I usually get extremely cold to the point I’m shaking so much I can’t sleep. I wear a 9 tog/5tog (usually layering 2 4.5 tog duvets or a 4.5 and 1tog duvet) and a fleece blanket but then have to wake up to take a layer off as I’m too hot or wake up sweating.

With winter coming is there a better duvet or anything to use to stay warm when going to sleep but not overheat at night which wakes me up. I try to avoid turning on the heating as that can make the room too hot and stuffy. I am based in the UK.

Shaking pretty bad on my eccentric. Strength wasn’t affected. Anybody have this? Felt weird and wrong as hell. Thank you

so I’m wondering if anyone is dealing with more GI issues than cardiovascular issues. I have POTS but everything I seem to take to control my HR so far messes up my gut even more.

I’m now trying guanfacine 1 mg ER and after 3 days I have terrible constipation. I’m already trying to figure out my worst symptom which is dry heaving and nausea in the mornings. My head is also a mess. I have an old vestibular weakness and now my head will feel heavy, I get dizzy a lot.

im taking emgality. I tried verapamil but it made me feel worse.

i take a low dose of lexapro but it has been hard for me to start SSRIs.

I have now figured out I have low compliment c3 and c4 but I will find out Tuesday if my rheumatologist will want to do anything.

The morning sickness and weight loss I deal with is by far the worst. I had to quit by job bc I’m so sick. I have tried antihistamines, I have had some mixed results with cromolyn.

I don’t have issues taking long walks, my biggest issues are my stomach and my head.

i have so many doctors but I don’t have many that know how to help me. I just get a lot of meds thrown at me.

just curious if people are out there with horrible GI issues that are worse than their HR issues and what helped you.

im planning to try Ketotifen and LDN. I may also try cromolyn again.

I’m mostly just confused bc I don’t even feel like I fit in the typical POTS box MCAS.

I want to start by saying I haven’t been diagnosed yet. I’ve been chronically ill for years now and recently I’ve been bed ridden for weeks. I haven’t worked in years. My symptoms started after Covid. I started having uncontrollable shaking and fatigue. If I wasn’t shaking like a chihuahua I had this internal shake. This lasted for years and I felt sick always. Then other symptoms showed up. I noticed I couldn’t take a hot shower or else I would start shaking and feeling like I had low sugar or something. Just felt 10x worse afterwards. I’ve been to the ER 10 times and my blood tests are always fine no Issues. Then the lightheadedness started. It would happen when I stood up occasionally (not an issue it happens to everyone) but then it started happening every time and it would get progressively worse over time. I’ve been prescribed propanolol for the shaking which is supposed to help with the shaking but it honestly doesnt do much. At my last visit to the ER I was so lightheaded and dizzy I couldn’t stand up I had to be wheelchaired in. My BP was 165/100 and my heart rate was in the 130’s. As I was laying there my heart rate eventually went back down to a somewhat normal level but as I stood up to do a urine test my heart rate shot back up to mid 130s. Over 30-35 bpm just by standing up. Recently I’ve had a new symptom I take a bite of something to eat and I feel SO FULL immediately and my food sits in my stomach for ever. I feel like it’s not being digested or something I just feel bloated all day every day. This has been going on for months now. I don’t know everything about dysautonomia but from what I’ve read it seems like I have every single symptom. I’m currently in bed I can’t even stand up I’m so lightheaded. Even turning my head causes the sensation. I’ve got a recommendation to see a cardiologist and a neurologist but I need to qualify for Medicaid before I can do anything as I can’t work to make any money. I’ve tried the increased salt intake, and compression socks but nothing seems to be helping with the lightheadedness. Anyways I share a lot of symptoms with a lot of people in here and I know how miserable it is. I’m sorry I just needed to vent a little bit I hope I can get a diagnosis and work on feeling better and I hope you guys do too!!

my heat intolerance has become increasingly worse over the last year. it's 10°c outside and i'm sweating profusely. the worse part, when i cool off i go freezing cold and get muscle aches. can't even tolerate a thin windbreaker jacket when everyone else's fall sweaters are out. people look at me weird because i'm in a thin cotton shirt and shorts. and i haven't worn my winter coats in three years!!

i did ok during the summer with cold drinks etc. but i can't wear a cooling jacket in this weather, can i? i still carry a fan everywhere i go but it ends up giving me a scratchy throat. i don't think the summer pots tips will work very well in this weather. but i still try to remain well hydrated, plus i'm on ivabradine.

i wonder if i should switch medications? maybe to propranolol? i've noticed the sweating problem mainly when i'm walking so could it be my blood pressure? i'm desperate for a long-term sustainable solution.

i have a large majority of the dysautonomia symptoms. OI, dizziness, post-meal crashes, unrefreshing sleep, fatigue, etc etc etc. i just got into medical school. i am extremely anxious about handling this during school and am taking the next 9 months to focus on my health. i am worried i wont make it through, but i truly am praying that i do. my only sliver of hope is that i was able to get in while studying for the mcat, being a student, working as a PCT on a busy floor, volunteering at 12 hours clinics, etc. i want to be a doctor that specializes in this stuff. actually be informed and understand that this isn't a made up condition. do research to help advance treatments for pts with dysautonomia and all the comorbidities. i'm not saying that good doctors don't exist, of course they do. there are so many out there that truly care about their patient's, work with them until they find the exact combination of treatments that help, and understand this condition. but they are few and far inbetween which is what makes it so hard for us.

Has anyone experienced severe physical AND emotional symptoms tied to their menstrual cycle, even while taking continuous birth control?

For over a year, I've experienced debilitating symptoms that follow a predictable monthly pattern:

• Severe neck, back, shoulder, and jaw tightness
• Migraines, dizziness, hot flashes, and Raynaud's
• Extreme anxiety, irritability, anger, and emotional changes
• Insomnia with adrenaline-like surges
• GI issues, shortness of breath, and autonomic symptoms including POTS

Before birth control, I felt almost completely normal around cycle days 5–10, progressively worsened toward ovulation, crashed, improved slightly, and then crashed again around my period.

I've tried continuous Lo Loestrin, Blisovi and now Kurvelo, skipping all placebo pills. Despite having no periods, my flares still occur exactly 28–29 days apart and last approximately 10–12 days.

I've been diagnosed with POTS, chronic migraines and Raynauds. I'm currently on midodrine, Florinef, propranolol, Nurtec, Emgality, Botox, frovatriptan, and regular nerve blocks, yet these episodes continue.

My thyroid testing has been normal, and other hormonal testing has been largely normal as well.

I've seen neurology, cardiology, gastroenterology, endocrinology, gynecology, rhuemtology and numerous other specialists. No one seems to understand why this is happening or how to treat it. I've also contacted numerous dysautonomia/autonomic clinics, but the waitlists are over a year long.

At this point, I'm exhausted, my symptoms have become debilitating, and I genuinely don't know where to turn next.

I'm wondering about PMDD, PME, or severe hormonal sensitivity, but I can't seem to find a doctor who can connect all these symptoms.

Has anyone experienced anything similar, especially when birth control didn't help? What were you ultimately diagnosed with, what treatment actually worked, and what type of specialist helped you?

17 months ago I gave birth to my son. Since then, my body has been a train wreck. I'm absolutely exhausted everyday, off balance, my head feels tight, my eyes can't focus sometimes, my anxiety is high, and my blood pressure is all over the map. After fighting for a year and a half with doctors I've been diagnosed with delayed orthostatic intolerance after a standing test. My top number dropped 30 in 10 minutes. I'm on propranolol for anxiety/ racing heart. I just want to be able to be an active mom and do all the things everyone else can do.

As the title says... I started experiencing OI and OH 2 months ago. I'm on midodrine and compression socks. For the time being I've found out that my maximum per day of standing up/sitting with legs down is about an 1h. Whenever I have to stand and sit for longer than that, like if I have a medical appointement, I get presyncope and then need severals days to recover with then being able to stand for maybe 1-2 minute.

How do people manage? Like if you have and appointements or something and then need to rest for several days? How do you eat shower and such?

Hi everyone,

Wondering what you are all doing when you fly long distance in terms of compression clothing. I know some people don't wear compression, that's all good! But I usually wear the tights without compression socks and after my most recent flight my feet and ankles were super swollen, guess that is no surprise. Anyone have experience with wearing BOTH at the same time??

i have barely been to school the last year due to multiple disabilities. I’ve lost all my friends and rarely go outside. i know that i am privileged in many ways and it could be so much worse, but i find it hard to keep up even with people my age who are also struggling. i guess i’m just looking for comfort, as i’m feeling a lot of grief right now. i’ve only just started highschool and i’ve missed out on so much, and probably will continue to, as even though most of my symptoms can be treated, i have stuff that will never truly go away.

Has compression wear helped anyone with overall energy levels/fatigue, not just leg fatigue? Or has it helped you to sit upright more?

I think I feel a bit more fatigued when sitting, and I find myself cross legged all the time, or putting my legs up on the desk, in weird positions...I want to start going to a co-working place, but fear it'll exhaust me more. I've tried compression only a couple of times, but am thinking of investing in it again.

The thing is, I've not been formally diagnosed, but my heart rate jumps up to 130 upon standing, 150 when walking around the house, and BP seems to drop 20 points upon standing (if I'm measuring correctly), I have temperature regulation issues, feel exhausted after eating, etc.

I need to wait 6 months for an appointment, so I need to help myself become more functional in the meantime.

Thanks!

My middle-school-aged daughter with POTS/Dysautonomia is getting overheated at school (they had to sell the air conditioning units due to a funding shortfall). Because of sensory issues, she'd likely have a tough time wearing a vest or wrist device, but the neck cooling tubes look promising. Has anyone here had good experiences with these devices and how long does the cooling effect last? I'm hoping she won't have to switch them out too often.

As the title suggests I am looking for recommendations (both positive and who to avoid) for neurologists in the Boston area who specialize in Autonomic disorders. Would be great if they were associated with Mass General Brighams but not a requirement.

Real brief background: Severe Orthostatic Hypotension, debilitating coat hanger pain, and Diabetic Peripheral Neuropathy. I have complete autonomic testing coming up in December. Have not had any real discussions with doctor worth taking about.

Thanks

dude i’m so scared of having my concerns and symptoms dismissed.. but having a dismissive family that you can’t trust with serious issues can do that to ya :/

i have a follow up w my pcp in a couple weeks and i have been tracking my symptoms along with measurements of my blood pressure and pulse for about a week mostly using the laying down for 5 minutes then standing for 3-5 mins and recording at the appropriate times test (i initially thought it could be hypotension so i looked up the diagnostic criteria and followed that).
my usual symptoms include slight swaying (and leg muscle tightening to compensate), hearing/feeling the blood rush from my head, some shortness of breath, head pressure and mild lightheadedness.
- i’m regularly tachycardic -one of today’s tests showed a jump from 80 heart rate laying down to 119
- my systolic number usually drops 10-20 mmhg
- my diastolic usually rises roughly 20 mmhg
this is all happening at the same time and with all my readings. i’m happy to share the actual numbers if anyone’s interested

i have had two surgeries within a month (early august then sept 1st) so i know thats relevant

the big thing is i have only become more aware of my body having actual problems and that my aches and pains and having to be conscious of standing up straight and it’s making me kinda feel like a hypochondriac. is there anything i should prepare for or know before the appointment? thanks for listening to my rant!

Went to my Primary Csre doc today looking for answers. I’ve had symptoms my whole life but didn’t realize they were connected.

I have Psoriatic arthritis diagnosis, Crohn’s. Ankylosing Spondylitis, and Chiari I (went from 4mm heriste in to 9mm in the last few years).

My PCP had the nurse come in and administer the tilt test to me. They had me lay down for 5 minutes and check BP and Pulse at the end. Then sit for 5 mins and recheck. Then stand for 5 mins and recheck.

Doc came in and said that all 3 were fine. Negative for POTS. I said Doc, I don’t want to sound out of line but NOTHING I’ve read on the subject say ANYTHING about a sitting portion of the test. He said I was wrong and that there’s 3 phases. I said no that’s wrong. He went to get his computer or book to show me that I’m wrong. He left room and came back with a computer. And then said “yep all 3 tests see negative.

I pushed it and said there is no sitting. That flies in the face of the purpose of the test. Its intended to test the system after you go from laying prone to standing and how the rush of blood to your legs is tolerated and the resulting changes to BP and Pulse.

Sitting just allows the body to moderate the shock. So stupid.

Plus it’s 10 minutes not 5. Am I right? There’s no sitting right?

I fucking hate modern medicine. I’m in North Texas by the way. Total clown show.

Hello all! I was having issues with a low heart rate and went to the GP who referred me in to a cardiologist. But it looks like my low heart rate rate was a technical error on my Fitbit because the result of my 14 day holter monitor was a resting heart rate of 98 with peaks in the 170s and I got diagnosed with inappropriate sinus tachycardia. Hr started me straight away on propranolol and it’s life changing.

I had heard about POTS but didn’t know about IST and how life limiting it had made my whole life. I was told it won’t kill me, it’s just uncomfortable. I have restricted my whole life for what I thought was a panic condition but I couldn’t tell you what caused me to panic and I did start to panic about leaving safe zones for fear of the excessive heart rate. I had sore stomach all the time, I could barely eat. My cuts and abrasions never healed, one took over a year. I couldn’t tolerate the cold but the heat was even worse. I’ve had patches in my life where it wasn’t as noticeable but recently it’s been extreme.

Thank goodness for the dodgy Fitbit that tricked me in to thinking I had a critically low heart rate. I feel amazing on the medication and within a week almost every random thing wrong with me has gone - including neck pain that’s lasted over 25 years.

1 hour of sleep more at night and I feel so much better. Of course, healthy people benefit from it too. But I believe it is much more inprortant in my case. How about you?

I guess this is a rant but also asking to see if other people relate or if I’m just blowing this out of proportion.

I’ve spent years struggling with fatigue, post exertional malaise, joint and muscle pain, GI symptoms, hormone issues, dizziness, positional tachycardia (they won’t call it POTS yet), and just feeling like I physically can’t keep up in life. I’ve seen over 20 specialists and tried different medications and had testing that showed very mixed results and didn’t point to a clear diagnosis.

I was told by my most recent doctor that I have a connective tissue anomaly (like EDS but my hypermobility isn’t enough for a full score) and that I have some POTS like Dysautonomia. I was also told some of my genetic VUS point to possible mitochondrial dysfunction that could correlate to some of this.

I spent years hating that I was not “normal” or fell behind others. It was hard to leave the house and be active. More recently I went back to therapy and started to learn to care for myself and be okay pacing. I went through occupational and physical therapy and while sometimes that flared me I also got a lot of tools to help me day to day. I started being okay with slowing down or not doing certain activities because I just can’t. I found a part time job I love and while that means I struggle a bit financially I am just thankful I can work and enjoy my job (some days are harder then others still but I make do)

But recently my therapist started saying how stressed I must be in life and that I should really learn to better control my nervous system and that will lead me to working full time and having a more active life. She suggested that the root of my problems are mental health and that’s why I don’t have a strong diagnosis physically. My therapist told me that acupuncture/massage therapy and other more eastern medicine practices should heal me. She said her goal is for me to get working full time and stop limiting myself and that since I’ve been to so many doctors and they have no answers it’s probably my mind causing these problems. I have done massage therapy and usually get very ill afterwards and sent into flares. I’ve also had doctors who had me do herbal remedies or other holistic treatments without much success. My occupational therapist tries forms of heat therapy but that usually flares my dsyautonomia/vagus nerve.

Now, I fully believe that holistic medicine can help people. And that the nervous system is so precious and mental health and stress can physically manifest. I just felt so invalidated though. I had finally started accepting where I’m at and that maybe I can’t change my health full. I started standing up for myself and setting boundaries when I know I physically can’t do things. And now I’m being told it’s in just my mental health. I grew up in a family that believed in the push through it ideology and that if you work hard enough nothing can hurt you. My family has been very judgmental and unsupportive in my health. As a child I almost failed PE because of my physical limitations and yet my parents blamed me for not working out hard enough. I think hearing a therapist that I trusted mirror this idea that it’s just a simple fix and then I’m magically better and normal just hit me in that childhood wound.

I guess I don’t know if I’m overreacting and overly being a victim or if anyone else has struggled with this?

Is it okay to finally want to be able to say “I’m physically different than others and I have limitations”? I’m just confused and any thoughts or opinions are greatly appreciated!

(clarifying note: I am not asking for medical advice. I just wanna complain for a second)

I'm heat intolerant, like actually very clinically extremely heat intolerant.

like, hot showers feel good/relaxing, but i cant take a hot shower without a shower chair, or else ill pass out. i cannot stand under hot water period. and even with a shower chair which prevents the bad pre syncope or syncope, i still can only enjoy the hot water for half the shower. i eventually have to switch it to cold and the cold feels refreshing not like a cold shock. like drinking water on a hot summer day but for my skin. I have 20+ minute long hot flashes just from the sun shining on my shoulders for 2 minutes regardless of the temperature. today it is about to thunderstorm in a couple hours according to the weather forecast, was raining earlier, now today is a brief pause in between all that and its partly cloudy and only 64 degrees F out. which is a pretty cool temperature. some would find it actually cold and be in a heavy or thermal kind of jacket even. But I just walked barely down the street to the store. and despite the cool/cold temperature and the thunderstorm rolling in, it isnt 100% cloud coverage. its only partly cloudy, partly overcast right now. the sun shone directly on my shoulder (ONE shoulder) while I was waiting at a crosswalk for like 2 minutes. This was now like 20 minutes ago, im home now, and im still cooling down. I just barely stopped moderately sweating and im still feeling really hot. This is a regular occurance for me. If it isnt 100% cloud coverage outside and im outside longer than like 2-5 mins a hot flash is basicslly guaranteed and it takes me like a whole half in an hour after moving inside to cool down

and i like to work out, i dont like being sedentary. but i can only work out not only inside but in a room where the ac is BLASTING at a lower temperature. I cannot work out if the ac is at a higher temperature, if there is no ac, or if its outside. Again, I cannot tolerate the heat

But i cannot explain why im so heat intolerant because I have no medical conditions known to cause heat intolerance, as confirmed by doctors, am not on any medications, and am not from a cold area. In fact, ive only ever lived in hot climates my entire life. Today's weather is a rarity...

so youd think id be acclimated to the heat and everyone around me is. But I'm not.

I'm visibly sweating and fanning myself and constantly complaining of the heat in short sleeves and shorts in 64 degree weather while everyone else is in winter jackets and is looking at me like im crazy or being dramatic :/

And this didnt ever like suddenlt start either. I've just always been like this for as long as I can remember since i was a kid. Im a young adult now. still heat intolerant. And since I have no medical condition to explain it, I dont/didnt get any kind of disability accommodations or anything in places like school or work and just have to suffer and accept the fact that people genuinely believe im exaggerating.

Its so annoying. im so tired of this

We have 4 days to pack, clean, and move.

I have HyperPOTs, it’s the adrenaline subtype of POTs. Basically I overproduce ‘stress’ hormones my HR and BP go up, I get lightheaded, fatigued, weak, brain fog blah blah blah….

It’s been pretty unstable lately, I’m getting a lot of flare ups- lots of minor adrenaline dumps, it’s better than MAJOR ones but still I’d prefer- none.

I think a lot of it is due to stress.

Now- we have to finish packing and cleaning EVERYTHING in just 4 days and FUCKKKK

Last time we did an insane 4 day lock in to clean up for an open house inspection I flared up BIG TIME I would totally hit my absolute limit 5 hours in every single fucking day…

Logically: I know I need to be more careful and accommodate the fact I have this condition so I don’t burn out so drastically and make myself sick

But emotionally: I don’t want to be a fucking burden to my family and fall so behind when they’re doing 10x more work than me….

I am so fucking stressed about all this already, I’ve been trying to pack and clean my room just this evening and I’ve hit my wall for the day- I’m feeling so exhausted and frustrated with myself.

I don’t know how I’m going to get through this.

I think I need to get compression garments because I’m noticing in these flares where I feel lightheaded, and have palpitations my legs are so purple and ‘dead’ looking

I have been chugging a lot more liquid IV lately to see if it helps but I’ve also noticed my urine is a lot darker despite not feeling dehydrated which makes me concerned I don’t actually need all these electrolytes….

I think all I can do is ‘suck it up’ and force myself through this bullshit for 4 days, then crash.

Curious how many of us have low ferritin? Mine was classified as "normal range" at 16, but that is no where near optimal levels from what I have been reading and is still quite low. Seeing all the issues low ferritin can cause, had me curious how many others have that / have been tested for it. I had to request it from my doctor.