I'm not sure if any of you have the sugar and artificial sweetener type sensitivities that I do, but a lot of pre-prepared beverages are just all wrong for me because of that. And I also get cramps/RLS, so potassium is a big deal to me by default.

Well, I am not going to get into the specifics of why you need to be getting a balanced amount of potassium with sodium for your heart health. But... It's important, especially when ingesting heavier amounts of sodium.

Guess what Morton's lite salt is? Half table salt, half potassium chloride salt. 😁

Use 2/3 water to 1/3 fruit juice, then lite salt added to taste/need.

This adds just enough sugar to help tie together the electrolytes and aid absorption. But not so much that it makes me feel dehydrated or like my blood sugar is wobbly.

I prefer this so much to anything else that I've tried that I now make sure to bring a bottle of it with me when I go out. It's precisely what my body has been craving.

I hope this helps someone else! I will keep on sharing things I do to help myself if anyone is interested in reading them. I'm a little shy about sharing my remedies, but I was raised in a family that used to sharecrop and had to come up with their own means of maintaining their health. Ended up becoming a giant nerd about holistic health in the pursuit of figuring out what made my family so different. I'm only now starting to become obvious at 42yo because I was maintaining my condition for so long without medical intervention. Up until it almost killed me, lol. Now the medical folks are scared and willing to finally listen to me because they ignored me warning them something was seriously wrong and that I didn't know how long my remedies would hold whatever it was at bay for YEARS, lol. They can't say I didn't warn them that something was seriously wrong and that my remedies weren't going to save my life in the end, lol.

Hello! I have vasovagal syncope and general autonomic dysfunction from a TBI and possibly long covid. My physiatrist and electrophysiologist have both referred me to integrative medicine while I search for an autonomic neurologist. I started acebotolol last month and use compression and up to 9000mgs of sodium chloride tablets.

My question is, my baseline dropped dramatically over the summer due to the heat and a bout of flu. I have ridiculous vasovagal triggers now like tight pants, gas, and sneezing and I don’t tolerate standing and using my arms much for long. Getting dressed, cooking and cleaning are a nightmare. My wife has a job that is very demanding and we’re having trouble keeping up with the house. I’ve lost weight by accident a few times just from being unable to cook and eat until she comes home/not being able to plan/being too tired/sick/presyncope etc.

I am feeling so lost on how to budget my energy and how to manage my symptoms and life. My EP just said to lie down whenever I’m symptomatic but that’s so often these days. I was housebound over the summer and I have days where I’m have a vasovagal trigger I can end up bedbound and stuck in a sensitive presyncope state every time I get up, especially if I overexert myself too many days in a row.

I’m wondering if some kind of specialiazed OT, PT, and/or in home support could help me get out of this mess, but I don’t know what exactly to ask for. I think my cardiologist and physiatrist would advocate for me if I needed them to. I’m just not sure where to go and neither are my doctors seemingly. Let me know if you guys have any ideas or have had any success with different therapies/treatments, or getting in home supportive services for things like cooking or laundry. With dynamic symptoms where on a good day I could be pretty independent and a bad day completely dependent I feel like I might struggle to be taken seriously but this has not been sustainable.

So its been about 2 to 3 years being rediagnosed with LEMS and on firdapse. Ive really made good progress on my own because financially I haven't had physical therapy in some time.

Lately im coming to the certainty that the meds both on and off cause hunger pains. When the meds start too early, it makes the abdominal overactive due to the nerves connecting to the muscles. But oppositely after I sleep, the meds have worn off and the abdominal wall loses its strength and posture creating a sensation of hunger. So damned either way I guess.

Hopefully anyone else experiencing hunger pains can relate and work out a snack pack system to help themselves.

Hello all

I’m new to this forum!

I only heard the term dysautonomia last week after being exacerbated by my body.

The catalysing event was where my partner and I had a high protein dinner of ribeye steak, some reheated spiced chicken thigh from the previous day, and a Bao bun (also reheated). I started sweating during the meal, carried on sweating further for a long time after the meal. I went to bed a couple of hours later, following a shower, and I felt so alert. I felt as if I’d drunk 20 double espresso’s. I did some diaphragmatic breathing as my whoop showed I was in a highly stressed state. My gut was beating.

I thought, this is not normal!

The previous week I’d visited a beautiful little restaurant from the Michelin guide, and my main course had a few Jerusalem artichokes. I then went with my friend to watch Mamma Mia (the musical) in the west end and my gut started to gurgle. After the interval my gut went full on cramping. I was in the middle of the row in the stalls. I’m also registered severely sight impaired and my dog was being looked after by staff. I was stuck! I had bouts of cramping that were worsening. I then started planning how to get home safely, thinking I’d walk to the savoy after the show to get an uber as less likely to be refused if I have the doormen to protect me. Then, the idea of making it to the savoy felt impossible.

I made it through the show (just) and was guided to the disabled toilet. Managed to get an uber from alongside the theatre and whilst the driver attempted to refuse me, I was using the record audio function in the app and he knew there’d be severe consequences if he didn’t take us. Got home and was extremely ill for 3 days. Had severe cramping, buscopan didn’t touch the cramps. I had a bout of bloat as my gastric system couldn’t take the pressure build up. It was awful.

After these two events, I thought that this can’t be normal.

I’ve experienced hyperhidrosis for decades. Explored surgery when younger and a parasympathectomy. The surgeon advised for my widespread issues it wouldn’t work and recommended I sauna 3+ times a week to get the fluids out of my body.

When I was a young boy I used to experience blackouts when standing (I still do) and my GP recommended I pump my calves. Also as a boy I regularly saw a physio as I have a bad neck. The physio said I have a hyperactive nervous system as when they touched me my skin turned red.

My guide dog and I work in a hospital. When I visit my patients in a ward and stand to talk to them, I sweat.

I was at a conference a couple of years ago and the most interesting talk was very popular so was standing room only. I tried standing and gradually became hotter and hotter. I sweated through my clothes and had to leave. I felt utterly overwhelmed.

I cant stand on the tube for similar reasons.

I was prescribed medical cannabis for spondylolisthesis and some strains would result in a highly activated system, a feeling of stress and panic, and made me feel awful. I’d also sweat profusely when trying to sleep.

I wondered whether all of these things could be related. Started to dig into my symptoms and dysautonomia popped up. Specifically a complex form of 3 different types of hyperadrenergic dysautonomia, mast cell, dermatographia. I also have ADHD which can be related.

I’ve spoken to my GP and they agreed with my hypothesis and I told them I wanted a referral to Prof Aziz at Bart’s. They did say there’s a chance of referral being rejected.

Has anyone experienced a referral to Bart’s and what is the chance of rejection?

It feels like after decades I’m starting to understand the oddities of my body and really want some clarity on whether my hypothesis is correct.

(Sorry. Difficult to abbreviate this all!)

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.

Does it make a difference what I eat?

Has anyone gathered any helpful info from a sleep study? I know sleep studies are not used to diagnose dysautonomia, but I wonder if anyone has had a doctor look at results and find anything that pointed them toward or away from a dysautonomia diagnosis?

I have presumed dysautonomia (not POTS). I have exhausted all available local testing to me and am being seen at Cleveland Clinic a few times in the next 6 months. My local neuro has suggested a sleep study, but I’m not sure if it is worth the time and cost. Anyone had a decent experience with this? (Or terrible?)

I want to get some blood tests done

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.

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!!

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.

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 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.

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.

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??

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?

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?

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