What time is it?

Posted , 10 users are following.

Hello Neuralgians,

A series of questions, because like TN-Sucks is feeling, that is where I'm at with this "monster".

1. Does yours strike mostly in the PM?

2. If you have had this "monster" for more than 5 years and have had procedures done that failed, what is your remedy for staying in the game? 

3. If you have had a procedure that was successful, and it has come back with vengence, what is your remedy?

Thank you for any responses.

God Bless,

Greg

0 likes, 18 replies

Report / Delete

18 Replies

Next
  • Posted

    Hi Greg,

    Yes pain is worse around 5pm till I fall asleep and that's usually between 2am to 6am. I had to quit my executive job a year ago because of this monster. I had 2 failed MVD's and was very suicidal for 4 months because no drugs could help with the 24/7 severe burning pain. It feels like I have a metal coil in my mouth spinning like a tornando that goes from my mouth to my entire right face and sometimes I can feel it in my scalp and head. This is all due to complications after both failed MVD's. I have been living with this involuntary movements since Sept 2014. I finally learned to cope because I have 2 choices. Live in hell and let it beat me down to the point that death sounds better than living, which was the scariest feeling I have ever encountered. The only reason I didn't try anything stupid was because I am blessed to have a great husband and two wonderful children who need me. The other choice was to beat this monster by living the way I used to live. It is very difficult when we are in pain, especially 24/7, but I advise all TN'ers to keep busy as much as possible. Although, I don't work, but I try to keep busy as much as I can. My current meds are Gralise (my pain management doc switched me from Neurontin to Gralise) and oxymorphone, which is narcotic, for break thru pain. Currently I still have pain 24/7 but now instead of living with the severe level 10 daily, I'm at a 5 or 6. At night it can go up to 8. I also put on a compound cream, lidocain and prilocaine, on my face and lips. This help numb the areas that are painful so I can go to sleep.

    Good luck to all and I pray for painfree days for us all.

    Nina

    Report / Delete Reply
  • Posted

    Hi Greg, I do find that the monster strikes me mostly in the PM although not exclusively. Having suffered off, and with age increasingly on, with it for the past 15 years I am only just taking it further, with a recent MRI scan to help with finding the cause! I really don't have any answers...I'm just trying to stay sane. As I'm typing this I am having to stop frequently because of the pain...I hope others may be more helpful than myself.

    Take care

    Lynn

    Report / Delete Reply
    • Posted

      Hellsfairy,

      What did u do to make it this long?

      Did u get it when turning ur head toward side

      That TN was on?

      Reason I asked is bcause My affected side is side I sleep on. Lookimg at television I was always pointed towards the left.

      I will also be changing up Furniture Direction towards the TV.

      God bless

      us and keep us and give her the peace

      Report / Delete Reply
    • Posted

      Hi, Although I have had TN for 15 years, I did get lots of periods of remission, so I suppose I just 'coped' until these last 18 months, when things have got really bad. 

      The TN just started right out of nowhere to be honest, there was no particular 'reason' for it, no particular movement or anything to be honest. It basically just hit me like a train one day. These days it seems to be worse in the evening, although not exclusively.  It affects the right side of my face, but I always sleep on my left side anyway. 

      I'm sorry I can't be of anymore help...I think this disease affects each one of us in a different way, apart from the fact that it is so, so painful.

      God bless

      Report / Delete Reply
  • Posted

    Hi Greg,

    My take on this:  we are soooo screwed!  I did the Radiofrequency procedure where they burn the nerve into dysfunction which is low stress, in and out of the hospital as an outpatient and works great for a year or two more or less. It got me off all those awful drugs. My jaw is numb where the nerve was so I can't eat well. I have to hide my face in restaurants behind a napkin. Hahaha!  

    Overall, for me, this is a good option, far from perfect but a quick recovery and no drugs! And no TN pain for a while and a neuro surgeons office that responds quickly when it comes back. 

    Problems..eating in front of people sometimes, the muscles on the opposite side get pulled out of shape and become soar, I never know when it will return so hard to make big plans like going out of the country, or long trips and lastly, the numbness, etc. are a constant reminder of how screwed Ii am which is a challenge in staying upbeat and positive, but I do my best.

    best part...NO electric shocks like a live wire was pushed into my jaw. And yEs, night was bad, once I ended up screaming on the floor, well several times, had to take a tranquilizer so I wouldn't freak out and could get some sleep in between pain shocks.

    but after surgery, it was all gone

    and I await as peacefully as possible until the next time!

    good luck!

    Report / Delete Reply
  • Posted

    Hi Greg and fellow TNers

    I've only had the beast for about 3 years. Mine is maxillary on the left hand side and it's really localised closely to my upper left lip; and is often triggered by moving skin on upper forehead (eg washing hair, yes still got some). Recent MRIs and my clinical symptoms confirmed I had the regular, rock-n-roll TN and my nerve was constricted by about 50% by the pesky artery that had probably been doing this for some decades. I only tell you all of this because perhaps my shock pain scenarios might be a bit different from others with other complications.

    I can go for a month with nothing and then get the full stabbing event which nearly makes me drop to my knees. It occurs anytime of day or night. If I'm having a bit of a bad time, I crank up my Carbamaz to about 1800mg per day but even then I get breakthroughs. My sessions last more or less continuously for about a week (I mean severe stabbing sessions whenever I eat or drink or try to speak clearly on the phone). Once I get to sleep I'm fine but if I turn over onto left side then I wake up pretty damn quickly.

    Had enough of this and going for MVD as soon as I can.

    Hope I haven't taken up too much of your time

    This is a great site and very good contributors, thanks to all of you for the valuable help and encouragement you've provided.

    Keep safe

    Cheers

    Big D

    Report / Delete Reply
    • Posted

      I'm a big bloke and can take that dose for several days. I did enquire about that but my GP said my liver was coping well and generally healthy so go for it, if it helped. I usually drop back to a maintenance dose of 400mg per day. I do get horrendous anxiety type dreams though, when on high dose and a facial red rash with dry skin. Don't care about that, I just want my cranial nerves to shut off a bit. ....and so I nick my wife's soothing facial cream at night ....what a picture of horror that must be.

      Cheers

      Big D

      (aka army183)

      Report / Delete Reply
    • Posted

      Hello Army183,

      Please do alot of RESEARCH on a MVD. Do not take your Neurosurgeon's word as the gospel. It is a VERY invasive surgery. I had it done by a well respected and one who has had alot of successes. However, it failed. Who knows why.

      Again...RESEARCH, RESEARCH, AND MORE RESEARCH.

      I hope everthing works out for you.

      God Bless,

      Gteg

      Report / Delete Reply
  • Posted

    Greg 66242

    What can I say I had less than one year

    Any time but less when walking 12,000 steps a day, did get a few times when walking n talking on cell.

    First procedure so far shocks r gone but a bit of ache in gum is pressent but a bit milder do far.

    God bless

    us and keep us and give up peace

    Report / Delete Reply
  • Posted

    Greg 66242

    What can I say I had less than one year

    Any time but less when walking 12,000 steps a day, did get a few times when walking n talking on cell.

    First procedure so far shocks r gone but a bit of ache in gum is pressent but a bit milder do far.

    God bless

    us and keep us and give up peace

    Report / Delete Reply
  • Posted

    Hi,

    Any time of day for the shocks and stabs across the head/scalp and over my face on a daily basis (I'm one of the lucky few who has it bilaterally and in all three branches, Yay!!), BUT, the left eye stabs more often than not wake me up at some ungodly hour and keep me busy being incapacitated for anywhere between 6 to 18 hours, which is sooo much better than the 4 - 7 DAYS before I started medication. The shocks and stabs everywhere else would, thankfully, be just one or two at a time, but the left eye gets special treatment, hundreds of stabs again and again and as I say for hours at a time. I have also had bouts late pm, though, around 11pm.

    Not had any procedures yet.

    Best wishes.

    Report / Delete Reply
    • Posted

      Hello Susan,

      Well, I have finally met another "bi-laterally" neuralgian. Oh, how we are...you know!

      If you are thinking of doing ANY procedures, PLEASE RESEARCH procedures, and Doctors' who have done the procedure hundreds of times.

      I hope you find the right way to go!

      God Bless,

      Greg

      Report / Delete Reply
    • Posted

      Hey Greg!

      Thanks for response to me and to Susan. I get the concern you have shown about surgical risks. Thanks for that.

      A bit concerned that your MVD failed. Did you have a clear unequivocal demonstration of the artery compressing your trigeminal nerve? What did they find when they got in there? Was it straightforward? Did you have a re-routing of your artery or a Teflon sponge inserted between it and the nerve? sorry to ask so many questions but I and maybe others might concerned that such a direct action would have been undertaken in the first place if the compression was not definitely observed.

      You might notice that I'm doing this message quite late because I'm having a rock-n-roll TN session right now and can't sleep. Not too keen on continuing the usual round of drugs which have variable effects and don't stop the big breakthroughs. That was why I was saying that I should be going for the MVD. It seems to have the best success rate according to my searches of the papers (on PubMed, st least).

      Look forward to hearing some more from you

      Cheers Pal

      Keep safe

      Big D

      Report / Delete Reply
    • Posted

      I thought MVD would be the best choice too until my doc discovered the MS symptoms.  So I HAVE to do a different surgery called radiofrequency.   It is very low risk BUT doesn't last.  I was hoping MVD would be one that would last a long time.  Now that this new thing was done, I can't even do MVD.

      Alas, have to live with TN for ever now with periods of relief and drugs when waiting for a surgery.  Crazy BUT have adjusted.  Will never be what I once was.  I grieve for that person but, as we humans do, I accept and move on.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up