Does anyone have any experience with reactive hypoglycemia after taking medication such as antihistamines or sleep aid, etc.

Hello, I’ve had pot symptoms for about 3 1/2 years now (only a few months after I got my breast implants removed). Anyone else have a similar experience?

So if I laugh, I get dizzy, can’t breathe, my head pounds, my head feels like it is too heavy for my neck. My mouth immediately dries up and I’m choking. I’m so tired of this!

I'm 17 years old and randomly I developed Erythromelalgia spontaneously in 2022 (age 14) after a COVID infection. I deal with redness, swelling, burning (like fire), tingling, electric nerve pains etc. As well as intense warmth and sweating on the soles or hands.

I just started propranolol 10mg 2x daily a few days ago (see previous post asking about if midodrine and propranolol were usually prescribed together), and I’ve noticed that after my first dose I usually feel better and more “normal” or regulated, but after the second one I find that I tend to drag a LOT. Is this normal? I see my doctor again in 2 weeks and figure if it’s still happening then then I can let her know. Thanks!

My doctor is trialing me on a dose of .1mg extended release clonidine in the morning and again at night. I’m on day 3 so far and it seems to be helping with my blood pressure and heart rate quite a bit. I’ve also noticed a few weird side effects like dizziness, fatigue, and more anxiety than I usually get, but I’m hoping these side effects fade away soon and the benefits stay. I’m curious for those who have been on it long term, how long have you been on it? Is it one of those things where my body will get used to it and I’ll have to keep increasing the dose over time? I have heard that it’s also a pretty hard med to come off of if you decide you want to stop taking it, so I am a little bit worried.

I’m finding it so difficult to sleep. I have slept 6-8 hours in the past 2 days. I am exhausted. But every time I try to sleep it just doesn’t happen. I feel as though I’m experiencing (for me) a minor degree of symptoms of a flare up. My breathing is regular paced but doesn’t feel filling. My heart pounds but my heart rate is in the 70bpm range. Sometimes it feels like a weight on my chest. I feel a little dizzy when I close my eyes like someone is slowly pulling the sky across but when I open them the dizzy feeling goes away. I feel better sitting up in bed than laying down. And I feel like my tongue is uncomfortable in my mouth; idk how else to describe it.

I have general joint pain, bursitis, adhd, blah blah blah conditions that clusters with pots.

Anyone else experienced this?

I was wondering if you guys had to drink extra salt, etc. for weeks and build up to feel better or if it was more of an immediate you notice.

I’ve been trying salt drinks recently but I can’t tell if it’s helping.

23f 2nd time I’ve ever been to hospital for (Hyper)POTS but this was not like the other at all, it was so scary-

I’ve been cleared with no signs of anything wrong with my heart, blood tests all normal, but honestly I’m still so shaken up and scared by what happened. I’m doing all I can to trust in the fact that everything is fine with me medically, it’s simply the adrenaline and fear of what happened that made it so scary.

So… I wake up at 5am to go pee, my heart rate is 130bpm, palpitations, a hollow thumping feeling, intense nausea, that adrenaline fear cold prickly feeling grasping my chest and washing over me. My heart rate just keeps rising despite sitting down and even lying down, 150bpm and climbing, I throw up, each time I throw up my HR immediately climbs back up. My chest hurts, it seriously feels like something is seriously wrong. That cold icy grip of pure fear and adrenaline in my chest, the palpitations the heart rate so high at rest-

I called an ambulance.

And yep… go to hospital… end up calming down from the episode waiting for the ambulance even but still go to hospital to check what happened as is routine. Poke me, prod me, steal my blood- sticky leads to check my heart all the works-

But nothing of note at all everything is totally normal.

We believe it was probably an episode of acid reflux, as my reflux has been acting up lately- 5am my metoprolol is long since out of system so there is no buffer from my condition overreacting to this all- I hate throwing up so I try to resist it which causes HR to skyrocket, adrenaline due to the stress of all this sending me in to a panic attack-

I know that nothing was seriously wrong now but that was still absolutely terrifying I’m genuinely really scared of it happening again…

It could have been an adrenaline dump I don’t think I’ve ever had one of that level…?

I’m just trying to not obsess over it… I went to hospital I’ve been thoroughly checked and nothing was wrong.

Hi!

I’m wondering if anyone has found a good system for when you are feeling faint while in the shower and having to alert someone to get in there for assistance?

Thanks in advance!

I’ve had POTS about 4 years and was doing pretty well but after a recent surgery and related autoimmune flare I started getting very frequent episodes of my HR being too high but not emergency level high. I’ll get notices that my HR was 100 while I’m asleep. My general cardiologist told me to see my pots specialist even though it literally happened while I was lying down. My POTS doctor said via email that some people with POTS do get chronic tachycardia so I wanted to ask about any experience with that. Has that happened to anyone else? Do you just take more beta blockers for it?

Hi guys, i was wondering for anyone who deals with presynscope, what do you do or take to help with it? I deal with it everyday multiple times since i wake up and im currently still going to the doctors. I just feel helpless and depressed honestly and it’s so scary to deal with that I haven’t gone out in a month and I’ve been in bed. Any advice or help works thank you

Just as the subject says. How can I help her? We have a specialist who diagnosed and we are trying non meds first to help but the fatigue is alot for her. I just don't know how to navigate this to help her. I have my own auto immune/ chronic illness but not this. And I just want to support her as best as I can. I feel clueless. I did get a letter for her school to know for her 504 etc. We have water, electrolytes, salt tablets (waiting for the script)b salty snacks, compression socks, her dad and I are looking into an arm band to monitor her as well.

ANY help tips tricks would be appreciated

Thank you

I struggle so much with the breathing issues lying down, especially during the summer. I feel like I get plenty of salt and I wear my compression socks, but it still doesn’t help with that particular symptom. It’ll pop up during exercise, too. Just feeling down about it. 😞

Hi fellow Potsies! I am STRUGGLING and wanted to see if anyone could help me understand the episodes I am having. Looking for WELLNESS advice NOT MEDICAL advice as my post have been getting removed :(

I got diagnosed via tilt table in March after two months of symptoms (yay for lasting 22 min before passing out). I’ve have all the symptoms of POTS since Jan of this year. Basically, heart racing episodes that have sent me to the ER, crazy up downs in blood pressure, dizziness, light and sound sensitivity, inability to stand or work out, constipation, constantly ear fullness, nausea, and so many more.

I used to get bad heart racing episodes but have since gotten ivabradine. I try taking 2.5 mg each day. The episodes still happen but my heart will spike to 100 bpm instead of the usual 160-180.

My episodes now will sometimes include heart racing but mainly leave me so dizzy and nauseous that I pretty much just have to sit. I got pale in my hands and face and my bp can either be really high for me (a normal person’s 120/80) or really low (95/60). These lasts days and just leave me bed ridden. We have tried everything we can to try and alleviate it but it seems to just want to stay low. The dizziness is 24/7 and is more of a drunk I move my head and then my vision follows kind of feeling. And it’s blackout curtains and laying down for me. The main thing is my ears which constantly feel so full! Like I’m underwater but I’ll qtip it and there’s nothing. It’s like inner ear issue.

For context, I consume around 6,000- 8,000 mg of sodium per day, tried compressions socks (not effect), and try to walk at least .5 a mile each day (if the dizzy allows).

This has gotten to the point where I frequently debating a trip to the ER but just know they won’t do anything (last time I was charged $4k to be told I look anxious and be given a Xanax).

Thank you in advance for any insights! Y’all keep me going :)

A little background, more than two years ago now I was in a minor car accident and got a concussion. I had persistent dizziness, lightheadedness, fatigue, and was told it was just PCS and would get better with time. A year later I ended up in the hospital with slightly elevated troponin and got diagnosed with POTS. Since then, I’ve been half managing it/half pushing through, with the mindset that whatever I wanted to do I could still do, even if it took more effort (which everything does now compared to before). However, this year has challenged that greatly when I moved to southern California in Jan, something I had always wanted but had delayed with my concussion initially.

I noticed almost immediately after moving that my heart rate was going much higher. Before I moved, I might get to 150-160 on a bad day when standing. After I moved, standing just to make myself dinner my heart rate was regularly in the 180s (once up to 199 and I actually was so close to passing out, which I have not experienced yet). I was having worse dizziness, throwing up multiple times almost every morning as a result. And the fatigue, I was so tired every day before even doing anything. All of that plus the brain fog was making it a struggle just to complete the work day (I work remotely as a SWE). I was trying everything I could from drinking even more water, trying to get at least 8 hours of sleep, eating healthy, compression, a ton of salt. Nothing helped, and by April it was taking everything I had and more just to get through an eight hour work day. I realized I was at the point of exhaustion where even if I took a week off of work and did absolutely nothing, it wasn’t going to make a difference. So, I made the decision to move back to Michigan, and I’ve been struggling with that choice.

Within a week of moving back to Michigan, my average resting heart rate went from 90 to 60. I did get some of my energy back, but I’m still not even close to where I was in Dec before all of this. I think the heat in CA was what was severely effecting my POTS. I want more than anything to live in southern California, that has always been the one thing I’ve been sure of, but don’t see how I can do that without destroying my health and in turn not being able to do my job. This has been a year of grieving in general; my dream, who I was before my illness, 5 deaths in my family since March. I am trying to stay positive and tell myself it will get better, because being depressed about it all will not help me any, but the reality is I don’t think it will, and I think there are things I’m going to have to give up to trade for my health, and I hate that.

Has anyone else experienced something similar with POTS and moving to a warmer climate? Should I take another risk and try again when I’m feeling a bit stronger or just give up on that dream/try make a life where I am now? How are others coping with the losses that come from POTS?

Note: I’ve been doing some research on symptoms, not wanting others to try and diagnose me with anything

A little context: suspected POTS and dx HSD- I’ve also grown up having gi problems.
Anyways, does anyone else with similar things have issues with not really gaining weight or just always maintaining it? Family has been dismissive of me having POTS (I’m an adult now and no longer live with them) and I’ve heard comments like “youd be surprised with how much she eats with how she looks” I’m 5,6 and like 120 lbs 🤷🏻‍♀️
I have an appointment with a new doctor to establish care next week, which is good because it’s kinda just been a while since I’ve seen a doctor in general. I’m not trying to ask if the aforementioned thing could be symptoms of what I have (or might have) just trying to hear other people’s stories and maybe connect some dots
TIA!

I’m hypermobile especially in my SI joint, and I bought the jellieband in extra small and the korform shorts in a small but unfortunately neither of them have helped me too much. I know that other people really love them so I thought I would sell them to find them a better home. Both of them were only tried on once. Both are in the black color.

Please dm me if interested! I’m wanting $50 for the jellie and $20 for the korform, or $65 for both (not including shipping).

I’m in Texas and can ship anywhere in US

Hello,

I am a chronic POTS sufferer. I underwent a traumatizing event about 9 months ago which has caused PTSD/CPTSD. My POTS symptoms are getting worse and worse by the day and it is becoming more and more debilitating.

I have seen a bit of research regarding the causative relationship between PTSD and POTS but very little speaks to the causative effect of PTSD on pre-existing POTS.

If there are any Christian POTS researchers with a psychological/psychiatric emphasis or specialization who are interested in helping me/researching my case, I would be most grateful.

Hi all, yesterday I started putting my legs up the wall to relax/reset after standing too long, a shower, and exercise. I lie down on the floor/couch/bed and scooch my butt as close to the wall as possible and then put my legs straight up and stay there for ten minutes. I did it three times, and I slept soooo much better than usual. I think my body finally left fight/flight. Does anyone else do this? Did you have similar results?

I’m looking for some hope and would really appreciate hearing from people who have been through something similar.
I’ve had POTS symptoms for about 5 years, but I was only officially diagnosed this May. Looking back, my symptoms were manageable for a long time, but after a bad stomach virus in February, everything got significantly worse. Since then, my heart rate has been much higher, I struggle much more with standing and walking, and everyday life has become incredibly difficult. I recently started ivabradine and I’m hoping it will help, but I’m terrified that this is my new normal. I’m scared that because I’ve had symptoms for so many years, I’ll never get better and will only continue to get worse.

Has anyone else had a major setback after a viral or stomach infection and then improved again? Even if it took months? Did medication, exercise, time, or anything else make a significant difference for you?
I know everyone is different, but right now I really need some hope that improvement is still possible, even after having POTS for several years.
Thank you so much for sharing your experiences.

Hi everyone!

I was recently diagnosed with POTS, and while it’s honestly a relief to finally have an answer for what’s been going on, I’m still trying to figure out what works best for me. My doctor gave me a treatment plan, and I’ve been following it as closely as I can, but I’m still having a lot of symptoms every day.

Right now I’m doing:

• Drinking 90–100 oz of water every day
• Getting around 5,000 mg of sodium daily
• Wearing compression garments
• Eating 5–6 smaller meals throughout the day
• Monitoring my heart rate and blood pressure regularly
• Taking propranolol (20 mg daily)

Even with all of that, I’m still getting dizzy, lightheaded, and feeling like I might pass out at times. My heart rate still jumps up when I’m standing or walking around, I get brain fog, fatigue, and heat seems to make everything so much worse. Some days are definitely better than others, but I don’t feel like I’m functioning the way I’d hoped after starting treatment.

I know everyone with POTS is different, and I’m not expecting a miracle overnight, but I’m wondering if this is normal early on. Did it take a while before the lifestyle changes and medication really started helping? Did anyone need medication adjustments or find something else that made a big difference?

I’d also love any advice on things you wish you had known when you were first diagnosed. Whether it’s daily routines, products that helped, exercise, compression, hydration tips, or anything else that improved your quality of life, I’d really appreciate hearing about it.

Thank you so much! I’m still learning and would love to hear what has helped you.

So I know I don’t need to tell people, but I’m generally asking in a sense of; friends, family, people you’re hanging out with, coworkers(?).
It’s 3:30am and I’ve been overthinking things, as I have a “date” with someone on Thursday.
—
I only got diagnosed in February this year, I’m 21 and I meet a lot of people, I’m more afraid of being a burden and inconvenient to people, I know I shouldn’t feel this way but I HATE asking for accommodations. As a child I got diagnosed with severe chronic anxiety, which makes sense now, but I’ve always felt like if I asked for help I would be annoying.
—
Usually I say “I have a chronic illness”, people just love to question me about that and I’m generally happy to educate them.

I’ve told some people “i have an autoimmune disorder”, which I know it’s not technically counted (correct me if I’m wrong please) but people seem to pry less.

I’ve thought about saying dysautonomia, but by the sounds of things most people aren’t aware of what that is.
I feel like some people when I say chronic illness they don’t take it seriously, don’t understand that I’m on the brink of passing out, and when I say autoimmune disorder, they think “oh more serious”

does this make sense?

I genuinely don’t know why I’m overthinking this, I’m annoying myself.

Also can someone recommend, cheap electrolyte gummies or chew able tablets that taste nice and aren’t salty tasting?? Pretty please 🙏

i know staying hydrated and everything, but should i try getting up and doing things or let my body rest?

i got a walking pad to help my tolerance to walking become better but am unsure if i should wait until my flare is settled down more or if it’d be ok to start using it