I’ve recently been diagnosed with Bilateral ATN or TN2 with a negative fiesta mri.

Unmedicated so far but just utterly devastated. Only 35 years old.

Is there hope in living a normal life for those who can’t have an MVD?

Will there be better meds in the future?

Need some words of encouragement from people who understand.

Hey, So my physiotherapist who treats my TN, asked if TN can also be caused by a virus like Covid or Influenza?

The NIH says 36% of celiac patients have neurological symptoms! (This is not the case with children) just adults. But if you have celiac in your family even if you don’t have any other typical symptoms maybe see an allergist. I find this hopeful as a potential “cause”. Anyone else with TN also have celiac?

Does this mean that the surgeon may not approve MVD surgery?

I have posted before about how my TN is mainly triggered at night but after using my journal to write down when my symptoms are better/worse it seems to be when I’m sitting or laying for a period of time.. hence the wake up calls at night!

During the day I’m office based so sit down for 2-3 hours at a time and notice after that time my TN2 pain starts creeping in.

Go for a bit of a walk or stand up for a bit it dies down.

I’ve also said on here before my symptoms massively die down if I play football or run.

Obviously in the middle of the night trying to sleep that’s not ideal but I’ve done some reading that this can be linked to the upper cervical spine which would make complete sense.

I’m on carbamazepine just upped from 200mg to 300mg which has next to sorted the TN1 pain I had (other than last night)

Has anyone had success from visiting a chiropractor to ease the symptoms or acupuncture in that area?

My TN is linked to my MS as my MRIs are clear and have pretty typical TN2 pain across the top/bottom of the right side of my jaw and cheek where my TN1 pain would also be but touch wood that’s at bay.

Hello, over the years have only found a few things that have helped me so far apart from the medications. Have found that a hot shower temporarily stops a lot of the pain, heat packs and a hot temperature outside. Has anyone experienced this and found anything else similar?

I wanted to know if anyone has tried a naturopathic doctor and had good results? I have Atypical TN.

Oh, you want me to “just relax”? Sure, let me sit on a cloud made of pain-free air while sipping chamomile tea. 🙄 Relaxing with TN is like trying to juggle flaming knives while riding a unicycle. Keep the well-meaning advice coming, though, I’m collecting them for a future comedy special. 😅

Ive read here about lidocaine nasalspray, ketamine and lidocaine IV drips. What else guys? Please I need to persuade my neurosurgeon that this is not all that we can try.

For those here who have high blood pressure you believe/know to be related to the pain and stress of TN, is it your diastolic (bottom number) very high or is it both numbers?

I spent 6 weeks in a TN flare which exacerbated other illness (which has also meant pain), and when my BP was recently monitored for a week my systolic is elevated but diastolic is sky-high.

For example today: 133/129, but then dropped to 124/99 after an evening lying on the sofa.

I have a phone appointment tomorrow to hopefully get on meds depending on blood test results, but I'm just wondering if I'm not alone!

I take carbamazepine, could it be from that? Non-smoker, no lifestyle changes.

Last week-long BP monitor was 18 months ago, and was all absolutely fine. It could have come on gradually, but it feels like my health went off a cliff specifically with the flare.

Thanks.

I'm having my MVD tomorrow (well, technically today I guess - it's 1:30am here) and I can't sleep. Please share any positive experiences/stories that will help me feel less terrified! Or any random/funny stories to distract me. Thank you ❤️

I know everyone is different, but just wanted to see what helped people more Carbamazepine or gabapentin?

Hello all! I'm in the dark here and looking for some help.

Long story, even longer: Starting in November, I had a big flare up. I had no idea what it was, and being a 40 something year old man, I just attempted to ignore it or "sleep it off". That worked for a time, but the flare ups just started to increase. I have pain in my Maxillary branch. I haven't determined a trigger, as it was very mild during the day and would get worse as the evening progressed. Finally, I went to see a doctor who diagnosed me with TN. They prescribed me carbamazepine, 100mg twice per day, along with ordering an MRI. I will say that the medication immediately controlled my issues.

My MRI results came back the same day. They sent them to me directly, with no context. I have tried contacting my doctor and staff for a review of these results but have not been able to reach any of them (left messages). Today I received a call from my DR's RN, who told me that the dr would review the results with me in person at my next appointment, which is in 2 months. I should mention that I recently moved and this was the first time visiting this DR, so we do not have a history. However, I am unsatisfied.

Through the power of google, I have picked apart the MRI findings and am now only MORE concerned. I'm currently searching for a neurologist in my area who can see me sooner than my general practitioner, as I assume that will be the recommendation.

That all said, I'm still wondering about these MRI results. I know that medical advice on Reddit is not the best option, but I'm wondering if any of you may have some insight as to what these findings may mean:

IMPRESSION:

T2/FLAIR signal abnormality within the lateral tegmentum. The expected location of the left
trigeminal nucleus. Findings may represent remote vascular insult. No associated contrast
enhancement.

Narrative

EXAM DESCRIPTION: MRI BRAIN W W/O CONTRAST
ACCESSION: 4476647
CLINICAL HISTORY: Sensory abnormality, trigeminal origin (CN 5)
evaluation for trigeminal neuralgia
COMPARISON: None

TECHNIQUE:
Multiplanar multisequence images were obtained through the brain with and without contrast.
CONTRAST DOSE: 10 mL of IV GADAVIST

FINDINGS:

Within the left lateral tegmentum in the expected region of the trigeminal nucleus there is
T2/FLAIR hyperintensity (series 9 images 65 through 70). No associated contrast enhancement,
diffusion restriction, or hemorrhage.

No acute intracranial hemorrhage.
No midline shift.
The ventricles are normal.
The cisterns are patent.

No pathologic contrast enhancement.

The orbits are unremarkable.
Mastoids are clear.
Multiple bilateral maxillary sinus mucus retention cysts.
7 x 3 mm T1 and T2 hyperintense nonenhancing lesion on the surface of the right posterior
parietal calvarium, likely represents benign intraosseous hemangioma.

I’m on carbamepazine. Until now I’d have “attacks” lasting 2-9 hours of relentless (constant) pain then I’d recover and gradually improve for a week or 2. This time I’m on day 8, of everyday pain. It comes and goes all day but it’s ALWAYS there in the morning first thing. It isn’t improving. It’s actually gotten a bit worse the past 2 days. It’s at a solid 6-7 out of 10, worse at times. I’m now waking up hourly every night with pain.

What can I do? I need relief. I need to stop this flare, I’ve never had one be so relentless.

Also does this sound like classic TN2? Is this just my new normal? It happened so suddenly.

Hey, anyone that had a mvd and it took longer than 3 months to heal from the TN? I’m losing hope and I don’t want to 😞 I hate this so much. Please tell me there is still hope where I won’t need another procedure.

Anyone else ended up with dark brown patches on their face? Apparently it should have faded, but I have been off medication for about a year now and it’s still pretty noticeable. Definitely not the worst side effect, just another thing TN has done to me.

I had a cosmetic procedure around my eye. Once that wa healed I could not wear contacts, the irritated my eyes especially the right one, 5 months later my eyeglasses started hurting my face I have been getting dull aching pain on my right side, sometimes lasts all day. I do get it on my left, but I think it's from the irritation from the eyeglasses. My scalp, forehead on both sides are sensitive to touch. I will get burning sensation down my right side of face and neck especially at night. My neck and shoulders hurt and are sensitive to touch. I have not gotten the stabbing pains. I can feel the ache in my teeth. I saw the doctor on Jan. 24th. They did an MRI which came back fine. He started me on 400 mg of carbamazepine. He said if it works then you have it. Tomorrow will be a week, so far I believe it's helped a little.

I would like to know some distraction methods. What helps you. Coz all I get it just busy yourself or distract.

I've been having headaches for 6months now and moslty numb feeling on my scalp (usually back of right side of my head, and sometimes comes to left side). Not too strong always, not constant - but daily. They differ from sharp pain from back of my head to the front, usually forehead, then on pain on temple, then both, sometimes for a few seconds, sometimes longer...from time to time I also feel pain when I touch any part of right side of my head. Also I'm very tense in that side of my neck. Normal MRI was clean, RTG of neck showed small scoliosis and narrowed space between the vertebrae, carotid Doppler ultrasound was clean. One doctor said TN, other ON, third neck issues... I'm really starting to feel bad about all of it and not knowing what the hell is happening. Lately it's mostly the numbness, and it's starting to really scare me it might be something lige threatening...so any idea, advice, words of encouragement would be great!

The meds for this condition are brutal it seems. Double edged sword for sure. Is anyone just suffering through the pain.

I had gone about 2 months without any of the "zaps" I had been getting in 1 specific tooth. I had the tooth looked at by an endodontist and he said it's fine and that it's neuralgia. The pain went away until literally an hour ago, and now I've had 5 good jolts. Is there a medication I could take to calm the pain only during flare-ups to hopefully calm the next attack? Or is all of the treatment much longer? My doctor had prescribed me carbamazepine a month ago but have been scared to start them, but took one out of desperation tonight.

I've had tn type 1 for 11 years now. I've been able to deal with it, medication free for most of that time. This recent flare up started a few weeks ago with occasional shocks like any other flare up but almost a week ago it got bad. I was getting attacks that lasted 1-2 hours. Longest one being almost 3 hours of nonstop shocks. I've never had attacks like that. They normally last 2-5 minutes and though I would get multiple attacks in one day, I could handle it. I cannot handle these. I had my doctor put me back on carbamazepine which I absolutely hate the side effects. I'm about 4 or 5 days in. Yesterday was practically pain free besides when I was eating. Today I'm getting all kinds of shocks again when talking and eating and drinking is unbearable again but if I keep my mouth shut and don't eat or drink, I'm not in pain.

I know it gets worse the longer you have it. I just wasn't expecting attacks to last this long. I assume they are just back to back attacks? I have an appointment with my doctor on Monday and I'm going to have her get me a referral to my neurologist so I can talk to him about possible procedures because I just want to be done.

I hate this condition. Loathe it.

Any insights are welcome. I am hopeful for an MVD, however, every time I approach my neurosurgeon they’re skeptical because I am atypical and have jaw issues and always tell me that it’s jaw related. I can feel the pulsing of the artery almost regularly and I also have HFS. I just want to be considered a candidate for surgery, for once.

What causes TN when you develop TN as a result of the veins/arteries rubbing up against the trigeminal nerve and removing the myelin sheath?

obviously the vessels weren't always there if you developed it later in life (right?)

do they just grow and develop later? (is that a thing?)

what causes it to happen?

I've been diagnosed with TN since june 2020 and had 3 MVDs 1 gamma knife and realized no one has actually explained to me how it actually happens.

someone told me that their relative got dx with TN and their doctor told them it was caused by stress. I think TN might by exasterbated by it but I have a hard time believing it's caused by it.

I had read that capsaicin immediately stops facial pain. I just wanna let you all know that it's true! I'm currently on 800mg of Carbamazepine per day but it doesn't completely eliminate the pain so out of desperation I bought CapzasinHP (this is the correct spelling btw) . It's a cream with 0.1%!capsaicin and it immediately stopped my pain . I'm over the moon about this! It burns a little on the skin but nothing like the breakthrough pain I had. I would recommend that you don't place it any higher than your cheek bone, straight across from the bottom of your nose. Earlier I went a little higher with the cream and got some a little too close to my eye! It really burns there! So be very careful if you decide to try it.

Hi everyone, I’m not sure if what I’m experiencing is TN so I wanted to get some opinions. My symptoms (severe jaw/temple/neck pain and headache) only seem to happen if I’m in the wind or cold. Is it possible for it to be TN if it doesn’t happen at any other time?

I've been living with trigeminal neuralgia (TN) for nearly five years without any pain management. Recently, I was prescribed 200mg of Carbamazepine. After some intense flare-ups, I was forced to go to the ER. Honestly, I’ve always tried my hardest to avoid doctors. But after researching the short-term and long-term side effects of the medication, I’m starting to question whether it’s worth the potential harm to my body. It’s unfortunate, because I truly don’t want to lose my quality of life.

Though the pain is excruciating, I know that it eventually subsides. I tend to experience remissions that last for months, with flare-ups occurring once or twice a day, lasting anywhere from 15 minutes to an hour and a half. Nothing helps the pain, and it’s just a matter of bracing myself until it passes. I understand that for some, this might not be the case, and I know as time goes on and I age, the pain may become more frequent. I honestly can’t imagine it getting any worse than it already is, because during flare-ups, the pain is debilitating.

That being said, I want to know what would happen if I decide to stop taking the medication after the prescribed month. I realize it hasn't been long, so flare-ups are likely to occur. Outside of that, is there anything I should be concerned about? Also, I’ve noticed that the medication made me feel very off at first, though I think my body has adjusted. As I mentioned earlier, I’m just not sure if the benefits outweigh the risks, especially considering the potential long-term harm the medication might cause.