I almost hate to post about my remission since I know so many suffer without. I have GN - features of TN and GPN. I have been pain free and med free for over a year. About a year ago, I started getting twinges but they went away within a week. Now, I am getting the same twinges but they are stronger. TBH, I’m freaking out and trying so hard not to freak out since I know stress is bad. Are these twinges building to a full blown attack?? Am I just waiting for the day??? I am trying to balance relaxation attempts with coming up with a plan for this pain coming back. Could it just pass? Or is that too much to hope for.
Well, I can’t answer this for you but I have only been pain free for four months, still walking round waiting for something to happen. I am still on my meds and take CBD/THC tincture and the latter is what I would be relying on initially and increasing the dose if it came back, whether I was on meds or not.
Personally I am of the opinion that these things happen for a reason, we just haven’t figured the reason out yet. So I would be analyzing what is happening in your life, what possibly could have changed. You might start keeping a journal if you aren’t already, about what you eat and do everyday, how you sleep, etc…
Your username leads me to believe you are interested in diet. Has anything changed lately? Is your diet good? Have you changed any other medications for other reasons? Has your life and/or stress level changed much? Do you get any exercise? Have you changed any supplement regime? Do you take any pain medication or drink much alcohol? (from my experience they are mild neurotoxins). Are you getting lots of good quality sleep? Has the weather changed drastically?
Best wishes and I hope you can figure this out so that you can stay in that wonderful place of remission.
I’m one of the fortunate ones who get into remission roughly every two years - for up to four months. I have not been able to figure out why, and neither have my surgeons.
With my surgeons permission, I find it helpful to take small doses of lacosamide and / Tegretol whenever I suspect I may be getting into remission. It delays it but only by a short period.
Check with your Doctor and see if anything has changed. Good luck my friend. You are not alone.
This condition seems to be customized for each sufferer so I can only speak of my personal experience. I have been afflicted with TN since 2013. I hade MVD surgery with Dr. Ray Sekula in 2015 which was not successful. I have experienced remissions lasting for approximately 4-6 months several times during the past 6 years and I do taper down and slowly go off my Oxcarbazepine during these remissions. The sad news for me is the remissions do not last permanently and each time the twinges have started on the past I would hope against hope of them not progressing into a full blow episode but they always did. My last outbreak was so severe that I struggled for 8 months with horrific pain and 4 trips to the ER. I have since changed my diet to be more similar to the Keto diet, lost weight, be sure to get moderate exercise everyday and try very hard to steer clear of undue stress. I also take omega 3, b vitamins, and a turmeric supplement daily. I believe that working at keeping inflammation levels low in your body is very positive for this condition. I have also made the decision to stay on a low dose of Trileptal (150mg am and pm). I have not had an outbreak since December 2017. That’s a very welcome 18 months pain free! I’m personally resigned to stay with this protocol for ever as the med free periods for me always ended in long and horribly painful periods of painful. Good luck with all you try and hopefully you will find a way to manage your particular symptoms and patters of this disease
I have found that if I aggressively treat the twinge, or mild “funny” feeling I am able to hold off a full blown flare.
I have ATN, take a steady dose of 200mg Gabapentin twice a day along with somewhat high dose vitamin b and d, I take double the suggested dose of both… the slightest off feeling or twinge and I wear a lidocaine patch for at least 24 hours, often times for several days until the twingey feeling stops.
So far so good, coming up on three years with only twinges, no flares.
Thanks to everyone. I’m thinking about what might be going on it may well be stress. I have experienced a lot of stress in the past month or so. I’ve been trying hard to relax (kind of a funny thing to say), and to remember that stress is not good for this condition. I am sleeping more and giving myself more “space”. Twinges have subsided… maybe it’s working, maybe it’s all something I don’t understand. Otherwise, no med or diet changes, no other factors I can think of. But definitely an unwelcome yet very real reminder that this still is still lurking in me :(.
My Living With facial pain friends,
I do read your messages but I haven’t responded lately. As I read I find that I am not alone with the twinges after a procedures. I understand that most of our readers have had MVD. Because so many of you had that procedure , I read about it to understand what it is.
My Trigeminal pain is caused by a tumor on my brain stem resting on the Trigeminal nerve. I had a rhizotomy July 2017 and still take 2 200mg tegretol each day. My twinges are nothing like before the procedure but if they come back at that horrendous level I will certainly think about a rhizotomy again.
I would love to hear from some of you rhizotomy readers.
I like what many of you are doing to control your pain. We are in a stressful situation with the problems we have and hearing from you all helps. We will keep holding each other up. We know we are not the only people that have a terrible situation but we know that our suffering is one of the most horrific one to live with.
I have GN, I’ve had GN pain off and on for 11 years. I was scheduled for MVD surgery but the pain level had changed 6 months ago so I thought I had Eagle syndrome - so I had ES surgery March 1st and was good until 3 weeks ago when I got a sinus infection the caused me to clear my throat 1000 times a day - that’s a Hugh trigger for me (clearing my throat) GN pain returned and I’m back on Oxcarbapazine 600mg twice and for the 4th time in 13 months I had to go to the ER for low sodium. Blood pressure rose 60 points in 20 minutes and I felt like I would explode. ??? Horrible fucking disease.
It could easily just pass - be reassured of that. As you know yourself, stress, particularly if it is extreme in some way, i.e. something outwith your control (that always magnifies stress terribly) is literally enough to bring attacks on. I’ve been in remission for some years, with only an underlying sensitivity, rather than full-blown shocks. However, when I left my partner of forty years I got shocks again for months, and I was getting them from strange things I’d never had before, like solvents and paints, from vibrations and from leaning my head back! All things I was doing while doing up my new house, on my own - not a coincidence. Fortunately they never got quite as bad as my original TN attack, but they were bad enough that I had to go back on Gabapentin and triptyline antidepressants. I eventually weaned myself off them again, but there is no doubt in my mind that that was entirely stress-induced. Nowadays I get little shocks if I don’t get enough sleep, get stressed or have caffeine - all things, you’ll note, which are body stressants.
So I’d say try not to sit in wait for the pain. I’ know that is really hard. It’s the nature of this beast that you are stressed just anticipating it! But you’ve really got to be all Zen about it and say ‘what will be will be’, because truthfully you can’t control it. If it’s going to come back it will. You can’t stop that. What you can do is roll with it; accept it’s part of who you are now and just say ‘Have at it, you b*stard, I don’t care, I’ll handle it. I’ve done it before, and I can do it again.’ Just the act of sticking your finger up at it will help to lower your stress about it.
But there is every chance this is just a blip. My blip lasted months but it DID settle again. Yours has every chance of being the same. Very best of luck!
I am so sorry that horrible stuff seems to be returning. My remissions only last maybe a couple weeks. Then the pain returns in full force. I stay on my meds all that time. This is an insideus affliction. That waiting is stressful all right. Do your best to stay calm. Diversion helps. Watch a movie or listen to music. Know you are not alone!
Thanks you guys. I’m hoping I can chalk this up to stress. It would be impossible for me to say how much I appreciate your responses. The validation, the advice, the reminders, all of it. This is s very isolating condition that almost no one understands. Thank you for being here and taking the time to answer.