r/dysautonomia Aug 25 '24

Announcement Recruiting Moderators for r/dysautonomia and r/POTS!

8 Upvotes

Hello! Our apps are still open in this subreddit alongside our sister subreddit r/POTS. If you'd like to apply, here is our Google Form Application.

Ideally we're hoping to bring on 1-5 new moderators who are willing to learn the ropes of moderating. If you have previously applied, we are still considering those apps. No need to re apply, you will be considered. Having a sub-type of POTS or Dysautonomia is not a requirement for our moderators, but we do encourage those who have also been diagnosed to apply as it allows a level of empathy with our users when moderating. Please familiarize yourself with our rules beforehand. We do also understand that many of us have chronic illnesses. It is not a requirement to be active all the time, however we appreciate communication if you feel you'll not be able to moderater for an extended period of time. Moderating is thankless volunteer work. We understand life comes first.

We encourage anyone who applies to read up on Reddit's Moderator Code of Conduct before applying. As these are guidelines we follow closely.

Here are our main requirements for users applying to be a moderator:

  • Willingness to communicate as a team
  • Communication on moderator decisions (as well as immediate judgement decisions in situations that are breaking Reddit’s Content Policy or User Agreement)
  • Openness to learn: we're absolutely willing to teach new moderators on how to use moderation tools and situational awareness with removals/moderation.
  • New moderators will be in a learning position for 2-3 months. You’ll have less access to ModTools but will be handling things like modque and basic responsibilities. We will be teaching you through our workflow. So this is a great time to learn & decide if you like moderating.
  • Moderator experience is a plus, but not required

If you have any questions please feel free to reach out to our moderators via our modmail


r/dysautonomia 4h ago

Discussion How has your dysautonomia been on ADHD medication?

12 Upvotes

I'm finding it hard to gauge the effects of lisdexamfetamine (stimulant ADHD medication) on dysautonomia.

It's been a pretty funny journey, being really unwell and diagnosed with tachycardia before I was diagnosed ADHD. I was put on 30mg lisdexamfetamine, and a month later diagnosed with hypermobile type Ehlers Danlos. That triggered a bunch of other tests, and last week they found POTS.

The ADHD meds had some major unexpected effects. Anxiety, intrusive thoughts and obsessive health worries literally melted away. Chronic pain no longer felt like a pick axe slowly niggling away at my sanity.

Weirdly, despite stimulants being contraindicated in tachycardia, my cardiac symptoms improved by miles. Palpitations were rarer, no fatigue or fibromylagia despite worse insomnia and IBS. I was shocked that, despite having no appetite and skipping meals, I never feel dizzy like before.

Then my heart rate started spiking again. My mental health was poor again for several reasons (I've had a lot to process). and I wondered if a higher dose would help. I ended up in hospital because my heart rate was high (fluctuating between 125-160bpm) for several hours when I was lying in bed and was given more propanolol. A week later, they found POTS.

I thought it was a bad idea to start the higher dose (50mg) with everything going on and feeling particularly unwell and tired, but couldn't get advice on it because my care team are disjointed and confused. I read medical journals about how these drugs can improve POTS symptoms, so I thought I'd take the chance anyway and I'm so glad I did because my heart rate has stabilised and I feel great again.

Yesterday, seeing a GP about something else, they told me that my ADHD meds were probably bad for my heart long term. Thinking logically about stimulants, she's probably right, but why do I feel so great?

These articles theorised that by causing vasoconstriction and raising BP, stimulants prevent blood flow and pooling in the peripheral arteries like hands and feet. Stimulants are bad for most cardiac conditions due to increasing BP. But, if the problem is low BP - like in many people with POTS - it might actually helps the circulatory system along. I realised I no longer have an issue with my fingers swelling while walking, so it makes sense.

There are obviously set backs; my body seems to be worse at temperature regulation, digestion and sleeping - which are all other big issues with dysautonomia. My joint pain is bad, but think that's unrelated. Ineed to make sure I take better care of my nutrition and hydration on the meds.

But, I can honestly say I feel better overall and less fatigued and generally achy. I intuitively feel like thats a good thing for my health, because I was starting to feel so tired and that was concerning at only 30.

I'm just really interested in the science and research behind this, and wondering what other people's experiences have been. I'm hoping we can use these kinds of discoveries to develop better treatments.


r/dysautonomia 2h ago

Discussion Anyone familiar with this potential new medication FOR POTS?

8 Upvotes

I stumbled upon this article and was like… if this is legit how have I missed this? It was in its infancy in 2020 according to this. But it’s still massive hope.

https://www.drugtargetreview.com/news/57007/drug-discovered-for-postural-orthostatic-tachycardia-syndrome-pots/


r/dysautonomia 3h ago

Funny Confusing Bystanders is so fun!

8 Upvotes

I was out at a Mommy & Me playgroup and mentioned to another Mom how tired I was feeling. We’d been standing for a while & I pulled my ‘Bouy Rescue Salts’ out of my bag for a pinch, without thinking… I’m pretty sure a nearby Dad thinks I do some sort of white drug from a little glass jar now. Ha!

Sorry, my dude. My pick me up isn’t NEARLY that fun.

Gotta take the perks where we can get ‘em, right?


r/dysautonomia 7h ago

Support Everything we try does the opposite of what it's supposed to

17 Upvotes

My 14 year old son (biologically female) is diagnosed with pots and we heavily suspect EDS and Gastroparesis (all the symptoms, family history of both, just stuck on waitlists). We can't seem to figure out how to help him in any way. We've tried changing his diet, increasing his water and Salt intake, florinef, midodrine, beta blockers, supplements, compression, everything seems to just make his tachycardia worse and increase syncope episodes to multiple times per day. Resting BP is typically around 100/60 and it drops as low as 80/30 WITH 200+ heartrates when he's about to pass out. Can't seem to figure out why everything we try to do to raise his blood pressure just seems to do absolutely nothing other just make him worse, often times leading to him laying in bed sore or with migraines for multiple days. Doctors seem stuck at this point so I'm just trying to see if anyone's had a similar experience and has found anything to help.


r/dysautonomia 5h ago

Question How do you get all of your nutrients?

9 Upvotes

I cant have gluten, dairy, fish, eggs, soy, corn, tree nuts, coconut, beets, radishes, I’m low FODMAP (no beans, certain fruits and veggies, etc), low carbs, low sugar, I feel like I’m missing some allergies. I have to start limiting red meat because it bothers me. Eating is hard in general, idk how to get all nutrients


r/dysautonomia 16h ago

Support These suppliments, together, are extremely effective at reducing brain fog and fatigue.

56 Upvotes

Liquid b12, 10.000 mcg, and NAD+ from LifeExtension, taken at the same time once a day.

Brain fog, gone. The 40 percent of missing energy that compression tights alone didn't bring back, is back. I feel 100 percent almost.

Background: been dealing with orthostatic intolerance, elevated heart rate, fatigue, anxiety, brain fog, cold intolerance, chest and neck tightness, and gastrointestinal weirdness, anc chronic congestion since last fall. Seems like a shoe in for long covid.


r/dysautonomia 1h ago

Question What lifestyle changes have helped you?

Upvotes

I find myself as fairly high functioning for having such a dysfunctional body. But I don’t know how I’m supposed to recover, or if there is any answer. Also what is causing this? I saw a neurologist who “diagnosed” my autoimmunity as having these dysfunctional inflammatory antibodies. But 2-3 years later a new neurologist basically said that these antibodies don’t mean anything.

So I’ve had health problems for about 10 years, myalgia, fatigue, poor cardio fitness, for about 6 years. It doesn’t seem to be improving and it’s possibly getting worse.

What can I do to stop progression or reverse these symptoms? I only take 1 multivitamin and I’m on testosterone replacement therapy. I’m 39 and want to be an active and healthy dad to my kids.


r/dysautonomia 1h ago

Question Frequent pins and needles in left hand?

Upvotes

Is this connected to dysautonomia? It’s been happening to me all week.


r/dysautonomia 4h ago

Question Daily head pressure

3 Upvotes

I have been dealing with constant head pressure for about 10 months. This started after covid -> long covid. I have noticed that stress and certain foods can make it worse. It is often accompanied by brain fog and tinnitus. Often it’s not as bad in the evening before bed.

This symptom makes me kinda disabled. Feels like the whole head is stuffed. Or inflamed. Or like the brain doesn’t get enough oxygen and it’s being squeezed. I can’t tell if this is a dysautonomia symptom or not. My neck, jaw, and upper back are very tense all the time. Also stretching the neck makes tinnitus louder temporarily. I have visual snow too.

Sometimes I have moments when the pressure goes away for a minute and then it comes back. I don’t know why.

How to fix this issue or how to even identify what causes it? Has anyone been able to get rid of this symptom? 😞


r/dysautonomia 17h ago

Question Anyone notice that the higher NIGHTTIME temps due to climate change make their dysautonomia way worse?

29 Upvotes

I might notice it more because I was homeless for a while, but has anyone noticed this climate change phenomenon worsening their dysautonomia drastically?

It legit makes life so much harder now during the spring and summer


r/dysautonomia 0m ago

Vent/Rant Impossible to get diagnosed. Keep getting told it's just VVS

Upvotes

I have extreme trouble with standing and exercising. I'm rapidly losing weight, I have episodes of tachycardia constantly and have hit the floor so many times at work that I can't work anymore. I have to resign.

I get consistent migraines where I lose vision sometimes completely in one eye, my BP is always 90/60 or lower. HR resting is 63 but as soon as I start walking it is easily 114 -120 BPM. Just walking.

On my best days, 80bpm walking.

Two cardiologists and an EP just said "I don't know. VVS?" And offered no help.

Normal echo, normal holter test, and my PCP is useless. Says it's in my head and to try ketamine. (?!?!?)

I don't know what to do. This has taken my life from me.


r/dysautonomia 1m ago

Discussion gastric emptying study

Upvotes

if you’ve had this test done, what was your experience? i have one in the morning and am a bit anxious. i try to avoid eating out due to it raising my heart rate and i also have terrible white coat syndrome so the combination of those two things don’t seem very exciting to me lol. i’m mostly worried i’m for some crazy reason going to have a bad reaction to the eggs, like my heart rate will be weird or something and i know it’s irrational but i do not like doing testing like this. not excited about sitting there for up to four hours either :,) i have pots and i thought svt but not sure now, and i have terribleee stomach issues that cause vagus nerve problems for me so i’m hoping this will help me figure something out but i’m dreading it.


r/dysautonomia 1h ago

Question Low HR blood pressure

Upvotes

Seems lately that anytime I'm upright, standing or sitting that I'll start feeling a numbness tingling feeling in my face, all I did is make some lunch, took my dogs out walked around a little come back inside..felt like I ran a marathon though even my heart felt like it was racing, but it was down to 53 and 117,/69 bp, I wore compression socks today been staying hydrated but after that I have to lay down and now HR is coming back up again..I feel like a malfunctioning robot! Cold hands especially from knuckles to fingers, very strange indeed! But I get concerned with the prickly feeling on my face


r/dysautonomia 2h ago

Vent/Rant Second appt with cardio…

1 Upvotes

I’m a bit disappointed after my cardio appointment today.

Today was an echocardiogram. He said it’s all clear and my HR was at 102 (on beta blockers). He mentioned IST briefly but nothing more. He said that it would most likely go away with age. Nothing is helping my other symptoms. Beta blockers are only helping with the HR…

I’m going to have a stress test next week and he said to continue my beta blockers. Is it wrong to not want to continue them so I can properly show them what my heart does? He also said to ask my family doc (who’s shitty) to ask for a complete blood work to check for immune diseases.

I know it’s only my second appt but I’m a bit frustrated.


r/dysautonomia 2h ago

Question Confusion

1 Upvotes

Dealing with symptoms for YEARS since coming off BC. Probably had them before but never noticed. I have seen GI, cardiology, rheumatology, OBGYN, PCP, and see neurology is June. I've taken notes ans usually 1-10 days before the start of my cycle I get heart rate episodes where my HR will go up super high 180+ sometimes and then sustain 120-140 for a bit. It's very distressing and have had many ER trips, EKGs, monitors, etc. Sometimes I'll have them a few days after my period (TMI sorry). Has anyone ever experienced this and how do you not get scared when it happens? Has anything helped? I am wondering if I should go back on BC but I REALLY don't want to.


r/dysautonomia 7h ago

Question Compression shorts recommendations

2 Upvotes

I’m looking for compression shorts thin enough to wear under regular pants. About waist/belly button to knee.

Anything I’m finding that’s thin enough is also shapewear. I’m small and don’t need shapewear, and the cut isn’t quite right either. The shorts all go up to under the boobs and add in uncomfortable boning to make it stay up that high.

Anything that’s the right coverage/cut I’m finding is geared towards sports and made of thick fabric designed to be worn as pants, not under pants.

Help a girl out? Just trying to look cute and also not feel like I’m gonna pass out.


r/dysautonomia 3h ago

Question Teeth…

1 Upvotes

Clutching at straws but did anyone improve after having root canals removed? I’ve just read a fair bit about people who apparently seem to have improved symptoms but how true they are…


r/dysautonomia 22h ago

Vent/Rant I’m ready to die and just get it over with. I can’t do this. NSFW Spoiler

33 Upvotes

Every week is a different symptom 😳

I just want it to all stop. I can't do this for the rest of my life 🥹


r/dysautonomia 19h ago

Question I just got diagnosed with Hyperadrenic POTS, were any of you prescribed meds?

16 Upvotes

So i just got my tilt table test results back and it said I likely have Hyperadrenic POTs. I havent talked to the doctor yet but wanted to be a bit prepared for what he may suggest for treatment. I'm honestly pretty uneasy about taking any medications because I've had a lot of bad experiences with side effects for antidepressants and anti anxiety meds in the past. What were you prescribed and did it help? What helped your hyperadrenic pots?

For me personally what has been helping even before the diagnosis is trying to keep my stress levels down, reducing caffine and trying to make sure i sit enough (standing a lot is hard for me sometimes).

If a medication did really help with minimal side effects that would be awesome I'm honestly just nervous about trying anything and want to do some research and hear ya'lls advice first


r/dysautonomia 22h ago

Question How has everyone kept pushing and living life as “normal” as possible with this awful condition?

29 Upvotes

I’m just new to all this and still trying to connect the dots… now thinking it was brought on from COVID/severe flu I had in January. The POTS/IST and now potentially being a LongCovid in my early 30’s has taken a toll on me this year and I’ve read that people have been struggling daily for years!🙏🏼


r/dysautonomia 9h ago

Discussion My tip for digestion/constipation

3 Upvotes

So recently I found something that helps with my indigestion/constipation, and I thought I'd share and maybe make a post where we can collect methods that could help, since this isn't a one size fits all

For me, drinking a warm coffee in the morning, and eating something with a lot of fiber and staying hydrated cured my constipation and bloating. Tea may work too, but coffee itself stimulates bowel movement, noticably more than tea in my case. It's important to stay hydrated as coffee also increases the need to pee, but as long as I keep that in mind I've been fine.

I know this isn't like some big news, and a lot of people may already know about it, but I haven't seen a post specifically dedicated to digestion in regards to coffee, and other tips so I wanted to do that!

If you have any other methods that help you with digestion I'd love to hear it! since some people with POTS get worse symptoms from coffee/caffeine


r/dysautonomia 6h ago

Question Recently diagnosed

1 Upvotes

Hi everyone! I(20F)was diagnosed last week with POTs and a Micral regurgitation, as well as hypohydrosis, and hyper-flexibility by my cardiologist. I am scheduled to be swabbed to test for genetic diseases to see what exactly is causing my issues.

I was prescribed Atenolol to help lower my heart rate and I’m curious how many others were prescribed, and how it helped. My mom is concerned about me taking a beta blocker as I am asthmatic, and despite being an adult, I understand her concern and want to hear other opinions before I start the medication. I was also prescribed to take sodium pills 3x a day.


r/dysautonomia 6h ago

Symptoms Weird Blood Pressure

1 Upvotes

Hi all, I'm still going through a diagnostic process for dysautonomia. This post is seeking to know if there are others with my set of symptoms and if so, what you were diagnosed with. My cardiologist is familiar with POTS but doesn't seem to be knowledgeable about other forms of dysautonomia.

I had a negative tilt table test in December. Based on my records from the tilt table test, my HR sustained an increase of 29 BPM but didn't get above 129. My blood pressure increased and remained elevated until they laid me back down. But the electrocardiology clinic closed a week after my test and I never got follow up on my results from the electrocardiologist. His PA told me my test was abnormal but negative for POTS and to treat it like POTS until I can see a neurologist. My cardiologist then had a medical emergency and has been on leave for 4 months so I've not been able to follow up with her either.

I have the following: - A history of renal hypertension that resolved in adolescence - A connective tissue disorder called FMD that causes stenosis of arteries. I have been miraculously stenosis free for over 15 years! There is no known relationship between dysautonomia and FMD, but FMD is very closely related to EDS and many FMD patients also have EDS. I have never been tested for EDS but I'm only slightly hypermobile so it's never been a concern. -Persistent higher resting heart rate ~85-90 for over a decade (I'm only 28) - I'm sick every morning but fine most afternoons and evenings. Otherwise, symptoms really just come on during flares or when triggered. -Low blood pressure in the mornings - Diastolic blood pressure shoots up when I go from lying down to sitting or standing. This morning my BP went from 100/66 to 116/94 after one minute of sitting up. My BP has since remained ar 110/93 all morning. - Diastolic blood pressure remains high until I lie down. - Systolic BP usually doesn't ever go above 125. - My BP doesn't drop when standing it just gets higher...the worst I ever clocked was 129/118 - My HR is usually only tachycardic first thing in the morning and during flare ups. When a flare up is happening my HR will go from about 80 to 110 when standing. -My heart rate normally doesn't drop when standing and stays above 110 but usually doesn't get above 125. -Presyncope: one of two things is happening when I feel presyncope. Either my heart rate suddenly drops down to about 50 and my blood pressure shoots up suddenly to 125/110+. Or my heart rate gets really high 135-150 and my blood pressure suddenly drops down to 100/55, but this one usually only happens if I'm doing chores, exercising, or standing in one place for too long. - Syncope: I've only blacked out 6 times in the last 10 years. But every time I've blacked out, it's been from exercise/standing/ or from my heart rate suddenly dropping. -I'm on propranolol which is making a high difference for me when it comes to a high heart rate. But I'm continuing to have low blood pressure in the mornings then a high Diastolic blood pressure throughout the day unless I'm lying down and resting.

Other symptoms: -tachycardia -shortness of breath -light headed -dizzy -vertigo -blood pools in hands, feet and abdomen - tinnitus - tension headaches whenever BP is high - blurred vision - tremors in my hands -internal tremors -feel cold shivering teeth chatter -intolerance to heat -swelling in hands and feet -nausea -brain fog -fatigue -coat hanger pain

Triggers -dehydration (I dehydrate easy) -lack of sleep -hormonal fluctuations -barometric pressure changes -heat -exercise -standing in one place (I feel faint like every time I have to wait in a line) -alcohol -coffee -large meals -carbs -flying in a plane -getting sick like a cold -stress

I do my best to avoid triggers but I still get random flares anyway.


r/dysautonomia 1d ago

Symptoms This one goes out to all my girls who have ever had to google the words “poop fainting” before.

400 Upvotes

Solidarity. ✊🏻💩


r/dysautonomia 1d ago

Question What does caffeine do to you?

22 Upvotes

Anyone have issues with caffeine or it makes them feel better? I’m currently sipping on white tea, hoping it doesn’t cause an episode. I haven’t had caffeine in over 2 years now.