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I would like to find sufferers of Trigeminal Neuralgia

Nov 23, 2019 4:47 PM

Looking to put this out there for those who can't find resources. T N is called the suicide disease for a reason and I want those suffering know... I am a tn sufferer too, I'm here to talk.

*Please keep the comments respectful to the community, no cussing or aggressive behavior.

Nov 24, 2019 9:19 PM

I experienced TN many years ago from an infection in my teeth. I’m no stranger to pain but I can tell you I was crazed with pain. Rolling from side to side in bed. Afraid to open my mouth because it might bring on the pain. I feel forvall TN sufferer. With my condition now, my entire left side of my body nerves are affected and can when I have a flair bring on that type of severe pain. Wishing you as pain free as possible day and that you are able to cope with your severe pain. 🤗🙏🦃❤️🦋

Nov 25, 2019 6:14 AM

I must think about ☠️ almost every day Im afraid I would be reborn in some 3rd world patriarchal system.
Where women are thought of inferior as well as a possession.
No music and a black sheet cover my body in 105 F 40.6 C which with my MS would kill me anyway
Have several auto immune diseases beside a crippling back so I lay in bed just hoping the next surgery will be the one that lets me walk again I'm rambling I have great difficultly speaking out loud because of the multiple sclerosis issue. So yah I feel ya understand the not want to go on. But it can alway be worse. sometimes i don't know how but it could alway get worse. At least I can still see. That's a big bonus👍🏼and I do have a really cool motorized wheelchair👩🏼‍🦼 Don't give up

Nov 25, 2019 7:20 AM

Hi I’m also living in pain as well as my Fiancé. They are trying to figure out why I have back pain and leg spasms . I was going through a Rhyitzotomy but it failed on my left side . So we are going to get second opinion from y primary dr dec 5 we are thinking it might be fibromyalgia..
My hips both hurt also .. I’m use walker and a cane it’s a leapard..
I hope that you guys get your answer and I’m send prayers and support . Oh my Frieds boyfriend is in Hospice passing away ... Shrll be my maid of honor Sept 6 2020..
I’m deal with allergies now it ugh 😑.. so hug and gently to you all . I’ll up date you when I can .. LA donna I’ll be prayer for you and everybody here ..🌈🌈🤗❤️morning btw Shore

Dec 08, 2019 6:10 AM

I have crps as my main struggle. Because of the crps, I also have a weakened immune system. I get recurrent shingles outbreaks and they occur on my trigeminal nerves.
With my crps, I'm in constant burning pain in my left leg, and entire upper body, except for my head. I haven't had a pain level below a 4/10 in almost 13 years. CRPS and TN are both nicknamed Suicide Disease. Having both was beyond terrible. But I am very lucky to have a doctor that caught the TN very early and was able to reverse it for me.
I got TN after a single outbreak. After the shingles had cleared up, I still had the lightning bolts shooting down my face. They were so incredibly direct that I could outline the nerve on my face and be as accurate as any neurological test.
I'm not sure if my treatment will help you, but I thought it was worth a shot.
My doctor gave me Lyrica (pregabalin) to take for the TN, and it was cleared up within 2 months.
The Lyrica does nothing to help with my crps, and I've tried it numerous times over the years. But it worked wonders for the TN.
I still get shingles outbreaks a couple times a year, and if I feel that it's pain and not just discomfort, then I start taking the lyrics again to try and break the pain cycle before it gets amped up.
Hopefully my story is helpful to someone?!
I know that it is absolutely brutal to be in pain all the time, but you've got to remember that there is more to you than the pain.

Dec 08, 2019 10:04 PM

I’m sorry that you have suffered so much pain. I’m glad that your doctor was able to help you. I had TN from a sinus infection once. Wow very painful. Didn’t realize how sensitive your face is to pain until I had it. I remember rolling side to side in bed intotal agony. My heart ❤️ goes out to anyone with TN.

Dec 09, 2019 1:34 AM

I had shingles and the pain was unbearable. I don't know if that was TN. This weekend my pain has been unbearable. I'm having more episodes of long term daily pain... chronic that I can't seem to get relief from. I wrapped my legs in heating pads today. I try to push through it... Ashtpiano I hear you when you say there is more to us than the pain. I hear you but days like today and this weekend it's difficult to believe that. Thanks for sharing your story. I always appreciate it when everyone takes the time to post.

Dec 09, 2019 12:52 PM

I developed Trigeminal Neuralgia (TN) following a slip & fall, in 1998, on ceramic tile where the back of my head struck the hard floor twice. It begins in the left Temple and surrounds the outer side of my left eye, then goes down my cheek and into my chin; sometimes it even affects my nose or the whole left side of my face & head. The TN has since progressed into a precursor warning for an incoming migraine headache. The doctor's can't explain why but at least I now have a warning to take migraine meds early (Maxalt). It's no fun by itself but is especially bothersome when involved with a migraine or my TMJ/TMJD of my jaw & teeth.

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