r/TrigeminalNeuralgia

Hey, so my neurologist fired me today due to "not being up to date on trigeminal neuralgia research" she told me that pain management is supposed to treat me. My pain management referred me to her because they can't treat trigeminal neuralgia. She was only ever interested in treating my migraine until i was a medicaid member who needed botox (which i used to get and worked). She suggested neurosurgery (not a candidate) for spinal chord stimulators in my cheeks (bilateral) that a neurosurgeon had suggested if and only if i was able to determine that my pain is unilateral.

She refused to help me with at home SPG blocks or even recommending them in a letter for the ER.

Has this ever happened to anyone? What do you do?

Hello

I was recently diagnosed with TN. Over the summer my episodes went from sporadic "shocks" to prolonged ones triggered by speaking, eating, or sometimes nothing at all. My doctor prescribed carbamazepine, 100mg x2 daily. This didn't seem to do anything. After a week of adjustments, we found that 600 mg daily worked to alleviate most of my pain.

My doctor let it up to me to decide if I wanted to do 200 3x, or 300 2x. Does anyone have any recommendations for which schedule is best?

Currently I'm doing 200 3x, but I notice in the morning my pain is more frequently triggered. I'm guessing because this is the longest gap between doses (10 pm, 7 am). I typically take the third does at 4 pm (just so I don't have to take the pills to work).

Thanks!

my Down syndrome sister is 51. we have been battling this monster for 4 years now. started with what seemed like a tooth. went to dentist and he said nothing was wrong. I had a perfectly good tooth pulled because she kept telling me it was her tooth. it wasn’t! off to TMJ specialist and root canal specialist, lidocaine shots etc. now finally seem to be tn. primary doc prescribed her carbamezapine 200 mg twice a day. just started it yesterday. we have tried flexerall, robaxin, gabipitten. nothing has worked. I have had soft tissue ct”s done. now we have mri scheduled in two weeks. will see neurologist soon. it has taken us 4 years to get to the bottom of this. I had no clue what tn was. it started infrequently and we are now up to attacks every 2-5 minutes and they don’t stop coming. She prefers heat but her communication skills r limited. She is in constant severe pain. Any suggestions?

I asked this question a few years ago and it resulted in some positivity on the sub. This is probably the only place on earth where you won’t have to explain what you’re going through and how hard it can be to get through the day. So please share with us your incredible accomplishment, it could be; washing your hair, brushing your teeth, getting your kids ready for school, surviving MVD, finishing your studies etc etc.

I’ll start; I completed half (45k words) of my first draft for the novel I am writing.

Hi friends. Hope all of you are doing well, subjective as that sentiment may be.

I just received the date for my right side MVD surgery. It's going to be at the end of September. Gives me some time to do the pre-ops, take a trip to see family, etc.

I have bilateral pain that is both TN1 and TN2. The TN2 is more present, partly because I always feel it. The typical TN, the pops of pain, happen on both sides. I made the decision last week to do the right side first because it had been much more painful recently. Of course, a day later the left side was like "Oh, what now?" So both sides are battling it out, but I'm sticking with right.

I had an MRI that showed compression on both sides. The report said left side had more, but a neurologist said right side looked more. The neurosurgeon, thankfully a very well-respected surgeon for TN who is in SoCal, said basically it's hard to tell until he's in there. But, good that both sides showed something.

I've been told it's a 50% chance of 50% pain reduction. To start with the latter, 50% reduction in my pain would be a life changer. I tear up just thinking about that. 30% would be great!

As for 50% chance of success, if there was a slot machine with those odds I would never stop playing it. As the neuro said to me (seeing me during an excruciating flare), "You have to take those odds."

Any stories of success, especially for TN2, would be greatly appreciated. Some have shared before when I was looking into surgery, and they meant the world to me. Any advice is also appreciated.

We live about 2 hours from the hospital, so we plan to stay close for a while. In fact, the doctor requires it.

This community is more beautiful than I could ever have imagined or could now ever express. Prayers to all of you for joy and a life that is much more about love than about this awful disease.

Thanks

Hello everyone.

I disappeared from this sub for a while due to mental-health issues and tbh, to see these posts every time I open reddit made things worse for me so I needed a break. But now I have to vent a little bit about my situation, and I know you guys will understand it best.

Yesterday, I had a root tip surgery. A surgeon I went to without any hope for anything surprisingly found a chronic inflammation exactly in the spot of my TN pain. I had to wait 2 months for the appointment and couldn't help to be hopeful although I knew it will crush me if it's just a coincidende that the inflammation is there and the treatment does nothing for my TN pain.

And yesterday was absolute hell. The operation took an hour because I needed breaks and I was in so much pain afterwards. And when the anesthetic dissapeared, the TN-pain came back so much stronger. It's so bad. I have the pain from the surgery, and the TN pain, and on top I now have issues with a numb chin because the anestethic didn't go away completely. I'm trying not to panic but I'm so scared of another nerve issue.

But well. My biggest problem is (of course) TN. The numbness and the surgery pain are nothing against it, although they make the situation worse (I always hate it when I have pain on top of the TN pain, it's too much for me). Before the surgery, I also had pain everyday, but it was moderate. I could live with it, and even forget about it with enough distraction. But now I struggle to drink and eat again because it's SO painful, and it's because of the TN pain and not the surgery pain.

It's so discouraging. My pain is even worse than before, I have new pain (although only for a limited time) and numbness on top... I know, these first days will pass, and the surgery pain and HOPEFULLY the numbness will go away. But it didn't do anything to my TN pain, and I tried to expect this, I tried not to get my hopes up, but I couldn't help it and now I'm so crushed tbh. I cried a lot in the morning. Which made it even worse.

Just needed to vent. Hope you all are doing okay.

Hi guys, I just had a massage while on vacation. I’ve been on the medication for a week and half so I know I’m still getting use to the meds. But I just had a massage and I had one shock but very uncomfortable tingling on my tongue and teeth. Has anyone had this experience? My nerves is calming down though. Just slowly

Hello,

I have some sort of trigeminal neuralgia+ sphenopalatine neuralgia everything atypical since my pain is constant but the pain can increase during the day to the point i cry.

Ive been reading a lot of the symptoms here and my symptoms are a bit different.

My pain is triggered by breathing, when i breathe i feel a cold pain through my left nostril and my nostril gets physically cold if i touch it. If the air is cold then im dead, i can not tolerate cold air, cause my normal pain which is a 7/8 goes straight to 10. Anyway this cold pain feeling goes through my left side of the throat and ends in my left ear. Since my pain is constant and triggered by breathing i wear a patch on my nose and depending on how i feel during the day i migh add a mask (like covid times) or even a electrical mask that provides heat and then my peaks of pain lower a little. This has not only affected the left side of my face but also my throat, since i have redness and my voice is affected as well. (They have ruled out everything else that migh affect my throat)

Im on oxcabazerpine 600mg a day for 6 weeks and then they increased it to 1200mg a day and amytriptiline 25mg each night. Ive been taking this high dose for almost 6 weeks, i can tell the peaks of my pain are a bit more controlled, since before i used to have maybe 6 peaks of high pain that would made me cry, and now i migh have 1. But im still not able to remove the patch on my nose cause the direct contact with normal air triggers my pain.

Anyway just wanted to know if anyone has this type of neuralgia? And what are you taking?

Hi everyone. My friend has been suffering with TN in her mouth for about 10 years. She has been on every kind of medication, Botox, other injections, a mouth, rinse, pain medication, etc. Because the pain is closest to one of her front teeth, she even had the tooth pulled, and a implant put in, but that didn’t help. I can see how much it wears her down and I really wish I could do something to help. She has not been on Reddit so I told her I would canvas this group and see if anybody had any suggestions. Thanks in advance!

I am one year post op (mvd surgery) and i was wondering vaping will have any affect on the results of my surgery?

About 3 years ago I was run over by a car, broke my tibia in one line and fibula twice (looked like a lil triangle ^-^). They put a metal rod through my leg to help recover. I get migrains and sever headaches regular enough to have botox injections ever 3 months (they started doing it in my face for TN and it works sometimes). Finally, a week ago I rolled my ankle and broke my foot...

My realisation has been: TN hurts SO much more than any of that. It's not even close.

The shock may have helped, but when I broke my foot, the doc asked on a scale from 1 - 10 how bad was it? My best comparison was TN. It's easily the worst pain, if it was a 10, breaking bone is like a 3.

I'm relatively new to TN - only diagnosed about 2 months ago. For the past 6 weeks I've been dealing with what is likely a pinched nerve in my neck on the opposite side as my TN. I just had an MRI this morning on my neck/spine to see if there are any pinched nerves but my appointment for the results isn't for 2 weeks.

Is it just a coincidence that I'm having 2 separate nerve issues? Or is there some sort of illness that involves multiple nerves in multiple places? The brain MRI didn't show any compression or signs of MS. I hear of people being misdiagnosed all the time so maybe there is something going on more than just the TN.

About four years ago now I had a dental implant placed that resulted in a nerve injury in my lower jaw. The implant was removed and the chronic pain persisted. A year later I had nerve decompression surgery which did not help, and maybe even made it slightly worse.

I’ve since been spinning in circles without any real treatment success. Daily gabapentin reduces the pain a little bit but causes so much drowsiness it interferes with my job. Cymbalta gave me horrible headaches. Lyrica made me feel on edge with no pain relief. The only thing that helped a little bit without terrible side effects was Wellbutrin strangely enough.

This has really impacted my quality of life. I’m seeing a facial pain specialist who tells me I can try another medication called Amitriptyline and to also research an experimental treatment called Pulsed Radiofrequency that is not wildly available but is showing some success for facial pain (and is also super expensive).

Has anyone in a similar situation had success treating their pain?

Once in a while I have moments where I re-realize and remember what’s really going on with me and it hits me like a truck. I was organizing all of my pills for the week and was just staring at my handful of carbamazepine ready to distribute into different pill boxes and looked at my pill organizer, and thought, “I can’t believe this is my life now”. I never expected to be the type of person who needed to take so many meds just to be able to function. Now I’m thinking about it and I just can never fully digest it. I cried and cried about how I will never truly have answers or an escape. Most conditions can be cured or reversed through lifestyle changes or temporary medication. But me? I’m just stuck, and there’s no end in sight.

Let’s just say I’m looking forward to therapy in a couple of days.

:(

I can feel the faintest hints of pain in my teeth - and yesterday my lower teeth felt like they couldn't bite - like they were too weak

i'm worried i'm going to make it worse just by how scared i am of it coming back - i've had four good weeks, i know it can't last forever, it never does

i'm hoping it's nothing and it'll go away again - the fear is horrible

My mom was diagnosed with TN. She’s been dealing with pain since February of this year. Thought it was tooth pain so they did root canal. It wasn’t. Finally I took her to a clinic for uninsured people and the neurosurgeon did the scan and came back that she had TN. She’s been on carbamazepine, it worked great for the first 2 weeks but now the pains are back and they are worse. Trying to take her back again Monday to see if the doctor can see her but since it’s a free clinic is really a 50/50 chance they can see her.

Last time she went in the neurosurgeon told her she was most likely going to need surgery since the medicine wasn’t working.

Her whole life has been flipped upside down. She’s severely depressed. She can’t eat, she can’t talk, she can’t enjoy life. Yesterday she was got into a car accident and I think it had to do with her severe malnutrition due to the pain and her being in pain. She broke her nose, so that added to her nerve pain is just defeating.

I’m trying to motivate her as much as I can. I can’t imagine what she must be going through. I feel defeated and hopeless. I don’t know how to get her to keep fighting. I try to cook and do things with her and for her but I know that nothing can take the pain away right now.

Is there anything that helped you guys out even for a second??? Anything that can bring light back into her day. Any home remedies that relieved the pain for a couple of seconds?? Is there anything I can do???

Question: During periods of remission, does that mean our nerves aren't being compressed?