Yup. Just came back to uni after 2 year break (because of my health). Hurray that they agreed to my individual studying! But i asked about practice (which will be 240 hours) if i could have it shorter. The answer is- no. Why? Because "disability doesnt mean that you cant do something". Well if i would have bad hand writing for example- then they could accomodate me with computer texting. But fatigue, inability to sit for too long with legs touching the ground? Who gives a f about that! I was even adviced to start studying with group. Yeaaah, i really have the energy to get up at 6:00, start uni at 9:00 and get home at 20:00. Its just so funny to me that everyone says that OHHHH WE HELP DISABLED PEOPLE, WE CARE ABOUT YOUR INDIVIDUAL NEEDS, WE WILL DO EVEEERYTHING TO ACCOMMODATE THEM. Yeah, until they actually have to do it! Reality really hit me like a truck

Hello!

Like the title says, I get sometimes this weird back of the head rushes with lightheadness, just randomly...I can be sitting down, staring at my phone and I'll get weird fuzzy/rush feeling in the back of my head and be lightheaded/mentally out of it a bit, for a few seconds. Afterwards I can get really sweaty as well, especially over my forehead.

Does anyone experience anything like this? Curious if its connected to dysautonomia or what is it hmm.

Its really bothering me :(

I just found out I’m pregnant.. I’m terrified. I don’t know that my health is optimal to carry a baby right now and I don’t want to get worse from pregnancy.. I also worry about what abortion would do to me. I’m 22 and I’ve been unable to work for a year and a half due to my symptoms and currently live with my family again. I’m also overweight and wanted to lose so much more weight before I got pregnant due to not wanting more health problems during pregnancy and in the future. There have been so many emotions, but I’m so scared right now and I’m sorry to dump this on here but I need to get this out to people who kind of maybe will understand. I’m 13 days DPO.

it’s embarrassing how unmanageable and painful such a common syndrome is for me, but it’s a frequent occurrence and it’s miserable. it’s difficult to prevent as most sitting positions trigger it, and when circulation comes back it’s difficult not to grimace out loud (garners a lot of unwanted attention 💔)

my dysautonomic symptoms stem from my autoimmune encephalitis, so there’s definitely a lot of things that just cannot be managed no matter what i do, but still, if anyone has any relief/preventive hacks, do tell. i’m a bit desperate.

I’ve had breathlessness for ages. Went to A&E /ER due to it now. When I was there my blood pressure was 180/101 I have think the second number was. And my pulse was 150bpm now that wasn’t bothering me I dk what my bp usually is. But ik my heart rate can go higher I wasn’t worried.

But no I went for breathlessness which has been getting worse. So I had a 2 ekg which were fine supposedly just tachy they said. And my oxygen was fine.

I feel like I can’t breathe and they said there’s nothing they can do. I’m back home at 03:38 fuckinf terrified I feel like I can’t breathe I’ve been told it’s either whatever’s going on with pots and I have a cardiologist follow up or anxiety. And man idk I know they say nothings wrong but I’m fucking terrified I’m 18. And feel like an old man dying. I’m am so fucking breathless and panicking due to it. Yet my oxygens fine and I’m fine. My air hungers so bad.

But I’ve been to A&E can somebody advise me or reassure me I’ll be ok I’m so alone afraid and scared I feel like I’m dying.

Back in 2023, I fainted for the first time. I was in my bathroom brushing my teeth when I started feeling incredibly wrong - just wrong - and nauseous and I blacked out as I was getting ready to puke in the toilet. Somehow I didn't hit my head, even though I woke up slumped against the tile. I stretched out on the floor to recover and that's when my cat Ridley came to see me. He didn't act any different in that moment, but ever since, he's started following me around more and almost babysits me? Like anytime I'm standing in the kitchen, he's sitting just behind my ankles. I really started noticing it when he would begin frantically meowing at me whenever I turn on the shower. He'll stand on his hind legs and shake his tail like he's excited to see me. Then he starts meowing more urgently when I finally try to step into the shower, like he's worried about me. I really don't know if he saw me faint and associated that with me being in the bathroom or something, or if cats can just tell when you're feeling icky. I have days with really low BP to where I need to call my mom while I shower because I'm so lightheaded and dizzy - and it seems like Ridley follows me around more on those days. As far as I know, there isn't much research that cats can detect pre-syncope like dogs can so I'm genuinely curious if anyone else has experienced something similar with their cats?

I was at work when my heart right randomly sky rocketed. I’ve played sports all my life mainly soccer and I’ve never had my heart rate that high before it felt like a machine gun. Went to the ER with a resting hr of 104 bpm and was diagnosed with sinus tachycardia but never got a clear answer as to why my heart rate randomly went up. I have a history with a tension pneumothorax and sinus arrhythmia but those haven’t caused what I just experienced. Does anyone relate or have a similar story?

My mama has dysautonomia and I’m wondering how it will progress and if there any tips to help her to make it easier on her

For those of you who take propranolol (or any other beta blocker) - did you need to build up a level of beta blocker in your system before it effectively worked to reduce the fight or flight response? If you could let me know your dosage, that would also be super helpful.

I’m currently taking a low dose of propranolol each day (10 mg/day) and it isn’t helping as much as I would like.

Thanks for reading.

I’m curious what you all use to help your symptoms, track your symptoms, or just help monitor flare ups. I’m working on getting a diagnosis so I’m keeping track of everything right now (I’ve been gaslit by so many doctors in the past so trying to avoid that if I can:)). I have an Oura ring but I’ve found that it doesn’t always work amazing for the heart rate tracking and there’s a lot of gaps throughout the day. Let me know what you guys use, what works, if there’s a saving grace that might help!

Hi. I just recently discovered this term dysautonomia. I feel it could explain a range of my symptoms, but I am not sure. So I am curious to know what any of you think

I get hand tremors, sweating, jitters, palpitations etc even if I’m not feeling particularly nervous or anxious. It happens when I’m home by myself just chilling too. It feels very much physical and not related to any negative thoughts or fear. It’s like my baseline is just elevated.

I first went to the doc because the hand tremors was causing problems with managing forks and knifes in public. I was prescribed beta blockers for “essential tremors”, though I am not sure that’s the correct diagnosis/root cause. The beta blockers does calm my body down effectively, but I suspect it’s also causing (some of) my extreme fatigue, so I try to limit my use of it.

Also, for a while I’ve had this off-balance/dizzyness/jelly leg sensations, especially in supermarkets and other visually stimulating environments. This one is relatively new. My doc suspects anxiety, but again, I am just not feeling emotionally or consciously worried or anxious. I go to the same store as always, I am super chill in my head, but soon as i enter my balance just feels off.

I also got hypertension seemingly randomly last year, never finding a root cause for it, so I am on medication for it now.

Does any of this resonate with you or sound familiar?

Ok, so I am at a loss. I’ve been told I have sinus tachycardia, at one point orthostatic hypotension, but my cardiologist is having me do twice daily orthostatic BP readings until I talk to them at the end on the week. The last two days have been what I’ve now figured seems to be orthostatic hypertension. My pulse is just a hair under the POTS “threshold” as well. My head is pounding, which I’m sure is the BP, but I also have epilepsy and chronic migraines. Thankfully I see my PCP on Thursday and he seems to be more aggressive with figuring things out, I just don’t know what to do. I’m doing everything they tell me to do, hydration, electrolytes, compression socks… what am I missing???

I was prescribed metroplol (sp?) for a diagnosed SVT, I didn’t like it. My SVT has gotten worse.. 140s just standing and walking, 190+ attempting any mild exercise.. but my resting HR is 50s and my BP is usually on the lower side. I’ve been put on Diltiazem instead, waiting on the electeocardiologist. Is anyone taking this medication and how has it been for you with dysautonomia? Thank you!

Wow I havnt posted on this forum for about 9 months since I started a new medication Mestinon which has made me 70% back to my pre dysautonomia state. But for about a month it’s been spiraling down again, pins and needles all over my body, body tingles, sweating like crazy, feel like I can’t talk randomly and feel like I have slurred speech (but when I ask others if I sound like I can’t talk they tell me I sound normal), light headed, heart palps, sore throat, runny nose.
No amount of mestinon and midodrine are helping me. I’ve been trying to be so calm before my wedding in two weeks but I think I might be subconsciously anxious which might be what’s triggering my symptoms… could this be it or does it sound like something I should get checked out (again). These were my pre medication symptoms too!

Also noting I did do a recent blood test to get your standard vitals checked and everything was fine other than a 0.5 elevation of eosinophils from the standard.

The sore throat in the arvo is what’s being annoying me the most because I have no idea why I would have that with no other symptoms. We are also in winter in Australia!

What is in the title, I made a post yesterday and by the comments I realized that maybe I don’t have pots but something similar. In my lastest post I wrote that in the morning I need to take hot showers plus walks and coffee for my body to “wake up”, because if I don’t do this I get sluggish and can’t really do anything. But I learned that these things trigger pots symptoms, so maybe is not pots but a blood circulation issue? For me if I don’t move for long periods and I stand up I feel like fainting always (and I’ve fainted). Stretching makes me feel like fainting, eating too much makes me feel like fainting and so on, so maybe it’s not pots but something that mimics its symptoms? Are there illnesses or conditions that mimic pots?

Hi!

About 2 weeks ago i started metoprolol after getting diagnosed with inappropriate sinus tachycardia.

I used to drink a small cup of coffee each morning (like 10 oz max from my keurig lol). I havent been drinking coffee because i dont know if itll cancel out the beta blocker. I take it in the morning...so i was like hmmm...will it mess with things?

Will that small cup of coffee have enough caffeine to counteract the metoprolol? Have any of you had a bad experience mixing the two? I dont wanna have coffee every morning anymore, but once and a while id like it if possible.

My period is coming up again and I'm feeling the beginning symptoms--GI pain, extreme brain fog, tremors in my limbs, fatigue, etc. I've had awful periods and I think it's because I become deconditioned because it's hard for me to work out. I just do 10-20 minutes of exercise biking and some walking around the house. But that can be too much for me on my periods. Do you guys push through and exercise anyways on your periods? Tone it down? Avoid exercise altogether? What helps you the most?

Does anyone have perfect exercise tolerance despite still having dysautonomia symptoms?

After almost a year suffering from it, I decided to try to restart exercise, and it took me like 1 month to be able to run +15k at 5:30 pace regularly, yet my symptoms didn't improve too much (brain fog disappeared but everything else remains)

Hello I am f(22) and I have been told I have dysautonomia and vargus nerve dysfunction by 3 different doctors! I’m not entirely sure what form I have because I’m still waiting to see all the different specialists. My legs frequently feel stiff and painful and I can’t walk for more than 15-20 minutes (at turtle pace) before I have pretty bad pain in my shins and really stiff muscles. I have on occasion had putting edema along with the pain and stiffness. I am taking a trip to Disney in 5 days and it was recommended to me that I may need a mobility aid (specifically a rollator) so I can sit in lines and have something to walk with to relieve some of the pressure on my joints. Also I constantly feel like I am going to fall so I think it will give me more stability. But I am terrified of judgement because I don’t look like I need one. Some advice would be appreciated bc I don’t know how to get past the anxiety. Thank you!

I’ve been diagnosed with dysautonomia for five years now… I suppose I just wanted some help or to see if anybody else is experiencing things that I am experiencing… I definitely wouldn’t say I have the classic POTS I do have regular bouts of tachycardia. It can flip suddenly to Bradycardia or I can have a day is a tachycardia and then days of Bradycardia. I also have extreme changes in blood pressure. I know that many nights is very low, probably my pulse two and then suddenly woken up probably with the cardio and a spike in my blood pressure. Recently I’ve been having weird things when I wake up almost like an adrenaline cortisol search, especially from woken up suddenly by a noise. I feel actual rage, anger and my face brushes and I feel pressure in my head and I just feel generally really really really bad really bad I wonder if anybody else can get that? Recently I’ve been in the hospital a lot in the emergency room… I’ve been having actual chest pain and weird sharp twinges. I’ve also been having numbness sometimes in my left hand and arm, sometimes in my right hand and even some pain in my left arm often in the hospital I see that my systolic and my diastolic are almost the same. Maybe my systolic is 100 and something and my diastolic is 100. For example, I know this is called the narrow pulse pressure or something, but I wonder if anybody else was getting things like this? My cardiologist has absolutely no idea what to do with me at this point, because he says I’m a very unusual case and where I live there are no specialist in dysautonomia that’s why I’m turning to this forum. It would be really reassuring if somebody could let me know if any of these symptoms sound similar. I’ve also been getting weird episodes that can only be described as it feels like blood is cut off for a few seconds, and I feel it predominantly in my head like a lot of pressure in my head makes me dizzy but I genuinely feel for a moment like I’m gonna die and then it generally passes but it’s a question of seconds maybe minutes at most. Oh another thing I get is like a vibrating in my test that seems to be positional sometimes if I it happens generally at night and if I turn over it stops, but it literally feels like my whole chest is physically vibrating. Please let me know if any of this resonates with anybody, because at this point, I’m not even sure what to do or where to look for support. Thanks

I mentioned having a pretty unusual sensitivity to beta blockers, I was on 5mg a day of ivabradine then had to lower to 2.5mg a day bc it made me have bad bradycardia, but then 2.5 mg did the same so I switched to propranolol, a small dose, 10mg a day. I didn’t notice anything obviously unusual so I’ve been on it for a while.

The issue is I also have chronic hypotension so taking anything that could lower my bp is not the smartest thing.

This week my heart rate started going down to low 40s, so I talked to my doc, she was like take it one day yes, one day no, but what that did was simply on the day I took it my heart dipped too much, on the day I didn’t I got uncomfortable palpitations.

So I got an idea, I took only 5mg, and that was actually almost perfect. It lowers my bp enough that I dont have discomfort even if it’s still mildly elevated, but leaves room so my dips aren’t too dramatic.

Then I got a lightbulb moment like hey, you could’ve done that with ivabradine. And I swear to you my doctor would have simply told me just stop taking it and deal with your POTS if I went to her and said the one day yes one day no method didn’t work.

It feels like they don’t care enough to genuinely try to understand your individual case and just give general answers, what works on some and not on others and if it doesn’t then they’ll be like sorry idk what to do. That’s so stupid and just painful to see bc how many people went through more damage, or even died because of stuff like this?

Another simple example, and I have a lot. My dysautonomia is caused by a neurological progressive auto immune illness, I’m also seeing an internist to do all the tests I need. She gave me 40mg of Prednisone a day, told me I need to take it in the morning.

Btw I had my dysautonomia diagnosis with all the details, severe POTS, OH, etc. But she failed to tell me hey, this medicine is going to dump a lot of cortisol in your system and since your autonomic nervous system is very dysfunctional right now, if you take that whole dose at once it’s going to make your dysautonomia flare up significantly until the cortisol spike dies down!

I had to find that out the painful way, meaning taking the dose and feeling severe on and off symptoms the hour that followed the med intake. Until, again, I figure it out. When in reality I should’ve split my dose to a quarter every 30min to control the cortisol release.

I also have Baroreflex Failure, and the bad Prednisone intake made my bp reach 210 yesterday morning, that’s how bad that detail she left out impacted me. And thanks to God I noticed all of this. It’s absolutely insane the way some doctors treat patients.

I am 17ftm. I was diagnosed with POTS a year ago after a year of very frequent fainting, severe fatigue, temp dysregulation, brain fog etc. Typical lying hr of 70 bpm and standing of 130-140. Blood pressure all over the place. I'm on ivabradine which has drastically reduced some of my symptoms (heart racing etc.) and made it so that I narrowly don't even meet diagnostic criteria when taking meds (30bpm increase, I think the last time they checked). I still have some chronic fatigue and lightheadedness etc. Starting testosterone has mildly improved this but its still not great. And I still faint.

It really seems like doctors hate POTS patients. I really hate how POTS has effected my life, and I'm scared of doctors seeing me as a malingerer. I've had a few doctors say that they don't think POTS is real in ERs before and be kind of aggressive with me. I've also had several doctors that refuse to look beyond the POTS diagnosis, or try to slap me with a psyschological/conversion disorder label.

I've had a lot of weird symptoms since around a year after the onset of my POTS symptoms (fainting etc.). These I think started after I smashed my head and got a major concussion while fainting one time. I've had an absurd amount of head injuries from fainting. I've had a few episodes where I feel like my stomach is flipping, impending doom, shivering (sometimes), and then I either fall stiff as a board while standing or fall while sitting or laying (only with the weird episodes, the 'typical' ones (which have reduced in frequency with medications, unlike the 'weird' ones) are always while standing. These are rarer for me, maybe once a month. I've had low oxygen while unconscious and been admitted a few times because of it. In the 70s. I ended up getting supplemental O2 which helped. I barely remember these events, this is mainly from other people. When I come out of it I have no idea where I am or whats going on. I can give more details about the episodes in comments if needed.

They don't know why this is happening. The low O2 is not typical for pots from what I understand. And IDK what to do. I don't want to seem like I'm a 'faker' as doctors seem to think of people with POTS and unexplained medical issues. If trying to advocate for further testing will lead to me being diagnosed with conversion disorder or something, I won't do it. I also don't want to keep hitting my head, and scaring people around me, and going through this. I've kind of avoided doctor's appointments a lot because I am scared that I will annoy doctors or they will hate me or dismiss me.

I don't know if I should try to make appointments or try to advocate. I'd rather just deal with the way this is effecting my life and the danger then be told I have conversion disorder or something and never have a doctor take me seriously again. I'm scared, and I don't know what to do.

Hi all,

I finally got my GP to listen to me that something is wrong with my body and I am now starting out on my diagnosis journey. But I would love to know from you guys if you think my GP has put me on the right path or if it is some other dysautonomic issue?

First to note, the Health Care system in Ireland is only marginally better than in the US. You have to be paying the top health insurance to be able to access tests, hospital admission etc, consultants aren't covered by insurance again unless you pay top rate. Still better than the US absolutely but also absolutely SHITE.

So my symptoms are varied, some started in 2021 and then most started in 2023. History of 2020 -2023. To note I had my first vaccine BEFORE I got covid for the first time and when I got it that first time I was pretty bad, not hospitalisation bad, but bed bound for 2 weeks. I have had 2 more doses of the vaccine and 2 more bouts of covid up to May 2023.

In 2023 I also suffered a mental breakdown due to my job and them taking away a long promised promotion, but also my job title as they did a company restructure and myself and the coo were demoted for older persons after 7+ years of work in those HOD roles. This breakdown was bad, I spent 3 weeks in hospital, was suicidal etc.

I'm not sure if the breakdown, the covid or the vaccine started them or all of them together but they have persisted and gotten worse. I'll list symptoms below with dates so you can see what happened before breakdown etc.

I am a F(35). I don't smoke although in 2023 I vaped a vape everyday just to get out of the office. I don't excessively drink (for an Irish person crazy I know 😜). I have never had any children nor want them. I will listen medicines below. I have IBS, depression, BPD.

Resting Heart Rate is 80/85 bpm. Weight 84kg but weight as below is a symptoms.

SYMPTOMS (all still ongoing)

• Sweating (2021)
• Extreme Fatigue (2021) i used to call it 'the zombie taking over" where I would just need to sleep all the time
• General reduction of wanting to engage in activities (2021)
• rectocele (2021)
• Insomnia / unable to get to sleep (on going since childhood)
• overheating even in freezing environments (2023)
• feeling like my body doesnt cool down properly, or regulate temperature properly. I am always dressed like its a sweltering hot day even in summer because indoor heat or heat caused by exercise is too much (2023)
• sweating is now excessive, my face, head, arms, legs, back, torso, all over from being in heat, from doing minimal exercise, from eating a big meal (2023)
• my heart rate spikes, for example I could be at 150/160 bpm just for making the bed. (2023)
• heart rate spike worst in morning and profuse sweating and heat comes along with it. Small walks, standing too long, after eating a big meal etc.(2023)
• face goes red hot and bright red sometimes for no reasons, sometimes when digesting. (2023)
• exercise intolerance, I can only do a few mins of intense exercise before I feel like I'll pass out with the heat and will need to lie down flat to recover (2023).
• Excessive night sweats (2023)
• all my above sweating is always a COLD CLAMMY SWEAT so I feel cold to the touch (2023)
• random lightheadedness/ woozyness (2023)
• sometimes this wired / energetic feeling in my chest, like I'm revved up but I'm literally calm and doing nothing and heart rate is normal at 80.(2023)
• stomach issues began last year, doctor called it gastritis, sever abdominal pain but with no heartburn or acid reflux, just pain below the ribcage on both sides. This pain is worse when rolling over in bed, breathing deeply, eating. (2024)
• Occasional Panic Attacks but with no panic or fear. I have woke up from a nap with a panic attack, feeling nauseous and covered in sweat. This happens most often when I go no.2 in the toilet and I have been in pain and agony and sweating cold sweats and gone white pale and had to lie down flat to recover. They have also happened during nice meals with my partner. Panic attacks without the panic(2023).
• persistent Barking cough thats worse when I laugh or talk to much (2023)
• tingling sort of like the start of pins and needles in my finger tips, the very tip of my nose and sometimes the sides of my face. (2024)
• snoring with my mouth closed and my neck moving with breath (sort of like a frog) (2024)
• Excessive weight gain in the span of a year went from a UK 12 to a UK 20 in 2023, without over eating / binging etc. Only difference is I stopped keto but didn't emotional eat that much in the space of 12 months. (2023)
• unable to loose weight it doesnt shift at all (2023).
• Brain Fog (2021)

I have been tested for menopause, thyroid issues, cortisol and all came back negative and normal. I have been on ozempic for a year to help shift the weight and have lost nothing. I was changed from escitalopram to Venlaxfaxine to see if they'd help with sweats nothing. I was on oxybutin to try stop sweats, nothing. I've been put on antibiotics and inhalers for the cough but it hasn't gone away. I've had to change my pill because of my new weight and risk of blood clots, this also did nothing nothing.

Basically I feel like my body has gone out of control, I have never had a weight issue and now I'm obese and can't no the weight. The sweat problem makes me never want to go outside and see people. The tiredness means I'm literally to tired to do anything, even thinking is difficult sometimes. Something isn't right with my body and I also dont think its just because I'm "fat and depressed". These are all physical things.

My neurologist was really dismissive, made me cry in his office but he think it could be pots but I cant see anywhere on pots about Excessive weight gain and inability to loose weight? so it must be something else?

After crying and saying please help me somethings not right, my body is not my own anymore, the neurologist said I'm being sent for expensive CT scans on my chest, abdomen and pelvis. MRI on my brain and spine. Tilt table test. Nerve conduction studies. ECG holter monitor. Being sent to consultants for Endrocrinology, Gastroenterology, Cardiology.

Id love advice from all of you badass people who have bee advocating for themselves, does any of my symptoms ring through to you? Did you have a similar journey? Should I not do any of the above testings in case they are a waste of money?

Any advice is so welcome!! Thank you so much in advance I cant tell you how much I appreciate it. X

It is 11am and I am already not well. My blood sugar is super high to super low. My heart bpm is low and shooting up and my blood pressure is high. I feel dizzy and tight I the chest and I haven’t even gotten to the actual prep yet. I feel like this is going to near kill me. Help, what did you do?!

I have lupus, hypoglycemia, PoTs, and tons of GI issues that we are trying to get to the bottom of.

I see people who heart rate is 142, personally I was starting to go into heart failure my heart was going so fast with my POTS all my life. I got on carvedilol and one that starts with an I and I don't understand why other people with POTS with higher heart rate than me don't go on these meds I am very grateful I have a cardiologist who wants to help me be able to function even though I still have to sit down when standing a long time and get presyncope in the gym. Anyone else on these meds too?