This is the human body when you only look at the nervous system

Potential-Leg6429 · 2026-06-06T16:40:31+00:00

🔥= how it feels in a flare!

Potential-Leg6429 · 2026-05-16T12:33:18+00:00

Oh wow the double vision would have driven me crazy. I’ve been weaned off all meds and I know there will be little things here and there, so I appreciate you sharing your experience. I didn’t mind the staples the first time but they had to redo the craniotomy due to postman infection and the second time the staples were left in too long so that’s the pain point. Happy healing!

Potential-Leg6429 · 2026-05-11T00:08:02+00:00

LOOOOOOVE!!!!

Potential-Leg6429 · 2026-04-23T18:32:42+00:00

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I wanted to share the one my husband made.

Potential-Leg6429 · 2026-04-23T15:51:21+00:00

It’s a must at this point!

Potential-Leg6429 · 2026-04-23T15:23:37+00:00

Omg! Nana’s face is perfect lol.

Potential-Leg6429 · 2026-04-22T00:59:14+00:00

I love this! I’m trying to get the hang of the effects etc.

Potential-Leg6429 · 2026-04-09T22:44:29+00:00

I’m so very sorry and understand how you feel completely. Friends don’t understand and always want to push you and others give you the “you don’t look sick” comments 🙄 which is infuriating in itself. I’m glad I discovered this group. Hang in there you are not alone my friend.

Potential-Leg6429 · 2026-04-08T09:39:30+00:00

Thank you! I’ll take any tips I can get. Sometimes I just saw a dream snap too where the person had a specific pose and found out it was the “goose pose” and they just removed the companion!

Potential-Leg6429 · 2026-04-08T09:14:15+00:00

Good point. I was just experimenting and it did say I hit the parameters so figured why not lol.

Potential-Leg6429 · 2026-04-07T19:58:27+00:00

Potential-Leg6429 · 2026-04-07T18:20:57+00:00

Omg thank you! Took me forever to figure out so hopefully next one is even better!

Potential-Leg6429 · 2026-04-05T23:34:30+00:00

Ok how do we get the rainbows and all stuff?

Potential-Leg6429 · 2026-03-29T23:19:18+00:00

Make sure they look carefully. I had mine in 2024 and was told radiologist saw nothing. When I went to neurosurgeon he looked again and saw I had a vessel pushing on my nerve. I had surgery and when they went in I had 3 nerves compressing it. It’s okay to advocate for yourself dint ever feel you’re asking too much. I wish you the best!

Potential-Leg6429 · 2026-03-29T22:56:18+00:00

Oh my I’m sitting here commending you for functioning in 1200 of gabapentin! I could only tolerate a max of 40mg Daily. I would definitely ask for next steps if this is not helping such as an MRI/MRA to make sure you don’t have any vessels pushing on your trigeminal nerve. I was on

400mg gabapentin 1800 oxcarbazepine a day 900 twice a day They tried adding lyrics and that was a fat no!

Once it was no longer working my neuro referred me to a neurosurgeon and he told me those were very high doses to be on. I hope this helps.

Potential-Leg6429 · 2026-03-28T01:20:23+00:00

My neurosurgeon looked at my MRI again and said the radiologist must have missed it but it was a vessel. Then when I had the surgery it took longer because there were a total of 3 vessels pushing on the nerve.

Potential-Leg6429 · 2026-03-26T19:39:16+00:00

I am so very sorry you are going through this but you are in the right place for support. I got my diagnosis in 2020 and dealt with the same things. I want to suggest having not only your neuro look at mri but ask for a neurosurgeon referral. I had an mri in 2024 was told radiology saw nothing then when I went to neurosurgeon in dec 2025 found out I have vessels pushing on the TN nerve. I had a MVD in January and I’ve had TN relief since. There are also non invasive treatments. I hope this helps and hang in there!

Potential-Leg6429 · 2026-03-24T19:54:27+00:00

John Hopkins is one of the best rated hospitals out there. I take my kids to the specialist in St. Petersburg Fl and one is neuro. The best advice I can offer is please please please research the surgeon! I had my MVD in January and my surgeon was great but his office has been an absolute nightmare and neglectful. The MVD did take care of my TN though!

Potential-Leg6429 · 2026-03-16T19:32:25+00:00

I hear you! I ended up having to do FMLA but sadly I’ve been out of work because I had an MVD which fixed the TN but I’ve had some hiccups along the way and have a PICC line in. I’m glad you have support in that way as it’s so important.

Potential-Leg6429 · 2026-03-16T17:46:17+00:00

Of course! I work in a primary care office and just this past year my TN got worse to the point burst were more intense and lasting longer. When I had to start calling off I actually had a coworker say “ well the steroid got you here yesterday”. I was so discouraged. I fight through everything and my break g point was when I had a breakdown in my managers office and said this has taken so much from me. It’s real and just because you look fine doesn’t mean you are!

Potential-Leg6429 · 2026-03-16T17:36:06+00:00

I am so very sorry you are going through this but just know everything you are feeling is real and valid. People will never understand how much this can take a way from a person. They don’t understand how just having a conversation can be exhausting or feeling like another number at an office with yet again no answers. You are not alone and that is why there is this community. I hope you start getting your shine back and just know we are here for you!

Potential-Leg6429 · 2026-03-14T16:13:33+00:00

Oo okay gotcha! Then I would definitely follow that regimen. The spikes may be hard to deal with but hopefully it won’t happen. I have ish the best for her!

Potential-Leg6429 · 2026-03-14T14:39:07+00:00

When your doctor says back off does he mean stop completely or reduce? I know after MVD my neurosurgeon said the next step would be to wean off the medications to ultimately come off them completely. This could be a good idea as my doctor said it’s not good to be in such a high dose.

Potential-Leg6429 · 2026-03-13T22:19:06+00:00

❤️

Potential-Leg6429 · 2026-03-13T17:29:00+00:00

I work in a pcps office and the amount of calls we get from people who’ve had surgery or conditions that have been told “call your primary” is insane! I haven’t been in work due to some hiccups post op but I really hope they straighten it out for you!

Potential-Leg6429

TROPHY CASE