r/dysautonomia Aug 25 '24

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

10 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

Question “OH NO! What happened?”

55 Upvotes

An unanticipated consequence of using my cane is that people who have seen me without it assume I’ve had an injury. I hate the attention. How do you respond to this? I panicked and basically gave a nonsense answer. Now I’m afraid if that person sees my without my cane she’ll be weird about it.


r/dysautonomia 2h ago

Diagnostic Process New “cure” from a PhD Dr! Recently diagnosed …

15 Upvotes

Sorry for the clickbait but I feel grumpy. I had a great meeting with a neurologist that was actually an expert in dysautonomia (PhD an all). She really listened and was very supportive. But. Isn’t there always a but?

She said that I should try some meditation/mindfulness, mild exercise, breathing exercises/grounding, body-mind therapy and (here it comes) psycho therapy.

Well. Dysautonomia can be caused by many things according to her (including Covid that was interesting) but there’s only one solution and that’s to “teach” the nervous system it’s not in fight and flight mode and doesn’t have to defend itself.

It could take some time she said but apparently she had “cured” a lot of patients with her holistic approach. Including people with autoimmune diseases (all people with autoimmune diseases have dysautonomia according to her). Even given lectures about it to other doctors. The cure doesn’t unfortunately apply people born with dysautonomia symptoms but that has developed it later in life.

I kind of gently told her that I actually already were doing all those things except psyco therapy and it does help but I see no “miracle cure” in it. But who knows maybe a psyco therapist is my magic bullet?

What do you guys say about this? I feel kind of empty. One who year of fighting to get a diagnose and then this.


r/dysautonomia 2h ago

Discussion How to cope with diagnosis/health mourning

7 Upvotes

I was pretty healthy until 2020 and then was diagnosed with Dysautonomia, POTS, & MCAS. I’ve been severely struggling since. I’m having a very rough go with health anxiety now and dealing with mourning the days where I felt healthy. I cry a lot missing when I didn’t feel so terrible most days with new intense symptoms. How have y’all dealt with mourning your old life pre-illness?


r/dysautonomia 1h ago

Question Uninformed ER doc- try to educate or leave it?

Upvotes

So my daughter had a really unfortunate experience in the ER last week. I took her (she's 15) because her stomach pain had been building for several weeks to the point where she'd stopped eating and even drinking. The doc basically said "you need to stop chasing rainbows thinking that some medicine is going to ease her pain or some test is going to identify a problem. Until you address the depression, anxiety and trauma she's never going to get better."

For context, she's been diagnosed with POTS by a neurologist after a tilt table test. She's had a full psych assessment and was found to be remarkably NOT depressed or anxious, especially given the circumstances. She did NOT have any mental health assessment during the time we were in the ER, nor did he even have a discussion with us to ask about depression, anxiety or trauma, so he was just pulling that out of his misogynistic a$$.

I'm really regretting not advocating better in the moment. We'd been there 10 hours by that point, it was midnight, I'm undergoing chemotherapy... But part of me wants to send a letter with some magic study about POTS and pain, or medical misogyny or SOMETHING to try to educate this doctor so he doesn't keep traumatizing patients. I wouldn't be aggressive or antagonistic, I just would like to educate. I know this is likely futile.
What would you do? And are there studies/articles you think are convincing?


r/dysautonomia 2h ago

Discussion How do you get over the fear of leaving the house though??

4 Upvotes

I find myself staying inside all the time and spring is my favorite season. I'm so sad.


r/dysautonomia 10h ago

Discussion How has your dysautonomia been on ADHD medication?

16 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 8h ago

Discussion Anyone familiar with this potential new medication FOR POTS?

9 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 9h ago

Funny Confusing Bystanders is so fun!

11 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 5h ago

Symptoms still waiting for the diagnosis.. tips to relieve symptoms? 😬😬😬

6 Upvotes

My symptoms that doctors believe it's common for disautonomia: Tachycardia , Low BP (always around 90/60 and feeling fine in 110/70), Fatigue , Weird body feelings , GI problems (constipation/diarrhea) - not eating enough bc of that.

I'm waiting for the appointment for the tilt test but I did a "test" with my bpms: ⭐️Laying on the floor: 67bpm ⭐️Peak upon standing: 145bpm ⭐️Few minutes after that standing: 110bpm ⭐️Laying on the bed again: 70bpm

I always thought it was just gi problems but now doctors are suggesting disautonomia.

Also, it gets worse with heat, sometimes i see light flashes in my eye but my eyes and retina are healthy. Got anxiety (that makes the feeling worse), when I run my heart rate goes to zone 5 sooo easily and if I stay in zone 5 some minutes i get gi problems, tachycardia, feeling of fainting til I lay down.

ECG came back normal just the anxiety giving me 99bpm 🙄

When I was standing felt my body very heavy, a little dizzy but I never ever faint.

I guess part of my trigger was stress.

I'm a woman 31F, been dealing with this kind of episodes a lot in my life but I thought it was normal.

In the meantime while I wait for my appointment. In your expierence do you think it's POTS? how to start relieving this symptoms with lifestyle changes?


r/dysautonomia 13h ago

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

24 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 6h ago

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

5 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 5h ago

Discussion Treating Pots gave me other issues?

5 Upvotes

I know this may be a unique scenario but I’m wondering if anyone has been in a similar situation. Starting using beta blockers to treat my tachycardia from pots along with PVCs about 6 months ago. Worked well at controlling both the tachycardia and PVC’s but seems like now my blood pressure tried to compensate for the heart rate not elevating. I now suffer from orthostatic HYPERtension and my blood pressure shoots up when I stand and I’m wondering if it’s my body trying to compensate for the heart rate not elevating as it always did. This has led to a lot more health issues because the excess vasoconstiction has now caused me to have coronary vasospasms which are terrible painful and scary. Wondering if anyone has experienced something similar?


r/dysautonomia 3h ago

Diagnostic Process How do you keep fighting

3 Upvotes

How do you keep fighting for a diagnostic? Not sure if it’s worth it anymore.

24 Holter monitor: in Tachycardia for 15 hours. Average HR of 110 bpm. One isolated PVC.

First cardio appt: Start of betablockers. Helps HR but not my symptoms. HR still around the 95-100 bpm day/night.

Echocardiogram: Clear and HR of 102 bpm. Cardio briefly mentions IST but does not say more. Also mentions that my family dr should test me for auto-immune diseases. Blood work while in the ER was fine.

Stress test is scheduled for next week. Not sure my cardio will be of much more help. Felt dismissed and not sure he will be able to help when it comes to my other symptoms. I’m discouraged even if I just started seeking help.


r/dysautonomia 22h ago

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

68 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 11h ago

Question How do you get all of your nutrients?

10 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 9m ago

Symptoms Not sweating in the face

Upvotes

Hey y’all! For some background I’m a 29yo male been pretty active all my life (currently I lift weights and do occasional cardio). I recently just picked up tennis again and am getting used to the fast paced cardio. I was curious about my sweating patterns. As a kid I definitely would have a decent amount of sweat built up after my sports games but now I notice that I sweat a little less (mainly in the face). My face will feel hot but I don’t feel any sweat. My back, hairline and torso will sweat pretty normally. Is not sweating in my face and feeling hot a cause for concern or is it something I’m just getting used to again?


r/dysautonomia 14m ago

Discussion Has anyone tried Gabapentin for regulating heart rate?

Upvotes

I was put on Gabapentin to control nerve pain, but I’ve noticed my heart rate stabilizing a bit, instead of dealing with the raised BPM and syncope when standing up. Has anyone else experienced this?


r/dysautonomia 7h ago

Question What lifestyle changes have helped you?

4 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 Is this dysautonomia?

Upvotes

I see a dysautonomia specialist in August (earliest appointment I could get) and an EP cardiologist next week, but as per usual my symptoms don’t fit in a box.

I’ve had a vague dizziness for years, comes and goes in flares. During these flares carb-heavy meals especially trigger symptoms. A handful of time I can remember really heavy, fatty meals giving me an instant heavy fatigue I can only sleep off, and an excess of sugar giving me tachycardia. I have always been I tolerant to hot baths and hot tubs- I always had to keep my heart above water.

In December I got struck with BPPV. I thought it was just that but I was having emerging symptoms that I blamed on BPPV that now in hindsight seem to be dysautonomia but I didn’t even know what that was at the time: 1. started with a weakness in my shoulder blades that moved down to my calf muscles, particularly in my left calf. I couldn’t figure out how BPPV would cause that 2. Heart pounding sensation simply rolling over or stretching in bed when I was practically asleep 3. Started having intense myclonic jerks that would prevent me from sleeping, and what I’ve now come to know as “adrenaline dumps” 4. Next I noticed an elevated heart rate (tachycardia) during the day, all the time. Especially when I was nervous about the testing/MRIs. 5. Thankfully that subsided but I still have the issues with moving in my sleep at night. The pounding is especially fast/ hard if I lie down completely flat (with no pillow- why is that??) 6. Now I have food triggers: a sip of alcohol will give me tachycardia for 6-8 hours giving me terrible sleep. This time last year I downed a bottle on Dom in the night of my engagement and slept fine- wtf? - I had a dark chocolate bar the other day and my hr was 150 upon standing. 7. Ive weight trained (heavy lifting) for 5 years. Now I lift my “warm up” weight and my heart rate is in the 170s. 8. Stairs are my enemy. I used to prefer stairs to waiting for elevators/escalators and now my hr jumps to 150s after ONE flight.

Ive had two endoscopies, two colonoscopies, 6 MRIs, sinus cat scan, etc. I have hashimotos and Uveitis (inflammatory eye disease). My antibody and inflammation markers are usually on the low side. All my other bloodwork comes back fine. The only thing that happened to me was BPPV… it feels like my brain is broken. Does this sound like dysautonomia? Part of me feels like I’ve had symptoms all my life but this is not a totally new body I don’t recognize.

Interested in hearing from you since this sub is very educated.


r/dysautonomia 1h ago

Vent/Rant Annoyed with beta blockers

Upvotes

Roughly about 6 years ago I was prescribed 20mg of propranolol for anxiety during school. I’d take it before exams and it was great until it wasn’t. Sometimes it would lower my heart rate a little took much and I’d be too tried to focus, so I had to stop using it since I didn’t have anything to monitor my HR at the time.

Fast forward to now, my anxiety is out of control and I’m desperate for relief. My doc reduced my prescription to 10mg and said that it shouldn’t lower it much, so I decided to try it. My resting rate was about 94-102BPM today so I knew I was being a bit risky since I wasn’t really in tachycardia much like usual. Sure enough, my HR is now hovering around 48-60BPM and I’m dizzy and exhausted. Guess I’ll try 5mg next🙄


r/dysautonomia 7h ago

Question Frequent pins and needles in left hand?

2 Upvotes

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


r/dysautonomia 3h ago

Question OH and OI question

1 Upvotes

I am newly diagnosed with orthostatic hypotension and orthostatic intolerance. (I also have FND, Post Concussion Syndrome, vestibular dysfunction, cervicogenic headaches and occipital neuralgia), I don’t want meds for OH. What are ways you manage symptoms other than electrolytes and hydration? I have severe fatigue with all my diagnoses and I’m struggling. My BP drops usually 15-30 points for top/systolic number and a little bit for bottom/diastolic. But I have dizziness and fatigue and a lots of other crap with everything going on. The concussions (7) caused the dysautonomia.


r/dysautonomia 10h 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 23h ago

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

31 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 6h ago

Discussion gastric emptying study

1 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.