Dysautonomia

I'm back home now, the doctors think I had a bad POTS flare up, not sure why. I was also given a prescription for a medicine for vertigo. #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #CheckInWithMe #MightyTogether

Hi just wanted to sorry if I'm not so active, I just talked to my cardiologist and she wants me to go to the ER. I will keep you all updated whenever I have a chance. #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #CheckInWithMe #MightyTogether

I fainted at work and had to go home early. Just trying to stay positive. #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #AutonomicDysfunction #CheckInWithMe #MightyTogether

Recently, (since mid-October) I have been getting some really low heart rate readings. This week it has gotten really bad, and I’m struggling to stay conscious. I swear I’m only a fully awake human for about 4 hours out of the day, usually around this time. I have no idea what’s going on. My two thoughts are 1) maybe I’m aging out of some of my medication??? or 2) my body is DONE with my crappy sleep schedule, and it is knocking me out the only way it knows how!

Have you ever experienced anything like this? What helped? Also, should I be considering going to the hospital??? I never know when things are serious enough to warrant that. Let me know! Any and all advice is welcome!

#POTS #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome

I am glad to join this group as no one understands the bond that I have with my two dogs. I had an atypical case of guillian barre where I lost became weaker and weaker over the course six weeks to the point where I could not get up, walk, or sit up unassisted. One of my dogs was unable to go up the stairs. In the last few weeks before I went into the hospital I spent most of my time upstairs in my bedroom and the bath across the hall. I missed my dogs terribly. They didn’t see me differently I was still the person who gave them snuggles and they would still light up every time they saw me. They were the only ones who could make me forget the horror I was going through. I would gather all of the strength and energy I had to scoot down the stairs to see them. They brought me more love and comfort then anything else could at the time. For reference I have two cute gentle and lovable giant dogs so carrying them up the stairs was not an option. They continued to bring me joy and happiness post hospital stay and throughout my journey to recovery. They even learned to walk while I “chased” them trying to get their toy. The thing about dogs is that no matter what state you are in they will always see you as their person. I don’t think any of my family truly understands how much they helped me get to where I am today or how much they both truly mean to me. They kept me going when it would have been easy to give up. Even now while I have mostly recovered from my guillian barre they bring a smile to my face when I have bad days with my health from my other illnesses. #womansbestfriends #GuillainBarreSyndrome #Dysautonomia #Gastroparesis #SmallFiberNeuropathy

Hi, my name is sgould. I've been diagnosed with

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #Alpha1AntitrypsinDeficiency #EDS #EhlersDanlosSyndrome #Neutropenia #Dysautonomia #POTS #DegenerativeDiscDisease

I'm a mom of 7 and I love the gospel of Jesus Christ! It's how I survive everyday in this crazy world and where I turn for peace and hope. I'm non-judgemental and I love everyone. I'm open minded and I love gathering "misfits" in my home to share our perfectly crazy chaos and teach unconditional love.

Hi, my name is Kegkj. I'm here because I have been diagnosed with Hypermobility Ehlers-Danlos and Dysautonomia.

#MightyTogether

I've never felt more like shit in my life. I've had very unpleasant moments before, but this surpasses them all; I'm deeply depressed. I would never kill myself—I find it a stupid solution to a temporary problem and a lack of appreciation for life. However, I was on the bus on my way to the cardiologist, listening to this Lil Wayne song, “Let It All Work Out.” When I heard those last bars, I felt, just for a second, how miserable I am with such clarity, as if all those barriers between your conscious and unconscious mind that protect you from losing your sanity had disappeared. I wondered what it must feel like to end it all. I think it would probably be a beautiful inner peace, something I haven’t felt in many years.

For a couple of years now, I haven’t felt like a healthy young person. It all started around my first COVID vaccine, about three and a half years ago, I think. I began to get sick every two months, had myocarditis, and I slept through half of my classes in school—a very demanding French school that caused me even more stress because I couldn’t keep up. Also, I’ve never been mentally at peace; since I was a kid, I’ve had a lot of OCD. My mind was always overwhelmed with obsessive thoughts, preventing me from acting normally. I was able to control it with medication, but that doesn’t take away the constant, irrational thoughts that stop me from ever being completely calm.

Then there are the stresses of my relationship with my mom, with whom I clash often due to our very different personalities, and my dad, whom I barely see because he lives in another country, so we have to keep a long-distance relationship. My self-esteem was always low if I wasn’t with someone, but I could never maintain a relationship because my interest never lasted, so I’d have to move on to someone else. Despite all this, I wasn’t entirely unhappy because I thought I’d eventually reach my goals, live amazing experiences, and that everything would heal with time.

But then my whole lifestyle fell apart. Last December, I got sick the day before my graduation party, which I attended anyway. A week went by, and I was still sick. I went to the clinic, and they told me I had COVID. I thought, “No wonder I feel so bad,” and that I’d be fine in a week. That never happened. Since then, I’ve felt sick every day, every damn day. Some days were worse than others, but it was like that 24/7. I went to 20 different doctors, took an absurd number of tests, and no one knew what I had. I spent 11 months like that, with the uncertainty of not knowing what could be wrong. Despite this, I managed to stay relatively patient because I refused to think that whatever I had wouldn’t be curable.

Then a cardiologist gave me my first clue. I had already seen two other cardiologists, but this one specialized in dysautonomia and told me I had all the symptoms of this condition. "Condition" means there’s no cure; you can control it with medication, but it’s not immediate. It’s a process of trial and error, as there are many types of dysautonomia. When I found out a couple of days ago, I honestly didn’t know if my future would be as fantastic as I thought. Now, I’ll never be able to drink recklessly, will have to limit my smoking, will never do MMA again, and just won’t have the energy of a normal person anymore.

And the cherry on top is that just a month ago, I met a girl I felt comfortable with. She stayed at my place four times; I was enjoying the process and looked forward to seeing her each time she left. Then she messaged me saying she didn’t want to meet up as often and wasn’t looking for anything serious. #I am completely defeated by my existence; I can say I’ve hit rock bottom. I don’t know what’s next for me. I haven’t been officially diagnosed yet, but it’s pretty clear what I have since I’ve ruled out most other possibilities.

I don’t know why I’m writing this; maybe it’s because I want someone to listen, or simply to archive my story on the internet. What do you think? What would you recommend? I’m all ears.

By the way, my name is Teo, I was born in the United States but grew up in Chile, and I’m 20 years old. Cheers!

P.S. I understand English perfectly, but writing is hard, so I asked ChatGPT to translate this from Spanish to English. I hope it makes sense.

Hi, my name is dani35. I'm here because

#MightyTogether #Dysautonomia