Hi, my name is TiellyTenn. I'm here because I am bedfast and think too much. I have long covid, Dysautonomia, OI (may have morphed into POTS), and new this week is CKD. Hoping to learn more here than I do from my fellow medical professionals.
Hi, my name is teachermom1992. I'm undiagnosed and I am desperate for answers because I need HELP. My body has been doing crazy things since 2024 and I have been to countless appointments, tests and specialists (what is avaliable in my area anyways)
This is going to be a long read but I am hoping (begging and praying🙏🙏) someone can help me.
My "Before" Baseline :
Baseline: Always active (high school English teacher, mom of young kids born sept 2022 and oct 2025), baseline normal always perfect BP.
Lifelong info: Migraines since age 12, always freezing cold (loved jackets, fuzzy things, heated blankets, saunas, etc) but with a kinda low heat tolerance (would get super red faced and later a heat rash if I overheated - but it took a lot to get there, like a full day / days of being in the heat and being very active), easy bruising, extreme clumsiness (I run into things all the time, even doorframes), hyperextending joints in some places, and a few random fainting episodes over the years when tired/dehydrated.
Where Everything Shifted (July 2024 while on vacation at Disney 😭):
Out of nowhere in July 2024, I developed severe, unremitting cyclic nausea and vomiting. I am talking we were on vacation 18 hours from home and I woke up thinking I had to get sick and then I didn't stop for basically 7 months. Let's out it this way, I lost FORTY-FIVE POUNDS from being sick.
Ended up having my gallbladder removed in Sept 2024 (HIDA scan said hyperactive gallbladder can cause that as well so we had to try something), but the nausea/vomiting came back 6 days post op. I was on short term disability from my job as a teacher from September to February, when i finally stopped getting sick daily.
The Pregnancy Remission:
My symptoms started to get better, i thought because we had finally found the right medicines to knock it. Then, I found out I was pregnant in early 2025—and remarkably, all of my nausea and dysautonomia symptoms vanished 100% during that time. I felt amazing throughout pregnancy.
The Postpartum Crash & What Episodes Feel Like:
Shortly after giving birth earlier this year, my body has slowly but completely collapsed into severe autonomic dysfunction since about 3 months pp. My daily episodes and symptoms have slowly started to come back and feel like:
➡️Tachycardia & Bounding Pulse: Walking room-to-room sometimes makes my heart rate skyrocket (recently hit 150–170 bpm within minutes on a slow treadmill stress test). I feel a massive, pounding pulse in my face, ears, and head.
➡️Temperature Storms: I get severe cold chills and deep internal shivering, which quickly flips into intense heat intolerance, facial flushing, and sweating. Like all over sweating for no reason. To the point I am so paranoid to be hot and I love in the south - so hiding inside isn't fun.
➡️Sleep-to-Wake Inertia: Waking up is brutal—my BP drops low, and I feel like I physically cannot open my eyes or wake my brain up. Almost like I am drugged.
➡️Physical Intolerances: Deep, aching soreness in my legs and feet (relieved by walking/stretching, was told it was plantar fasciatous since it gets better with movement), severe urinary urgency/frequency shifts, zero alcohol tolerance (and not that i was a huge drinker but I am a millennial, I have for sure woken up in a field somewhere and I had a good time in college), and sudden nausea flares and facial flushing. Also being HOT is the worst thing imaginable. Like I want to rip off my skin and run away from everything and everyone till I am cool and occasional my body will feel "heavy", mostly my legs, while I am going up stairs.
➡️Systemic Stress Surges: When my heart rate spikes, my BP can jump as high as 180/91 from the adrenaline surge. But there have been days when I wake up and it is 83/42 and I can't get myself out of bed. I feel faint. And that triggers panic of course which makes it all worse.
➡️not wanting to argue or get political about it but it is relevant, I did have covid at least 4 times confirmed, once while I was 8 months pregnant and got the vaccine
➡️I have been tested for all the normal things. Diabetes, thyroid disorders, had an ANA panel. All came back "normal" or there was another reason something could have been off
➡️MOST RECENTLY AND WHY I NEED HELP
On Monday I woke up and my bp was low. I took nausea meds, drank water and tried to push through the things because I needed to leave for work. I started feeling like I was going to pass out to the point my husband came home from work, I had to call my neighbor for help and and we went to the doctor (not the ER because they always tell me i am dehydratedand send me away and I'd rather pay a smaller bill and see my doctor who is trying to help me find answers. THAT SAME NIGHT I PASSED OUT in the bathroom floor. I woke up nauseous and with stomach cramping, felt super hot, went to get sick and all I remember thinking is I need to lay down and being SO hot and sweaty. Next thing I knew I was laying on the tile floor covered in sweat and I couldn't feel my arms or hands and my body felt so heavy. I had to use an Alexa device nearby to call and wake up my husband because I couldn't yell loud enough for him to wake up.
We are currently TRYING TO connect any dots that may be related or that could help find an answer. I had a negative tilt table test. I do take anxiety medication and have for years. I do not take extra to sleep if I need to wake up early the next day, but I do struggle to fall asleep. I had had a heart monitor on twice and an echo, my heart is structurally fine. Neurologist says she thinks it is some form of dysautonimia but wants to dig more.
Can anyone give me any insight?? Does this sound like something you have experienced?? I need HELP. Desperately. I want to be a good mom again. I have 4 kids, 2 of which are little and need me. I want to be a good teacher again and full of the energy and life that made me good at it. I want to live my life without carrying around fans, water, cooling towels and a BP monitor OR AT THE VERY LEAST know why, so when i have to explain things i have an actual answer. I just need help. I have never been so sad, terrified, and just defeated in my life. I just cry and cry and want answers
Please, I would love to hear your experiences or what has helped you! 💜
Hi, my name is ccdougie13. I'm undiagnosed and
3 reactions Hi, my name is Jezebella. I'm here because
#MightyTogether #Depression #ChronicIllness #Dysautonomia #EhlersDanlosSyndrome
4 reactions Hey guys. I’ve had chronic pain headaches and migraines since I can remember alongside a huge array of other neurological symptoms (I think my doc said it’s dysautonomia for those?) such as numbness/tingling and brain fog and temp disregulation and fatigue. All of it super bad.
My neurologist wants me to try out topiramate for migraines and I’m a bit scared to try it because of all the horror stories online. Does anyone here have any good experiences? Are the side effects worth it? From what I have heard a lot of them, I already struggle with pretty bad and don’t want them to get worse… Kidney stones and glaucoma also terrify me.
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Hi, my name is Lily. I'm here because I have several rare chronic illnesses plus some not so rare ones. Two that are the primary behind a lot of secondary are Autoimmune Autonomic Ganglionopathy and Autoimmune Gastrointestinal Dysmotility. My mom also lives with myasthenia gravis.
#MightyTogether #Migraine #AutismSpectrumDisorder #ADHD #Dysautonomia #AutoimmuneAutonomicGanglionopathy #Gastroparesis #EhlersDanlosSyndrome #deltagranulestoragepool #POTS #PolycysticOvarySyndrome #Scoliosis #accomodationparesis #MastCellActivationDisorder #longcovid
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To anyone who would like to help; my name is Mimi and I'm looking for a new cardiologist/neurologist. Preferably someone in the southeast. My current cardiologist is ignorant of my words and only gives me medication to "manage". Looking for someone who will value my opinion as the patient, and do testing if necessary or preferred. I've had Dysautonomia since I was 7, and POTS since I was 13, along with PAC's. #Dysautonomia #POTS #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome
2 reactions Hi! My name is TransientJellyfish6. I'm here because I have dysautonomia along with multiple heart issues. I was diagnosed when I was 7, making my case rare.#Dysautonomia
1 reaction Hi, my name is ForgottenWanderer. I'm here because I am not actually sure what is wrong with me. I've been dealing with doctors for about a year and a half now, and they still don't have an actual diagnosis. I know that if I eat certain foods, I end up with a racing heart, shortness of breath, brain fog, and seborrheic dermatitis. I'm just trying to find some people with similar issues.
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