like some surgeons for TN
KEEP PUSHING what YOU NEED! Ask dr. Questions....take a friend or family! Usually have to try 3 meds to get MVD......even if one med is only a week that has side effect that doesn't do good.!
Tell him your goal is MVD..... TELL him you only want a referral to a neurosurgeon that has done hundddddreds of MVDs.
But before any med prescription ....... Get that ok t get Lidoderm patches for your face....they last months.....cut them up to the most painful parts....away from eyes...... Can work well for hours!! Then you can start a new med that wont be instant like Lidoderm will most do!
Keep reaching out to us.....and if worse before Mon.....go to ER
Put Botox in search box…needles in face? Research here! We’ve done it all!
Aw thank you. So please excuse any typos I’m sure there will be a ton thanks to the sandman strike. When the pain pushes you pass the point of you being able to push back try to meditate. Just close your eyes and put your self in your super pain free happy place. Try to keep your self calm, and push the pain back to a more tolerable level. When you do this try until the pain goes back to low roar. It sounds funny I know but for me this helped a lot, especially when I was at work. I let my boss know that hey when the pain gets bad I try to meditate it away. This way at least I did tell him no I’m not just slacking because I don’t want to work, I just could not concerntrat on my work during those times and that is the reason why. At firstly was hard and did not work very well but I knew it this what many a time besides my immdentent medication got my through some of my worse days, and towards the got me through at least part of the day (before I had to back onto FMLA).
That is so great about your family! I’m very happy to heat that. Remember to always thank them for their help. Keep thinking of those positive thoughts, and just build with your family; such as the time your able to spend pain free is such a blessing, or the time they know what you need when your in pain, or better yet understand what you need or want when you’re unable to talk. Take a note book and jot just one of these positive thoughts down aday. It will help you now but also in the future when your having a rough go at things because of the tn, you’ll be able to read these and smile with your heart. It’ll help you keep going.
It takes awhile to get use to the idea of having a chronic illness, and your doing great so far. When I was first told its TN that did really sink for untill almost a year later. That denial dragged me down one of the deepest darkest holes I’ve ever landed in. It took a lot of work for me to dig myself back out of that. So to you really are doing a great job handling having tn and beating back the the tn demons. POW! BAM! SMACK! €£¥+*•#!?@&$ Take tha! HA HA! Sorry had an vision there of the classic Batman TV show and the fight scenes. Any how back to my regular post; Having TN is tough gig, but you’re an even stronger fighter and can do this.i can not say there will come a time when you get use to having tn or anything. Even to this day I still wish I was “normal”, miss my old sel (whom ever that was), and so on. It’s a growing process. There are days still were I’m a mess and need to cry, eat chocolate, ice cream if I can, and just watch movies and stay in bed. Any hoots I hope this helped you a bit. Hope you have a great day that is pain free:)
more2loooove said:
I was told that this new neurologist does botox; have any of you tried that? ?
Kc...thank you; you are always a vast of knowledge and I appreciate that! I am writing the information down about the lidocream and the patch! I am currently on my 2nd & 3rd medicines with not a lot of relief. My goal is MVD because I've read many people have had success. And my twin sister won't let me go to the doctor alone so I've been blessed with that!
Deana...what's a buff scarf? I will try anything!
Kari...thank you and I pray that you were able to sleep! I am trying my best to find things to keep me occupied but this pain always seems to find it's way in! But one good thing is my family is awesome. ..most of them have done just as much research as I have. .always finding something for me to try!
You are stronger than you think! Yes, it can be very difficult but just keep at it, keep fighting! I think we've all felt this way and continue to feel this way from time to time. I wish I would've found this support site sooner, I've been fighting for almost 8 years!
Do you have any hobbies or things you love to do? One thing that helps me greatly is hot yoga, I can come to peace with TN and know that I am strong. It helps a great deal with stress, overall health and the pain. As a matter of fact, hot yoga is what keeps me sane. Also, acupuncture and massage can help too, just do the research to find a good provider in your area that is familiar with TN.
Soak in all those good times when the pain is not so bad and Live For the Moment!
Erica
Get your Doc to help you fill out FMLA papers. You don't have to take all the leave at once...; you can take it a day at a time, when needed. It really helps relieve some of the fear/stress of having to miss work.
As for dealing with it...before i was diagnosed, i lived on alcohol and benzocaine paste. (my triggers are all inside my mouth) Benzocaine for a few mins of relief.. and alcohol when i needed to sleep/pass out. I DO NOT ADVOCATE THIS..just sharing.
And lots of time "looking" at suicide. I tell you this so that you understand, i've been in that dark, horrible hole.
That being said...keep coming here to vent and to also collect as much info as you can. AND push as much as you need to with docs to get relief. If you are in pain, pester them til they help you!! (i learned that from here...lol)
It is with info and advice from this site that i've gotten new drugs added to regimen that has pretty much kept my pain under control for months now. *happy smile*
I hope you find a good doc/neuro who is dedicated to helping you.
Wishing you peace and a pain free moment (or two..)
~Mistee