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
@DrewTimmermansND3 жыл бұрын
I'm terribly sorry to hear yours has been that bad. And I'm well aware that generalized recommendations don't work for everyone! I never claimed they did 😊. Just trying to help some people. Individualized recommendations are handled through patient appointments.
@yasinv3743 Жыл бұрын
How you are dealing now ?
@jorgerivera836111 ай бұрын
@@DrewTimmermansND hello. Check out our comments under my name. Hopefully there is something there that can help you. Wish you a pain-free life.
@crazykitten4405 ай бұрын
Don't know about you Jenna, but as for me Comme ci,comme ca,, as the French say!
@davidromero998515 күн бұрын
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 !
@highparadise11 Жыл бұрын
24/7 pain won’t let me work out, eat, sleep etc….
@DrewTimmermansND Жыл бұрын
I'm terribly sorry to hear that. If you would like to see about working together with us, you can find more information here - regenerativeperformance.com/contact
@hypothetical30011 ай бұрын
Me too. And did all those treatments mentioned.:(
@prussiaboi7077 ай бұрын
Meditate its underrated
@Pattim476210 ай бұрын
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
@crazykitten4405 ай бұрын
Have them Both Amen ---Amen!
@kathleenbellair94453 ай бұрын
I have both TN and fibromyalgia also. I was lucky enough to have a successful MVD procedure yrs ago. For residual pain I am on gabapentin also. For daily aches I take advil. How about you?
@Arctic-fox717Ай бұрын
@@kathleenbellair9445 for neuropathic pain Ibuprofen helps you?!!
@Arctic-fox717Ай бұрын
❤ thank you for encouragement Dr
@DrewTimmermansNDАй бұрын
You are so welcome
@user-hh7si4em7s9 күн бұрын
Diagnosed 1984 now I'm 56 yo. Today , in pain
@DrewTimmermansND8 күн бұрын
I'm terribly sorry to hear you are still suffering. That's a long time
@angelsandocean2853 Жыл бұрын
Nothing was done for me for over 6 years.. the pain is unbearable.. wake up with pain.. go to bed with bed.. really sad
@DrewTimmermansND Жыл бұрын
I'm terribly sorry to hear that
@booknerdmomma0950 Жыл бұрын
Go to a neurologist and find one who understands TN. I spent over a year trying to figure out what I had and finally my primary said she thought I had TN which she understands bc her mom has it. Mine wasn't textbook as I don't always have the electric shocks but more so the constant burning, aching numbness. I also have some facial spasms forming as well. My Dr refused to do any further mri's since the two I had (for neck and spine) didn't show a compression on the brainstem. I tried to beg for a first mri or mra (I've heard these show the compression) but it didn't happen. My only course of treatment for years of pain was meds. Most didn't work but I found one called amitriptyline that does a little. I also use cdb delta 8 gummies. My Dr wants to take me off the meds bc he thinks TN can magically be healed but from all my research it shows its progressive with no cure. I'm 43.. I have no idea what my life will look like at 83. Even with meds my quality of life had diminished but I push through bc I have no choice
@robertwood9984 Жыл бұрын
@@booknerdmomma0950Don't give up! Keep looking! Keep asking! Keep knocking! Keep studying! Keep learning! Dont give up!
@RRS789995 ай бұрын
I'm 43, too, and I can't even believe how crazy this pain is and how NO ONE gets it unless they're dealing with it themselves. I'm SO sorry that you're dealing with this at such a young age, too!! 😫😭🫂
@Arctic-fox717Ай бұрын
@@booknerdmomma0950I'm in similar boat - after I wake up - within an hour my pain starts - I have been diagnosed with atypical trigeminal neuralgia - neuropathic pain - I am using buprenorphine which was just recently been recommended by VA as pain regimen instead of regular opioids: which never truly helped me anyhow. I am surprised as I have been mostly OK for 12 months - last summer in June I had all four branches middle and lower hurting on both sides. Trileptal also helps but have to take Nexium for stomach acid it produces. Try finding as small of an object as possible and massage the muscles in the area. That helped me a lot in the past - this time it is just nerve burning like many scorpions bitting onto the nerve continuously releasing the venom and producing pain. It is difficult to relax in the evening. Diazepam has been helpful as well. I am surprised by neurologists not knowing that since it is epilepsy drug - it reduces nerve impulses; release muscle spasms that might be secondary to nerve pain .. difficult to brake out I am considering gamma knife surgery.
@irenelopez3390 Жыл бұрын
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.
@irenelopez339011 ай бұрын
I watched a video on KZfaq regarding DTR therapy. In addition to TN I have TMJ. In the video, it talks about the combination of the two and a dentist who specializes in DTR can help with the afflictions. Thought I would pass this on to y’all and you can do your own research. Hopefully this helps out someone. I am definitely going to give it a try because I don’t want all the side effects of medication’s and dangerous surgical procedures. God bless everyone.
@heaven_bound_94xo8 ай бұрын
"I don't believe in medication.."....hurrrrrrrr duuurrrrrrrr.
@JennaMonsoon82 ай бұрын
It’s nearly impossible to eat, drink or sleep with TN flares. And forget about exercise
@DrewTimmermansND2 ай бұрын
I'm terribly sorry to hear you are going through that
@wrewgawrew526111 ай бұрын
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.
@the_phuckery_is_real72528 ай бұрын
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.
@RRS789995 ай бұрын
I haven't had a sound with my painful electrical sudden shocks and even if doctors don't believe you they don't know everything,or everything about your medical history,or everything about your body, or everything about TN, or everything about the brain, etc., so just validate yourself and empathize with yourself and do your very best to care for yourself. 🫂
@SacredOwl8 ай бұрын
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.
@candraorvis83048 ай бұрын
A shielding room?
@NikeDude133 ай бұрын
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.
@jtmckay21165 ай бұрын
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!
@rob600 Жыл бұрын
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 👍
@AleahBBRudd6 ай бұрын
I have a stabbing pain in my eye that goes down my nostril and into my teeth! I feel like I want all my teeth ripped out! I went and got Ketamine Therapy for suicidal thoughts and a few weeks later noticed that the ketamine had significantly reduced my pain levels.
@itsjudystube4 ай бұрын
@@AleahBBRuddI have only just started with the pain. My front tooth and right nostril are the main culprits. If I rub my top gums it seems to help. I can’t believe the pain. Excruciating. I have been referred to hospital for investigations.
@cindyjuan13493 ай бұрын
How long do you take the antivirals?
@satchycollins398511 ай бұрын
Thanks
@justinb21846 ай бұрын
What about occipital, trigeminal, auriculotemporal, Supraorbital, and Supratrochlear neuralgia all at once? 🤔
@RRS789995 ай бұрын
😳🤯😫😭 I'm SO SORRY!!
@justinb21845 ай бұрын
@@RRS78999Thank you so much... It's insane right now 🤪 what's going on all over... It's been going on for over 4 years straight now, not just all the shady stuff, however the pain I've been experiencing in my head 🤕 ... I finally got into see a upper cervical care chiropractor... He's doing his best to get me aligned and straightend out.. I was assaulted in my bedroom in 2020 by two people.. The Police and prosecutor didn't prosecute the crime, an I caught it on video... My whole perception of what the police do and the prosecutors... Completely warped and turned upside down... I have been unable to work an have been disabled ♿ from being injured from the assault. I've been doing my best to figure out a way to hold the prosecutor and police accountable for willful negligence along with the wrong-doers who attacked me, they obviously need some kind of rehabilitation or help.. This shouldn't happen to anyone.
@jorgerivera836111 ай бұрын
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).
@TheLarinator11 ай бұрын
I've been pain-free for over 2 years with no meds. I know this has worked for others, but I'm not naive enough to say it will work for everyone. My MVD saved my life. I was in such pain that suicide wasn't out of the question. After an MVD I was pain-free and drug-free for 12 years. In those 12 years, I kept an interest in TN to learn more about it to help others. When the pain started back I knew what to do. I tried some supplements and settled on taurine, lion's mane, and a B complex, and have been 100% pain-free. I am restoring the myelin sheath (insulation)around the nerve instead of treating the pain with drugs. I learned more in this area from those successfully treating themselves with MS than from any other source. Google taurine and myelination, and lion's mane and myelination. If you doubt that demyelination has anything to do with TN, google it. I've been pain-free for over 2 years now and I have had good feedback from others who have tried it. There are other supplements that help in this area, but when I found what worked for me I stayed with it.
@jorgerivera836111 ай бұрын
@@TheLarinator Thank you. To fix what's wrong or missing is definitely better than masking the symptoms with pharmacy drugs. I will google those and go looking for the capsule supplements. Wishing you a pain-free life!
@TheLarinator11 ай бұрын
Same to you.
@CoachDodderidge9 ай бұрын
@TheLarinator how much should we take to remyelate?
@TheLarinator9 ай бұрын
@@CoachDodderidge I didn't mention brand names because I don't want to make it sound like I'm trying to sell something, but for taurine, I use Nutricost, Lion's Mane, Realmushrooms, and Super B-complex, Nature Made. I just bought brands that have good reviews from Amazon. I use the dosage recommended on the bottles. All of this has worked really well, most see results in 2 weeks, and a few have taken 2 months. Since August I have been experimenting with sublingual supplements for a couple of different reasons, I feel this might be a better way to go. With the sublingual lion's mane, there is so much in it that I'm experimenting with taking half a dose. I hold the sublingual under my tongue for 15-30 seconds before swallowing. The taurine I'm still taking in pill form.
@kimcourcelle08 ай бұрын
I hurt so bad 😭
@prussiaboi7077 ай бұрын
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
@SarahLabbett3 ай бұрын
Did you have it?
@prussiaboi7073 ай бұрын
@@SarahLabbett no
@prussiaboi7073 ай бұрын
@@SarahLabbett i was just overthinking
@BlackMilkSleep4 ай бұрын
There is now a surgery that has been giving most patients’ their quality of life back.
@YJ-73 ай бұрын
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.
@kristinas5714 Жыл бұрын
How long of a course for these antivirals
@SeemsFutileNow Жыл бұрын
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
@RRS789995 ай бұрын
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!!
@cindyjuan13492 күн бұрын
Go to an upper cervical chiropractor
@AleahBBRudd6 ай бұрын
Is an MRI the only way to tell if someone has it?
@RRS789995 ай бұрын
Nope, my oral surgeon diagnosed me. MRIs are supposed to show the trigeminal nerve touching an artery or nerve that may be causing the problem but it seems it rarely shows up and lots of people wait years to try again or get so medically gaslit that they give up on themselves. It's a real crap show and shame. This issue should be much more understood by the world, but especially by those in the medical and dental professions.
@TheAazah Жыл бұрын
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?
@EnggMak Жыл бұрын
Did you have any dental history that resulted in TN ? And how many days it takes to fully recover after surgery?
@BlasianGoddessTM777 ай бұрын
Medication tend to band aid the symptoms but really don’t heal the root cause of it.
@crazykitten4405 ай бұрын
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!😅
@ingridleach8882 Жыл бұрын
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?
@jorgerivera836111 ай бұрын
I'm sorry to hear that. I have the pain on my right side too. The best thing I could find is slightly tilting your head to the left and positioning your pillow to not let your head move from the left side at all. I know that where you have the pain is the area that you should touch the less as TN has that trigger effect by touching or pressing on that right side. I suggest you go to a neurosurgeon and ask for a microvascular decompression (MVD) to get rid of your pain.
@DFTBAandDS9 ай бұрын
I have MS and now TN. I'm wondering if I could talk with you about having both of these?
@sunshinsushi8 ай бұрын
I have Ms and tn too😢
@ashleyhall58562 күн бұрын
I have seen numerous people online who have reversed their MS by eating only meat and fat. It's amazing. Since the fat helps repair the myelin sheath I am curious as to whether it can also reverse TN. (Granted, nerve repair can take up to 2 years, but still, it seems promising.)