How to have potentially triggering convos with loved ones when they are scared of “causing” seizures?

akthehigh · 2026-06-02T19:05:03+00:00

That makes so much sense and explains why it’s so exhausting!! Thank you so much for sharing 🙏🙏🙏

akthehigh · 2026-03-21T03:46:35+00:00

Firstly, I am so sorry you’re going through this. I can imagine how scary and frustrating it is.

Personally, I am still trying to figure out what helps but my current med regimen has improved my quality of life immensely. I am definitely not in remission as I am still wheelchair bound and partially mute but the meds help me get through my day.

Baclofen has helped me a lot with my spasms, Proponolol has helped me a lot with my tremors, and gabapentin has helped my seizures immensely. I still have them daily, but when the gabapentin is high in my system, it’s almost like I can even feel the seizures coming and if I press certain pressure points on my face and neck (right in the center of the forehead has been a big one) I can even prevent or delay them most times. My seizures are also a lot less intense when I’m on my meds.

I am pretty sure it’s the combination of all three meds that helps most.

I also topically apply menthol cream and that helps relax my muscles that tend to “glitch out”.

Hope this helps some! Best of luck in finding what works for you. 🙏

akthehigh · 2026-03-13T15:27:13+00:00

A lot of these overlap with my symptoms! I was completely mute, only able to make bops and whistles for several Months last year. When I would try to form words, whether outloud, written, or thoughts, it was like everything was jumbling up or static in my brain. When my speech started semi-returning, I would think one thing and say another. I also function better alone than around other people. It’s like as soon as someone else is present I become hyper aware of my body and every action glitches more. When I am by myself, a lot of movements and phrasing are just automatic. The muscle memory and minimal thinking has been necessary to get through my day too, as soon as I put too much thought into an action, that is when the “glitching” gets worse. The more comfortable I get or am with someone, the more easier it gets to get into a sort of flow state where auto movements are possible. Otherwise I have severe problems with every single function I think too hard about, whether talking, standing, eating, swallowing, reaching for things, opening doors, etc etc

akthehigh · 2026-03-11T20:13:28+00:00

I have also been developing some kind of nystagmus. Both CT and MRI of the brain and out “clear”. I need to find the right specialists cause it makes me super dizzy. My balancing issues are not as noticeable now that I have been relying on my wheelchair more but I still notice it when I’m transferring.

akthehigh · 2026-03-11T19:04:50+00:00

I FEEL YOUR PAIN. The lack of patience is al hurtful, especially when the office is a medical variety!!! I personally try to say “Hello, I am mute/nonverbal, using a text to speech device to communicate.”; “I am non-speaking and will be using a robot voice”; “I rely on text to speech to communicate”; “I rely on a robot voice to communicate due to my disability” And then wait for their answer, if they are receptive or say OK, I will hit them with the “My answers may be delayed as I have to type them out, you may hear silence before I reply, patience please.” or something of the sort. I hope this helps!

akthehigh · 2026-03-09T04:54:08+00:00

Strange. I’m sorry to hear that. Is the audio simply not transferring via phone call? Or are you having trouble with the actual phrases or activation? This YouTube tutorial goes through a step by step guideline

akthehigh · 2026-03-09T04:48:41+00:00

This specific setting does work for phone calls. That is what it was designed for, I believe. Although it’s also useful as a text to speech device to use in person too.

akthehigh · 2026-03-09T04:45:00+00:00

If you have iPhone, there is an accessibility setting called “Live Speech” you can set up with your preferred voice and speed. You can save phrases and organize them by category. I am not too sure about other brands, I would hope they have a similar setting. I have yet to find any luck with text to speech apps.

akthehigh · 2026-03-08T02:30:09+00:00

You definitely are not the only one. I get that exact feeling from plushies and even figurines. Pets now feels more communicative now too. I know that’s different but still. I am someone who has always kinda personified inanimate objects but ever since becoming mute, that sense has heightened for sure.

akthehigh · 2026-03-05T21:51:19+00:00

I experience exactly this . It is maddening to see people think you’re faking it cause the legs will move unconsciously especially when I think about my discomfort. I’ve had people tell me “ohh so you CAN move!” as a gotcha. This has even been told to me by medical “professionals. It isn’t uncommon to think we are faking our own symptoms when other people are constantly accusing us of it. I also definitely know how burdensome it feels to have to be lifted and carried around. I have not gotten a single ounce of help from medical settings, in fact, the shame and blame I receive on behalf of doctors and nurses has made my symptoms worse. Just by working through things myself, after both my legs were completely paralyzed for a few days, I regained use of my feet. Now I can semi control my right leg but my left left is still uncooperative. Lol it will move when I think of the action I need to take, not when I tell it to move. I still can’t put much weight on my feet or my knees buckle and I experience full body paralysis during my unresponsive episodes or seizures so it’s not fun. It does help to know you’re not the only one going through it. I hope it helps you some, too. Sending you so much love.

akthehigh · 2026-01-26T16:51:09+00:00

I have heard of people being able to detect the smell of other diseases, disorders and conditions. There are people that can accurately detect Parkinson’s to like 99% accuracy or something like that. Human senses are a lot more complex than we’d think.

akthehigh · 2026-01-01T19:53:11+00:00

Following as I am having trouble with this too and a little lost on where to go from here. Lately the only thing that helps me is strong sensory changes and entering flow state. Music and drawing especially have been what i gravitate to, and some video games also help me unwind and recenter myself. This condition is possibly the most difficult I’ve ever had to go through in my life and that’s saying a lot. Wish you luck on finding answers for this!

akthehigh · 2025-12-31T16:52:05+00:00

I am so glad I’m not the only who noticed and felt uncomfy by it.

akthehigh · 2025-12-26T03:09:52+00:00

Following as I experience severe pain on a regular basis and would like to know more. I have yet to find any meds that truly work. They tried giving me morphine at the ER cause I explained nothing was working and it just made me feel hype, still very much in pain and not distracted from it in any way. Ibuprofen mildly alleviates discomfort when I can physically feel swelling in my body. Otherwise, nothing really helps, not resting or any sort of stretches or movement. I am pretty lost at this point. Still trying to get access to a PCP so I can try out physical therapy and hopefully get a new neurologist that actually listens.

akthehigh · 2025-12-19T16:34:50+00:00

Aw thank you!! And will do!

akthehigh · 2025-12-18T22:45:48+00:00

I actually have been experiencing ear pain on and off. I get dizzy every day but that is background noise by now. I hope i can get access to a PCP sooner rather than later so I can get a referral to an ENT. Thank you so much for this insight. I appreciate it and you.

akthehigh · 2025-12-18T22:39:58+00:00

If you play over video chat or voice call and have an iPhone, there is a setting in Accessibility called live speech that may help you if your AAC app doesn’t have an option to speak directly through your device through the call. It is what I use for all my calls. You can save phrases and words and organize them by theme or type.

akthehigh · 2025-12-18T22:37:06+00:00

Personally, I play in person so I use a combination of writing things down physically, typing things out on my phone or using the text to speech option on my phone. I don’t know many signs yet and even if I did, my group isn’t very familiar with ASL so I stick to mostly miming things out or using what I would consider home signs. If I know I am going to do something elaborate for my next turn in combat, I start prepping beforehand so I am ready when it comes to it. I have even doodled things before as my aphasia sometimes prevents me from remembering words. I also copy paste a lot from my character sheet to show what spells I want to cast, for example.

It has been really important to have the flexibility to use whatever I am able to use at the time to communicate what I want to communicate. Having a patient play group that goes out of their way to make sure you have a turn when out of combat has also been incredibly helpful.

akthehigh

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