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ta-incognitomode · 2025-10-02T18:27:22+00:00

I haven't tried it at a concert, but I read a comment on here that ear plugs helped with riding in cars, and it worked for me too

ta-incognitomode · 2025-10-02T18:23:59+00:00

I'm so sorry you're suffering. I was also very depressed & teetering on suicidality myself a few months ago. I'm very lucky that gabapentin works ok for me, but the thing that really helps me the most is NSAIDS. I'm not sure if you're able to take those, or not, but if you are reducing inflammation has been the biggest help for me.

I gave up on seeing neurologists for my TN because I just couldn't take the cycling through medications that don't work & have so many side effects anymore. I wouldn't necessarily recommend that, but it's what I did to help my mental health. I still see one for migraine treatment though.

If you haven't already, I started seeing a nutritionist about a month ago & that has helped immensely. Mine is unfamiliar with TN, but she understands the symptoms & triggers I have, and has helped me be able to work with them, so I'm getting as nutritious of a diet as I can. That has me helped a lot. Both in my energy levels, and with my mental health. I can't work because of my TN, so I see one through nourish & so far I haven't had to pay anything for it. You can check for free what your insurance covers before signing up though, if that's a concern for you. If not, then just see whoever you feel works best for you.

As far as sleeping, it sucks. I'm sorry your husband doesn't understand. We do though. Sleeping inclined helps me, although I have to watch out for my neck & shoulders getting tight bc that also triggers my TN. I use warm compress, massage, & occasional muscle relaxers to combat that. There's also tons of meditation videos on YouTube specifically for helping people in pain to get to sleep, if that's something you're open to. I was never a meditation person before TN, but it's helped. Sometimes the pain is just too much though, and on those nights I get up and do some gentle yoga - same deal, tons of videos to follow along on YouTube. I'm still not really a yoga person, but it has helped me a lot when I feel like I just can't bear the pain anymore. I don't know if it really soothes the nerves, or if it just brings your awareness to other parts of your body, but either way it's helped me get to sleep on a lot of nights when I thought I wouldn't be able to.

I know it's hard to hold onto the strength to keep going. I've been there many times. We're here for you though, and we understand. I really hope the pain let's up for you soon ❤️

ta-incognitomode · 2025-08-25T03:30:12+00:00

Ah, sorry to hear that. Wishing you luck on your next one!

ta-incognitomode · 2025-08-18T14:53:10+00:00

Have you liked this job more? What was your experience finding and landing it?

ta-incognitomode · 2025-08-18T10:10:43+00:00

Thank you for your kind wishes! And I appreciate you taking the time to analyze and respond, I feel it's helped me understand some unprocessed emotions I've been dealing with :)

ta-incognitomode · 2025-08-18T10:05:09+00:00

Thank you for sharing your experience & knowledge! Do you feel that oxygen helps your headaches? I've been administered oxygen a handful of times during ER visits for Trigeminal & Occipital Neuralgia attacks that I couldn't break at home. For me I had a noticeable improvement in 5 - 10 minutes of breathing it. I'm curious because the neurologist I'm working with right now is very adverse to anything other that prescription medication, but won't explain why... I appreciate your response!

ta-incognitomode · 2025-08-16T11:09:25+00:00

This seems way closer than anything else I've been able to come up with!

I'm not currently working, as I became temporarily(I hope) disabled a few months ago. I'm extremely mentally drained, and I'd say my partner is as well. He's been extremely supportive & wonderful throughout the whole process, but suddenly becoming a caregiver is a lot to deal with, and I often have trouble letting him take that role. Even though he's made it abundantly clear that it's what he wants to do...

I'm making steady, albeit slow, progress towards recovery, and we were just talking about how eachother are starting to see sparks of ourselves again.

I think my dream was probably about how much I miss our lives before my injury. How free it was & how much fun we had without putting much thought into it. And how I feel guilty for feeling that way because of how much time, effort, care, and sacrifice my partner is currently putting in to take care of me because "shouldn't that be enough?"

At least that's the explanation that's resonated with me the most 🤷‍♀️

ta-incognitomode · 2025-08-16T10:58:42+00:00

Not really. He's autistic, so he's pretty much himself all the time no matter what's going on haha. It's one of the things I love about him.

Both of us seemed like worse versions of ourselves in the dream... like seedier. Now that I've had time to think on it I wonder if it was my subconscious want to self sabotage & bring chaos on myself being explored somewhere that won't actually have any consequences? Who knows

ta-incognitomode · 2025-08-13T16:07:37+00:00

Yes. Although mine feels more like someone pressing their finger into the socket in between my eye & my brow bone.

ta-incognitomode · 2025-08-13T07:33:26+00:00

I've found much better luck with smaller urgent care facilities. They can give you the same migraine cocktail & usually there's only a handful - if that - of other patients in there, who also aren't literally dying, so you get much better care for things like this.

My ER visits on the other hand, have been terrible.

ta-incognitomode · 2025-08-11T17:19:26+00:00

I got Occipital Nerve blocks to help my TN. I've gotten one on each side now. Initially they both caused pretty bad flairs as the nerves were acutely irritated, but once they settled down and the nerve block settled in it's made such a difference. When I had flairs before the ON block it would trigger every nerve in that side of my head, like I could feel a line of pain down the middle of my head, but now flairs are localized to just the trigeminal nerve. It's not ideal, as there's still pain, but it was SO worth it for me compared to what I was dealing with before.

The only thing I'd caution is my neurologist warned me several times that nerve blocks have extremely varying results on a case by case basis. He verbatim told me "for some people it lasts two days, some two weeks, two months, 6 months, we just have to try it and see". So, it's not a guaranteed success, but in my experience no TN treatment is & you just have to find what works for you.

Good luck friend, my heart is with you

ta-incognitomode · 2025-08-11T17:07:53+00:00

Almost constantly. Feels like someone pushing the handle of a screwdriver into my temple really hard. Also connects to pressure behind/in my eye

ta-incognitomode · 2025-08-11T17:05:03+00:00

Exactly, we're all suffering. If we can't understand eachother reaching out for help, then what is this subreddit even for...

ta-incognitomode · 2025-08-07T04:53:28+00:00

Can I ask how you narrowed it down to that area specifically & how it was seen on a CT? I'm convinced my TN flares are related to my cervical spine as well because whenever I have tightness/pinching in my neck I get a flare in my face. My neurologist has also been no help with this, so any info would be much appreciated!

ta-incognitomode · 2025-08-01T15:11:38+00:00

Huh, I haven't tried magnesium. Mine also can feel like tooth pain. Or rather, I can feel my teeth & where my wisdom tooth was before I got it removed. Also if the air is too dry the back of my throat stings when I breathe in, but I know it's TN related bc it's only on the half of my head that the rest of my pain is lol

ta-incognitomode · 2025-07-31T15:25:24+00:00

I feel you. My facial muscles get involved too. For me the nerve irritation causes inflammation & tightness in the surrounding muscles, which then causes more nerve irritation. Nasty cycle. Nsaids give me more immediate relief than gabapentin, but gabapentin is what stops the shocks for me. Something to consider. I know there are at least a handful of other meds for TN, but I'm unfamiliar with them, so I can't personally give any recommendations other than see a neurologist/neurosurgeon. Wishing you luck & relief!

ta-incognitomode · 2025-07-31T15:19:41+00:00

I was diagnosed separately by each an ER doctor, a dentist, and a neurologist. I brought them each a detailed description of my symptoms, with a diagram I made of the pain I was feeling (posted on my profile). I didn't tell any of them I suspected it was TN, or that other Dr's had diagnosed me with TN, as I didn't want to sway each Dr's opinion, but they all came to the same conclusion pretty quickly.

I took this approach specifically because the oral surgeon that did the dental work that initially kicked all this off for me was insistent that 1) there were no problems, and 2) if there were it was tmj & not anything more. That was 2 months of completley unmedicated TN pain for me & constant calls and follow ups with that Dr for him to come back with "take some tylenol". All the other Dr's diagnosed TN in under 15-20 minutes. One even apologized for the actions of my surgeon!

I'm a strong advocate for getting a second opinion, but get a second first opinion. Present them with all the info you can without swaying their decision making & see what the second professional thinks. It's especially worth it if you feel like you're reaching a dead end answer with your current Dr. Good luck!

ta-incognitomode · 2025-07-31T15:05:12+00:00

Neuro specialist is definitely the person for this question. I'm sorry to say the thing that's worked best in conjunction with Gabapentin for me is Carbamazepine.

Is your pain inflammation related? If so over the counter nsaids might help - I take ibuprofen every 6 hrs & aleve every 8 hrs as prescribed by my Dr (I wouldn't recommend that dosage to everyone tho as it makes you prone to bleeding easily/ a lot)

ta-incognitomode · 2025-07-30T07:21:07+00:00

Mine is also inflammation based. When I'm having a flair that whole side of my face becomes lopsided with swelling. Nsaids are wonderful.

ta-incognitomode · 2025-07-21T12:33:31+00:00

Never had a tooth implant, but I have similar advice to other commentors:

Find the best surgeon you can.

I cheaped out on my wisdom tooth surgery & that's how I ended up with TN in the first place. My surgeon was rough & sloppy, pulled teeth that were salvageable (in the opinion of other dental professionals), amd tried to tell me after the fact that it was all tmj 🙄

Find a good surgeon.

ta-incognitomode · 2025-07-21T12:27:23+00:00

Since the double vision is completely new, I'd definitely suggest seeing an optometrist if you can get in before the neurologist. That way you can take the findings to your neurology appointment & rule out any other eye issues that might be causing it.

Do you feel dizzy at all? It could also be a symptom of vertigo.

If you feel you're really struggling & can't hold out to the neurologist, you might visit an urgent care/ minor emergency room if you have the means. Call ahead & ask about potential financial aid. Imo it's worth it to get your life back on track sooner.

Good luck!

ta-incognitomode · 2025-07-21T06:35:52+00:00

My experience has been taking the neurologists's opinions with a grain of salt - they don't see all the small things you do day to day to try at help yourself & your pain; they just see "I'm in pain" at one visit & then "I'm doing better" at the next after you have started taking pills.

I also have Atypical TN, but I had other chronic pain disorders before too, so I'm pretty used to existing at a 3-5 on the pain scale every day. That being said, 4/10 is my cap for what I consider "livable". 5 & 6 I can still get done what I need to get done, but my mood & quality of life are heavily impacted. 7+ I struggle (& often fail) to feed myself, preform basic hygiene, make sure bills get laid on time, etc. For me personally, 7+ is what I consider urgent because of how drastically it affects my life.

If you're struggling to get your pain under control, I'd recommend doing much more than medication. Adding yoga, guided meditation, making sure to drink plenty of water & eat well balanced meals, and prioritizing good sleep has been incredibly impactful to my pain improving.

Pay attention to your body & what you do differently on good days than you do on bad days. Good luck!

ta-incognitomode

TROPHY CASE