As someone who has struggled with TN for nearly ten years, half the time with my TN flares I haven’t been able to eat or drink, and I’ve ended up hospitalized for it, and pretty much dropped into something similar to an induced coma with medication until the pain cycle broke. These are all great suggestions, unfortunately they don’t work for everyone

To all the people with this ,I also have flare ups and what I have found to relieve my pain is I go for a walk, about a 1/4 mile and pain subsides, this is the worst feeling in the world and feel for all who have this , I'm also against taking meds my whole life like doc has suggested, I'm always looking for some alternative! God bless !

24/7 pain won’t let me work out, eat, sleep etc….

Diagnosed in 2006 with TN. Had CAT/MRI and have been taking gabipintin. It help to calm it but I have flare ups with stress. Lol which is all the time now days. I also have fibromyalgia. I hurt most every day. I have had to learn to live with pain. God bless anyone that has either of these illnesses

❤ thank you for encouragement Dr

Diagnosed 1984 now I'm 56 yo. Today , in pain

Nothing was done for me for over 6 years.. the pain is unbearable.. wake up with pain.. go to bed with bed.. really sad

I have tea in and have had it since the late 1990s. At first the pain would last about a week and then go away for years and it would come back etc. until about four years ago. It has never gone away. I don’t have the pain all the time it just flares up. I don’t take medication for it because I don’t believe in medication but the last neurologist that I saw after he conducted an MRI to ensure that there were no tumors sis etc. he recommended magnesium glycinate and vitamins, B2 and B6. Additionally, he told me to use frankincense oil and massage on the side of my face. It helps somewhat, but there are times that I cannot eat, drink nor talk. I have seen a lot lately on the benefits of castor oil and I am going to give that a try.

It’s nearly impossible to eat, drink or sleep with TN flares. And forget about exercise

I was diagnosed 9 1/2 years ago. It has ruined my quality of life. Been treated with acyclovir and gabapentin. Meds made me sick, lost 50 lbs at one time. It's horrible.

This whole nightmare just started for me about three days ago. Er doc knew immediately what it was. Seeing a neuro and an ENT next. The puzzling thing for me is this horrific sound that I hear with every pain jolt. I will hear it without the pain but when that happens it tells me the shocks are coming next and the sounds get louder as the pain intensity increases. I can't quite put into words what the sound is but think high pitched cricket space laser🤷 I am becoming discouraged as I read the course of this illness. Does anyone else get the weird sounds in the affected sided ear? The er doc looked at me like I had three heads when I was trying to explain the sound I'm heading that nobody else can. It's not tinnitus- not even close. I am extremely embarrassed about the entire body reaction I have to the shock in the right side of my face. I look ridiculous because my entire body reacts and I have accidentally slapped myself as my hand drew near my face in reaction to the pain because the whole thing is just so violent.

My mom has trigeminal neurologia... worst pain ever. Her flare ups are 100% correlated to space weather. (Solar flares / gro magnetic induction), as is my wifes migraines; all immediately mitigated by a shielding room.

TN is a nightmare and a majority of all the physicians I've gone to have barely been able to help much at all. Once they get to the point they've done all they know of, you move on to another and another until it seems like there's no point except to be sure there isn't anything the TN is masking (or the possibility someone will figure a solution that FIRST DOES NO HARM). Cyclically I flow through points of accepting I may be stuck with it for life. Maybe it will eventually leave, maybe it won't, the best we can do is do the best we can with what we have and do not let any physician make you feel bad or like your pain is in your head. If they do, FIND A NEW DOCTOR. The same goes for dentists. They are not all made equal. As many of us know, dental work is pure Hell. Personally I need to be sedated just to get my teeth cleaned. Do not let even one hygienist or dentist make you feel bad for needing accommodations for TN. There are dentists and staff out there familiar with this struggle. You don't have to subject yourself to any unnecessary stress on top of the pain you deal with. Sending positive vibes to everyone who has or is there for someone with TN.

You don't seem to understand sometimes it feels like NOBODY else understands the pain the depression the struggle to feel normal when every thing seems to cause these attacks I was put on tegratol XR and it worked great for about a year then it just failed to help anymore and now I can't eat sleep rub my eyes or temples without electric pain shooting through the right side of my face beginning in my right temple and eye it's utterly unforgiving and sometimes it's hard not to feel defeated!

I will give this a try. Really feeling like I am on the ledge here. The flare ups that I have been getting....I can't even explain the pain level. Last night I passed out from the pain .... kind of a relief. Any extra help would be great 👍

How long do you take the antivirals?

Thanks

What about occipital, trigeminal, auriculotemporal, Supraorbital, and Supratrochlear neuralgia all at once? 🤔

I've had TN since I was 13 years old. I am now 49. MVD done twice (2008, 2010) with second one giving me 13 years of relief. The pain is back. It's scary to think that theses electric shocks can escalate to the needle throbing pain felt behind my right eye. I would give anything for a permanent relief to the so called suicide disease. I sent for an appointment with two surgery centers awaiting who calls me back first. It's not only the pain it is living in fear of pain at anytime, including while I sleep. It makes me wake up at random hours avoiding resting well and tiring me to tolerate more pain. Medications are useless and deprived me of having children destroying my sperm count (Tegretol).

I hurt so bad 😭

I overthinl a lot and once i thought that i had pre trigeminal neuralgia and i was depressed and constantly scared for days no wonder its called the sucide disease

There is now a surgery that has been giving most patients’ their quality of life back.

What’s the point anymore I just keep getting chronic illnesses, there’s so many things I want to do and i haven’t even finished college but I’m stuck here like a rock. I can’t take this. Everything I want to do in life I cannot do normally like billions of others can. So what’s the point of waiting in this life miserably. I understand that other people have it worse than me. I’m grateful for what I have honestly. It’s just that these things happen to me so randomly. I got this because I put ice on my face then some parts on the right side of my face started swelling a little and it hurt to touch them. I have a constant low pain. Which is the easiest type of pain when it comes to TN. I hope it doesn’t develop. the doctors in my country won’t do anything until it’s already gone to a severe stage. Sorry abt this selfish rant.

How long of a course for these antivirals

I got TN from Shingles inside my left eye. It cooked me. Felt like I was being shocked in my Temple. It was all downhill from there. I'm on Oxcarbazipine and it's wicked. I fall, see double etc etc. My Cornea was fried too and believe this or not, my brain sends fluid to my eye. Eyedrops/Gels etc just hurt my situation. Been near 2yrs. My skin under my hairline is burned up or diseased. I got 2 Botox shots but quit because the relief was temporary. I have a bad feeling about recovery. Can't help it. I lost 40lbs fast. Help!¡!!! Btw I believe Covid awakens these dormant viruses. 4 others I know of had Shingles in the eye, I'm the only one who lived. I was close

It feels like nothing can be done especially when doctors gaslight me constantly because I am young looking and have bilateral trigeminal neralgia but half the doctors perport to understand TN as experts who "wrote the Bible" on the topic and know absolutely nothing but others who are humble take is seriously and do their best to help. I am getting worst and my pain is not being helped well. I'm a mother and grandmother and business ower and all the medical gaslight is traumatic and worsening a situation that is already mind-blowing difficult. The pain is insane and no one knows what the hell they're doing when it comes to TN, let alone ALL 3 branches on BOTH sides, dull constant and sudden horrible boughts. I'm 43!!! It's VERY hard to get help with this and I tried to advocate for myself for the past 2 years after diagnosis but it's basically gotten me nowhere! Mild pain relief and I am trying not to freak out because the side-effects of meds are already getting ridiculous and the contrasted MRI with thin slices didn't show anything at the moment. Unless it's related to whiplash from multiple car accidents and in one of the top 2 vertebrae,too. It's definitely NOT TMJ as this was ruled out extensively even though I already knew that's not what it was. Half my teeth are missing on top and bottom of my left side but it took FOREVER for someone, an Oral Surgeon, in my case (thank God!) to diagnosis me correctly. Medical gaslighting is making it harder for me to heal. I need whatever help I can get but it takes MONTHS to get help and those appointments are a joke and just make me want to cry FOREVER!! God help us all who are dealing with TN!!

Is an MRI the only way to tell if someone has it?

Hahaha that don't ever think there's nothing to be done for your pain. When medications stop working is BS. Medications are suppose to work regardless what you think otherwise it's a placebo effect. I'm lucky im pain free due to the operation I had. If you got health insurance I recommend doing the Operation (microdecompression) if it's chronic ( 24/7) pain and it doesn't going though phases.. I had the operation and I'm 2 years pain free. ( I understand the operation isn't for anyone) but if you in that 24/7 pain where it doesn't go though phases and medicstions stop working what other choice do you have?

It is miserable to have- i NOW know why it is called Suicide Syndrome. I would not wish it on a friend- My Worst Enemy perhaps So!😅

I have MS since 1997 but I just started experiencing Tn and it's super painful. It's starting to awake me out of my sleep. My pain is on my right side of face, what is the best side to sleep on?

it's god awful , try cbt cognitive therapy

Says the guy who doesn't have TN