My story

Thank you for sharing your story. I understand how exhausting it is to feel that you can't let people know that you are hurting emotionally after they go through so much with you. Your husband sounds like a lovely man, but you need a place like this where you can freely share and be accepted unconditionally. I appreciate your brutal honesty!

Hi there , thanks for the comments but I don’t feel very inspiring. I feel pretty low and worn out.its hard not sleeping properly and being in pain . I sometimes just want to give up. My arch bars are off which a good but my lower lip on the eft is very numb and I can’t even kiss my husband properly it is feelingless. I jst don’t know what to do really, but tanks . How are you? How long have you suffered with TN ? Is your pain controlled ?
How did you start with your pain?
Right off to get mt tens machine have a good night x



Kc Dancer Kc said:

Foxy:

WOW - I have heard of mannnnny sad stories on here - and many stories of resiliance - yours seems to be at the top of the list of the hundreds and hundreds I've read here

Is there a local support group for you - you can look on this link http://www.livingwithtn.org/groups/group/listByLocation?location=re...

-- we have quite a few here from all over the world.

You are inspiring : )



hi yes my husband is a wonderful man , I am lucky without his support I am not sure what I would have done without him. It's hard on our loved ones and sometimes it easy to forget that they too have officials times looking after us. They too need some TLC . Thank you to everyone who has taken time to read my story and for all your support you have hen me it has been helpful to let go of some of my feelings . I was at a loss on how to carry on . i hate moaning and know that really many people dont really want to listen to my problems they have their own issues. But it is difficult as when you are in pain you do tend to isolate yourself which on reflection does not help but compacts the issue . I don't feel I can talk to my gp as firstly you only get a TN minute slo which really doesn't even scrape the surface so do not feel that it is appropriate . My onultan is going expedidate an appointment with his colleague in pain management and his psychologist . The trouble s I feel that if I start to cry I won't stop . My coping mechanism is to move on after each procedure brush it under the carpet and forget it . Well I have rambled on . Where do you live? How o you cope with your facial pain? Dies the weather affect your ain? Well aske care and tens for touching base . SweetAcacia said:

Thank you for sharing your story. I understand how exhausting it is to feel that you can't let people know that you are hurting emotionally after they go through so much with you. Your husband sounds like a lovely man, but you need a place like this where you can freely share and be accepted unconditionally. I appreciate your brutal honesty!

God bless you! You have really been through it haven't you? Feel free to vent on here. That is what it is for. Good luck to you!

OK Foxy...From time to time, KC Dancer KC's friend Carly Simon visits us.

http://youtu.be/M4HLHuS3hkw

Thanks BIll , watched the video it was well received . Just how I felt . It is true when you are in pain that is all your mind focuses on and your whole life revolves around it. Thank you

Well hello . Just to fill you in on my story I visited a psychologist today . It felt very strange going to see someone to discuss my mental health and I felt very uncomfortable. She was really normal not sure what I was expecting she was really nice we discussed the use of something called eye movement something . She explained that if she can help people cope with pain then you can cope with some other things. There are three types of ways to administer this technique visually by getting eyes to move bilaterally , tactile by touching both sides of the body and by sound . Apparently it retrains your brain not sure how but when we sleep we use something called rapid eye movement and this is when the brain reboots or deals with traumatic issues so by reproducing this situation then hopefully she can help . So booked in for 4 sessions if it does nt work nothing lost. But if it works then I guess that is good. We discussed how pain makes you feel. Angry, sad, depressed, at our wits end . Yes ticked all those boxes well if anyone else on this site has tried this I would be interested in your comments . Thanks x

Look up EMDR therapy, I watched a professor demonstrate it once - the more you learn about your treatments the better off you are. If EMDR doesn't work for you - sometimes going to a pain management support group - or having one on one sessions with a therapist can be verrrrry helpful. Speaking professionally and personally here : )

My journey with TN was short - but not sweet - Oct. 2010 Frenzied oral surgeon in a hurry yanked my neck around - went to Emeergency room 4 hours later with Tazer like pain on the OPPOSITE side where he worked on me. the heavy narcotic in the ER only helped for one hour!!

Within a month I was diagnosed by neurologist that the idiot sent me to. That was in my favor - I think he had a clue what he did. Between this site, my neurologist and the website TN Association - I started digging around on what to do. I had to quit my brand new job as a social worker - I could not drive clients around on these meds. I was 48 and had just graduated.

So I got on Trileptal and it took my IQ away -- I cannot believe that I went on job interviews - they must have thought me batty - trying to search for words - I didn't realize how bad till I couldn't remember my dogs name - I was only on a middle dose - so off here - I got the idea to ask for ritalin from dr. and that enabled me to concentrate and research surgeons.

I also got the idea from here to get Rx lidocaine patches for my face - saved my life !

My neurologist said there was nobody in this area whom he would trust with an MVD (I had/have type 1).

So I emailed one of the doctors who learned under the inventor of MVD. I had watched his lectures and liked him. I asked him where I should go - I was devastated that there was nobody near by. He said - email me back these questionaaires and I'll do it if it sounds like a solution.

I hated those meds so much I flew to Michigan from Missouri and had my skull opened up!!!!! It really wasn't as bad as living with the TN. Just a small space behind my ear now that has a scar. hubby Drove home and stayed in bed two weeks.

I just had my one year - OCT. post MVD - and all is well. However, 50% chance will need another within 10-15 years or even next year.

I still come here to help others because I want people to get better faster - fire incompetent doctors immediately, and find pain-helping measures for themselves.

I stomped around till I got what I needed - you cannot be passive - must self-advocate and come here for support!The more you read/study/learn about all aspects of this - the better life can be.

i m soooo happy things worked out for you dear and it s sweet that you still take the time to come on here and share your story and issues thank you Al

Hi there thank you for asking the time to keep yes updated, sometimes on forums it is difficult o see positives stories as when people feel better they no longer use the site. Yes I agree with you about being involved in your own care , although sometimes can be difficult or impossible . If you have a timid personality you feel afraid to add your input or if you have been brought up that drs know everything and they are similar to god it can be difficult. The other side of the oin is sometimes your dr will not give you the opportunity y to give your input . I know you say get a new one but some people will find this hard. I use to tell my patients to write their questions down before hand then take som done with them and if they felt awkward asking the cquestions just pass the paper to ask him to answer your questions . I have used this myself especially as I find it hard to talk for long periods I use my I pod , I also can’t see without my glasses and I hate sing them so I say I wrote a few questions down I wondered if you would mind reading them I forgot my glasses , it usually raises a smile good ice breaker.

Well thanks again for keeping us up to date with your progress I hope you continue to be pain free for a long time to come.
I also use the versartus patches they are good , the only thing is you get some very strange looks from people so I tend to only use them when I am in the house .
Merry Christmas x

OH - there is a clear cream lidocaine - not as powerful - but better out in public LOL ---

Thanks for that I will get go to prescribe have a great Christmas love foxy x

Foxy Hi, just read the long thread and saw the comment you made about the psychologist and it reminded me a therapy I was offered, that is some sort of hypnosis and reprograming of the brain that's the name it called... I also as a lot of us here was hurt in that trigger zone - teeth. I have constant burning pain for almost 7 years, it's to be stuck in a limbo as i see it. But enough about that, i have a friend in another site (Nord inspire) that her nerve as i, was injured in a regular dental procedure, and after 10 yeras of botox and implant of stimulator and lidocaine IV, got the help from that reprograming of the brain, i am still thinking about it and it is the weirdest thing i ever have heard of. i would realy like to know how is it if you will go thru with it.....I am really interested in that. i want to ask your friendship, but i reached the top...lol

Bless your heart, you and all the rest in need (and me) for salvation, and even though I am jewish, we are all the same so I believe we all have the same god, and i wish you that this new year and Christmas will bring new solutions upon us

Hi there thanks for replying of course we can be friends no problem. I am going to try the psychologist nothing ventured is the saying . Yes I will let you know what happens I am open minded so we will see. Would be good o ask your friend how many sessions she had to have if you don’t mind. This lady is charging me 50 pounds each session and we are tring four so hopefully i will know if it is working . Merry Christmas to you to .

It sounds like u have been through the mill!! I was initially diagnosed with facial athromyalgia of the tmj and for years I have been pushed from pillar to post and made to feel that my pain is in my head!! I can also see why you are keeping the pain from ur husband as I try to do the same. It must be horrible for u having to have undergone so many surgeries with still no answers. Easier said than done but stay positive xx

Thank you . You mention that you too have had issues with your tmj . Ave you seen an oral surgeon who specialises in tmj? And have you had scans to see if the disc is deranged . Where do you live? Is it in USA by any chance?
Take care xx

Hey foxy I’m in the UK. Sometimes wish I was in USA due to the advancements in medicine! There is definitely an issue with my tmj due to injuries. However I am having an MRI in feb and from recent examinations TN seems to be said frequently from the symptoms. I’m also under a facial maxisurgeon in a teaching hospital therefore there are usually med students throwing around ideas.

Can I ask where in uk you are ?
Glad you are having a MRI at least they will be able to see exactly what the tmj looks like . It is so hard to decider the pain is it TN or is tmj ?
Glad to hear from you x

Hi guys , sorry I have not been on the forum for a while but been busy having surgery and many visits to the hospital. Since December I have undergone bilateral coronoidectomy using a bicoronol approach ( that is where they cut from ear to ear and peel down the skin of your face to access what appears to be a bone that looks like a sharks tooth. This was done in march and I have been struggling with the pain. The right side has improved which was really good but the left side , always the left has not . I have been back to my consultant and he said that we have to use the medical pathway but the use of medication has not been one that is easy. The side effects are really difficult . I went to see my pain dr on Monday and he said we are running out of options so we are trying oxycodon which he thinks will probably not be Ny use due to the side effects I get with morphine based drugs but we are giving it a go and also a drug similar to pregablin beginning with l sorry forgot the name. He mentioned the use of neuro stimulators . But unsure who does them for tmj and trijeminal neurolgia in the uk. It seems like iam going round in circles. I can not chew Ny food I cannot bite anything and I M in pain. Can’t sleep it is just one big mess. I went to see a friend yesterday who is in hospital and she was complaining of pain in her jaw. But she never stopped talking for An hour and this may sound so mean but she did not appear to be in any discomfort she was eating large chunks of chocolate Nd I thought to myself if I was in her position I would be so grateful . I know pain is perceived differently for everyone. And I do not want to judge but it made me realise just how strong I am really going through all what I have I am strong and I don’t throw the towel in . Sure there are many days when I do feel why me why can’t they sort it. But on the whole I try so hard to not let this pain take over my life because if it does its won . Peopl ask all the time how’s your jaw not how are you , I think they forget iam a person with a jaw problem not just a jaw in pain. So if anyone here has had experience with the stimulators. Would be really interested to know how successful they have been .
It’s strange I found this site by accident back when I was so desperate aNd I have found the information on here well researched and well written. As strange as it sounds it has saved me, I know I am not the only person having difficulties. And the support I have recieved from the members has been really fabulous so many thanks

Foxy, you can run on the search up on the right the terms of - MCS, motor cortex stimulator, PNS, peripheral nerve stimulator, deep brain stimulator, DBS, neurostimulator

and you can look in another big site named livingwithtn

Good luck