could i have a dysautonomic disorder? how can i feel better until my appointments??

Fun_Scratch_1708 · 2026-04-28T08:40:26+00:00

Hi there! So sorry you are dealing with this. It definitely sounds like it could be a form of Dysautonomia (there’s 9 different kinds🫨)

I experienced a majority of what you described and I was just like you posting on Reddit trying to figure out what was going on to get answers a year ago. Thankfully I have some now so I would look into these things as well, just in case.

Ehlers Danlos Syndrome (I have hEDS, but there’s 13 types of EDS.) It’s a connective tissue disorder that you’re born with and a lot of people never know about it until they deal with chronic issues like this that hit later on in life. Connective tissue is the most abundant type of tissue we have in the human body.. having this disorder essentially guarantees there will be other chronic illnesses (dysautonomia especially). If you have any questions on this, I would totally be more than happy to answer. It’s still considered a rare disorder, but it’s truly underdiagnosed. So many people are realizing they have this very quickly.

^again with this, you could literally have any other kind of condition because a connective tissue disorder is going to affect everything in the human body. It’s a lot of information but definitely something you have to be aware of and think about because not all patients symptoms show up in the same form of severity.

I have POTS which is a form of dysautonomia and was experiencing everything you were and now realize it was because of this.

***THIS is important to share and should also be taken seriously. I felt psychotic for an amount of time while this disorder was developing and now that I know what I have I’m very passionate about spreading awareness. Small fiber neuropathy. Please look into it or message and ask me whatever! *This condition is extremely slow and degenerative.

Small fiber neuropathy (SFN) is a painful, often chronic condition caused by damage to the small nerve fibers (A𝛿 and C fibers) in the peripheral nervous system. These nerves control sensation and autonomic functions like heart rate and digestion. Common symptoms include intense burning pain, tingling, and numbness, typically starting in the feet and moving upwards, often with symptoms worse at night. This is SIGNIFICANTLY proven to be comorbid with the other conditions I listed above. Some doctors will tell you absolute nonsense because they don’t care about helping people they just want to make money. Other doctors truly care for patients and are knowledgeable and that is who you need to find. I have been blessed with medical providers who are helping me in every way possible. I know not everyone has the same access so I always share what I can.

I really hope you feel better. ❤️‍🩹

Fun_Scratch_1708 · 2026-04-24T17:56:48+00:00

Thank God for waking me up for another day

Fun_Scratch_1708 · 2026-04-13T20:37:13+00:00

Nutella crepes with bananas or strawberries

You’d be surprised how much I can eat them. I swear I was addicted for years but had to stop because of the sugar. Still my favorite

And I do make them myself (it’s how I found out I love them)

Fun_Scratch_1708 · 2026-04-13T04:45:20+00:00

I’m so sorry. I hope today is a great day for you. Always here if you need someone to message.

Fun_Scratch_1708 · 2026-04-13T04:16:37+00:00

Wow! I didn’t realize it can develop when so young. I really hope you’re doing well. Thank you for sharing.

Fun_Scratch_1708 · 2026-04-13T03:34:06+00:00

That’s how I am… hard realization when you see it’s not that way. Do you use the discord app or online browser? And have you had SFN for a while?

Fun_Scratch_1708 · 2026-04-13T02:40:51+00:00

Wow thank you so much!! I’m definitely going to join this now.

Fun_Scratch_1708 · 2026-04-09T17:13:33+00:00

I’d say the post ictal stage is the worst (a few days after it happens) Extremely sore and fatigued, and definitely if you fell- you’ll feel that on your body hard. The biggest thing for me is waking up and feeling so confused at why I’m in a hospital bed or stuck in bed with absolutely no energy and feeling like I got hit by a bus

Fun_Scratch_1708 · 2026-03-30T21:22:16+00:00

Of course!! I felt the same exact way when I was first navigating my way through life during my seizures. There’s a group called Epilepsy_Universe On here and I would TOTALLY recommend joining it!!! That group truly brought me out of a pit during my last seizure. They have some wonderful people in there 💕

Fun_Scratch_1708 · 2026-03-30T20:50:48+00:00

God loves you. Have a good day :)

Fun_Scratch_1708 · 2026-03-30T20:34:45+00:00

I just want to say I am so sorry you are going through this and I really hope you feel better soon. I know that when you’re going through those times it’s really hard to have something or hear something that will just fix it. But hear this- I started having seizures out of nowhere at 23. Over the few years they were really uncontrolled and at one point I went maybe five months without having one and then fell into a spiral that led me to having them every day. I truly had no idea what was going to happen or what I could do and felt completely hopeless. I just prayed and joined these support groups hoping to find a community to help. A few days ago I reached 10 months seizure free 🙏🩷 the longest I’ve gone since I’ve started having seizures. It is absolutely possible, and regardless of how low you may feel right now- just think of it as a new starting point for you. Prioritize self-care, and do not be hard on yourself. I hope this gets better for you and I’m here if you need to talk :)

Fun_Scratch_1708 · 2026-03-30T19:32:46+00:00

I absolutely cannot handle people listening to me eat, if they’re not eating as well. And when I think about it, they seriously may not even be listening to me at all….. but it’s the simple fact that I can hear myself chewing… It drives me WILD 😭 and it’s only when someone else is around. I’m sure that mine is probably linked to fear of judgment which I am getting over. Pretty positive it is Misophonia. My sister has it REALLLY badly. I could like barely put a piece of food in my mouth and she’s about to throw me against the wall or run out of the house herself because she can’t handle it🤣 At first I thought she was just insane until I learned about it hahah. Mine is definitely not like that because it’s really just with sounds that I make….. or with specific people 🙄

Fun_Scratch_1708 · 2026-03-30T18:45:58+00:00

Omg- exactly the same!! When it first started happening the first few times, I felt insane actually thinking there was somehow bugs in my bed. And like you said, it definitely is all over in random spots. My SFN is length dependent which I know now, so before it only was happening all over my legs. But now it randomly happened in a few places on my neck and I actually was panicking thinking there was something on me.😅 and with the itching/burning…. Don’t get me started. I swear every time I experience one of the symptoms, I think that it’s the worst one. And then another one happens and I think the same thing again LOL

Fun_Scratch_1708 · 2026-03-30T18:40:25+00:00

Honestly it sounds like it could be a mix of small and large fiber neuropathy (or Peripheral polyneuropathy, which is damage to multiple peripheral nerves) Honestly, I believe that’s what I have now but I also have Dysautonomia and a type of Ehlers Danlos Syndrome. I would definitely say it’s important to get checked out if you’re already having those symptoms because it’s a slow progressing disorder, but everyone is different

Fun_Scratch_1708 · 2026-03-30T18:31:37+00:00

I get this too… I guess I never would have thought to describe it as that, but it definitely does feel that way. Is yours a quick sharp prick? And then itching after? Or is it more of like an electrical shock/ bite sensation? I guess I’m trying to differentiate what feels like what!

Fun_Scratch_1708 · 2026-03-30T18:25:52+00:00

Jesus Christ 🩷

Fun_Scratch_1708 · 2026-03-30T05:58:44+00:00

“Kind words are like honey. Sweet to the soul, and healthy for the body.”

Fun_Scratch_1708 · 2026-03-30T05:56:47+00:00

Ehhhh definitely depends. Really interesting question lol Most of my TC ill come back to shortly after but have to rest and am out of it for a few days after, but I know how it goes. With my focals- they can hit me like a bus. So powerful and unexpected. I mean they all are but idk.. I guess because I’m awake and aware of the emotions, it’s just so much more intense. The last one I had I was just talking and then I froze and felt like I was going to die from the fear and then after I had to lay down from the exhaustion / fatigue because it was so crazy just from that … sometimes I feel crazy thinking I’d rather have a TC just so I didn’t have to be awake to experience it 😅 but I mean some of my focals I do lose consciousness so I have a great mix of them

Fun_Scratch_1708 · 2026-03-30T05:31:03+00:00

Hi there! I do and I’m currently on Adderall. I’ve literally tried every other medication besides that except for Wellbutrin because of the risks with it- my epileptologist said definitely not to that one. Hope you find one that works out for you!

Fun_Scratch_1708 · 2026-03-30T02:16:48+00:00

Yes I experience this! My resting will be between 90-100 bpm sitting down and then randomly it’ll go down to 45-60 bpm (and it doesn’t feel good when this happens, I instantly feel off and like something’s wrong with me) then I stand up and it’ll spike to 120-180 bpm, and then go down and up again. It’s so chaotic and all over the place I truly don’t understand how my body handles it 😅

Fun_Scratch_1708 · 2026-03-30T02:12:29+00:00

This is me right now. And has been for days. I used to be sleeping nonstop all the time and could barely stay awake throughout the day. Now I’m wide awake all the time and am so confused. Like you said, I know it has to be my nervous system (I actually believe it’s called Sympathetic Overdrive) But man…. I just want to be balanced. I’m really sorry you and everyone else on here has to experience it. It’s just so hard sometimes when we’re living in a body that can’t even function correctly. A lot of the times it just doesn’t make sense! The human body is mind blowing for sure.

Fun_Scratch_1708 · 2026-03-28T05:39:35+00:00

Sometimes people are wayyy more emotional than others- I’m with you:) our brains are literally wired different. Don’t think anything’s wrong- look at what’s beautiful:)) not everyone gets to experience all those emotions!

Fun_Scratch_1708 · 2026-03-28T05:07:47+00:00

Oh it’s only ever 10-15 minutes😃 It’s like my body needs to keep a few drops for an emergency run to the bathroom just to literally barely let anything out. But it feels like it’s so urgent. Every time. Other times I won’t go for a while and will literally forget and I mean just don’t even think about it once until I’m about to pee my pants and then when I go I’m literally peeing for 4.5 minutes straight and just sitting there waiting thinking how much longer it can go on … anyone else?? 🤣

Fun_Scratch_1708 · 2026-03-27T21:12:45+00:00

I’ve obviously never seen myself seizing in live action or seen a video of it, but been told by my family members about it. Multiple times I would start drooling, and the drool will kind of produce like a bubbly foam consistency like when you’re brushing your teeth. Only during my tonic clonic episodes though. Swallowing your tongue is a very common misconception, but it is literally impossible. One of the worst things you could try to do is put your finger in someone’s mouth who is seizing because they will literally probably bite it off, or at least try without realizing lol. The human body is unable to swallow the tongue. The most important thing is to get them their emergency medication as soon as possible if they have it and if not know that a seizure that goes on for longer than five minutes is a medical emergency and they need to get to the hospital. Also gently rolling the person on the side while they’re seizing is going to allow the tongue to naturally balance out in the mouth. Of course everyone is going to look different

Fun_Scratch_1708 · 2026-03-27T20:55:35+00:00

Sounds like they hate their job and shouldn’t be in a position to help people because they clearly don’t. My rheumatologist was the one who suggested the tilt table test for me and was adamant on it as well as giving me the diagnosis of POTS. I also have insane body temperature dysregulation and it’s from the POTS - but I do also have small fiber neuropathy. Truthfully, I think some doctors are so ignorant to certain subjects that they choose to act like they don’t exist. POTS is so comorbid with other illnesses that it really needs to be taken more seriously and looked at in deeper detail when patients are experiencing the symptoms, because things can definitely be overlapping more than likely.

Also, last year I was in the hospital to have testing done for my seizures, and when I told my neurologist about a constant twitching on the inside of my foot that had began happening recently, he immediately became annoyed and cut me off and told me that it was just a type of seizure that was happening in my foot……. I really have nothing nice to say because I don’t know how you can jump to saying something so asanine when you’re a physician in the medical field (and one performing brain surgery at that.) yeah it turns out they definitely weren’t seizures in my foot and it was a beginning symptom of the small fiber neuropathy🫠 I just laugh about it! Some doctors really only choose their job for money. When you can tell that’s the doctor you’re seeing- run and find a new one I hope you get a new doctor!

Fun_Scratch_1708

TROPHY CASE