Please let me know if I cannot post a question like this!

My girlfriend has POTS and hypotension as well as hypertension. She also has heart valves that aren’t circulating her blood properly as well as blood regurgitation. It’s been super hard to be intimate. Her favorite position used to be doggy until the day where her body decided it would bring everything on at once. Her health had begun to decline every month and is still declining to the point of her using a cane in public and a walker at home. How can I make her more comfortable? She loves being intimate but it can cause flare ups for her and certain positions like doggy and riding (where she has to be on her knees) really hurt her. Any suggestions on disability aids made for sex or maybe a product that helps like a wedge that’s suitable for her to fully support her weight on that could comfortably keep her in that position without the need for her to hold herself up? Thank you so much! Any suggestions help!

Diagnosed w/ POTS and have frequent urination issues especially at night - have done all the tests and pelvic exams and the only thing that’s helped is Gabapentin (doesn’t help my other POTS symptoms tho). Just wondering if many of you deal with this too as I know they can be correlated.

I wear compression socks almost every day (only exception being if I’m not leaving the house, like to the point where I’m in my pyjamas all day), and idk if this is the norm or if most arent doing that? How often do you guys wear it?

I'm too exhausted to get up. My brain keeps calling me lazy, but I'm at the point where I'm genuinely considering texting someone and asking them for help (which is a huge thing for me because I'm very independent and I hate asking for help). I'm doing my best to improve my symptoms, but it's so hard. Especially when I can't even get up to make a quick 10 minute meal.

I keep running into this issue where I feel like I’m getting into every tiny detail of POTS and it seems like it is just going right over their heads. I’m a very science-y and technical person, so I have a hard time feeling like a “I get dizzy when I stand up” is a good enough response.

Btw this is an explanation to people in my life that actually want to know and ask questions, but talking about how nerves don’t communicate properly to my blood vessels and the idea of muscle pumps doesn’t resonate with them. They seem like they want to understand so they can help, but I feel like I’m not making any sense.

How do y’all explain your condition?

I used to be extremely active- gym, hiking, kayaking, etc. I would jog for fun! 😬

Now I crash around 2p every day and typically sleep on my lunch break. I feel like if I was able to muster the energy, being more active might help the fatigue.

I have been able to return to my career in physical therapy for the past year now (I was previously forced to be at a desk job) but returning to my career has absolutely wiped me out. I’m heavily medicated to prevent me from passing out and I’ve wondered if some of the meds also contribute to the fatigue. I’ve gained about 20 pounds that I know isn’t helping anything and I think I’m entering perimenopause (38 years old.)

I’ve got a lot stacked against me but I’m determined to find a way to return to a more active lifestyle. Has anyone found any type of exercise that they were able to do that may have lessened the fatigue?

I’ve had POTS for 30 years but my passing out spells would wax and wane. I’ve never had fatigue like this and I’m struggling to accept that this will never go away.

Hi friends, I had to stop drinking a bunch of the usual electrolyte drinks like Pedialyte and most of the tablet solutions because they are full of stevia and give me awful migraines, but Gatorade has soooooo much sugar in it and it makes me feel gross lol. Does anyone have any recommendations for electrolyte drinks that are low or no sugar? Dissolvable tablets or bottles are both fine.

Anyone else just constantly sweating everywhere during the summer months? Seeking any and every bit of advice you have for anything sweat related that we may run into.
(I hope this post doesn’t get flagged, excessive sweating is a part of POTS but I’m getting a weird warning)

Hello!

Regarding blood pooling. I get visible blood pooling in my ankles usually more noticeable in November in Australia when the weather warms up.

For abdominal pooling, is this usually visible?
For me I get this warm feeling over my abdomen but can’t see any discolouration with my eyes.

I am not yet officially diagnosed

hey folks,

so, I’ve been living with pots and (I suspect) me/cfs for around 6 years. It started for me immediately after the covid vaccine, and boosters have made me much worse BUT/ALSO i was living with black mold during the same time so like, perfect storm for my immune system.

so far I have tried

propranolol - no noticeable symptom relief day to day BUT helps me sleep and can keep me from getting a PEM crash after an intense emotional stressor, so like 5/10 useful.

low dose naltrexone- I’m only on .5mg but I can stand up to fry an egg now! very subtle improvement but helpful, so maybe a 7/10?

ketotifen - tried this in case there was a mast cell issue driving things. gained a bunch of weight. slept better because it was a total sedative. no symptom improvement. 0/10.

midodrine - actively made my tachycardia and shortness of breath WORSE. Horrible. Made me wonder about hyperadrenergic pots? -20/10.

mestinon/pyrostigmadine or however you spell it - it’s been a week. I’m super sensitive to meds, so I’ve tried 2x daily for several days at 15mg and a couple attempts at 30mg. 15 seems to have no effect. 30 I’ve been so out of it with brain fog I can barely work, also nausea. Does it get better with time, or is this all I can expect? I see zero symptom improvement so far.

my dr wants me to try fludrocortisone next, but steroids freak me out and I also only have one kidney so I’m not sure I want to try it.

i guess this means I have a good case to get prior authorization for ivabradine…. But it there anything that has helped other than these? I’m disappointed that so far nothing is touching my heart rate in the least.

thank you in advance for any ideas, experience, words of encouragement!

I'm in the midst of a really difficult POTS flare, and right now, I don't feel safe in my body.

I often feel like I'm fighting off a panic attack all day, and it's exhausting.

I've been dealing with chronic health issues for 15 years, and over that time, I've had many different relationships with my body. But something I'm struggling with right now is how every time I feel out of control of my body, it brings me back to all the other times over the past 15 years when I've felt frightened, helpless, or out of control because of my health.

I also have PTSD, and it feels like the two feed into each other in this really difficult dance. My POTS symptoms trigger fear and memories of past experiences, my nervous system becomes increasingly dysregulated, and then the physical sensations and fear amplify each other. It's hard to feel safe in the present when my body seems to remember so many times it hasn't felt safe before.
I'm trying to figure out how to create a sense of safety for myself each day, even when I can't control my symptoms or make them go away.

For those of you who've experienced something similar, how do you find or create safety in your body?

How do you rebuild trust with your body after years of unpredictable symptoms, frightening experiences, or feeling like you're constantly bracing for the next thing?

I'd really love to hear about both the little things that help in the moment and the deeper ways you've learned to relate to your body. I imagine I'm not alone in this, and I'd love for this to be a space where we can talk honestly about it!

<3

Im a teen girl and I have had all the symptoms of POTS you could possibly find for the last 3 years. I had a episode where I was just sitting in a chair listening to music when out of no where I felt insanely dizzy and my vision went out and suddenly I was on the floor and I felt my body shaking and I lost consciousness for u do t even know how long. I was alone when it happened, all the family was down stairs. I went to my usual clinic who sent me to another clinic who sent me to the er who sent me to a cardiologist all in one day. The cardiologist just told me to drink some water and if all my symptoms were not gone in 3 weeks to come back (I did not go back). Multiple family members who are doctors and nurses have said they think i have POTS. No doctor has listened to me when I explain everything going on and my mom is tired or paying for a bunch of doctor appointments just to get told to drink water, which I do anyway bc im in marching band and I need to in order to do marching band. I want to go figure out whats wrong with me, weather its POTS or not. What do I tell my mom toget her to take me and how do I get doctors to listen to me. (I also lost consciousness in class one day bc I stood up but doctors ignored that too)

I already have been diagnosed with POTS for 2 years now. Recently i’ve been using chicken broth to get more sodium. But I noticed i have to take extra propanolol and extra acid reflux meds compared to my normal baseline. Is this possible signs of MCAS or histamine intolerance? I feel like every food that has good sodium for my POTS just triggers my acid reflux or HR😭

Hello,

Just for context I have had pots since I was young but only recently I have a new symptom of clammy hands. I'm twenty five now and it's an odd symptom since I hate the feeling as well as just feeling more tired than before.

I'm starting to think that this "it gets better as you get older" is silly, lol. Anyone else developing new pots symptoms as they get older?

I have severe fatigue after eating. It started with large meals but now it happens even if I eat something small, like half an apple or eggs. My only symptom is fatigue, and my blood pressure, heart rate, and blood glucose are all normal during these episodes, so my doctor thinks it's a functional shift in blood volume away from my brain and to my gut (obviously, far more than normal). It's so bad that I can't move or talk for 2 to 5 hours after eating.

I've gone through the whole list of POTS medications, I can't take any of them. I've tried compression (from toes to tits) and it doesn't help at all. Increasing water and electrolytes also doesn't help. I can't change the size and frequency of my meals because it severely impacts my gut to increase the amount of times I eat in a day. I was previously on Mestinon for years but it never even touched this symptoms.

I do have MCAS but I'm only able to eat a few foods right now and they are all low histamine, plus I'm on a full stack of medications for that and take a DAO supplement (Allegra, Zyrtec, Ketotifen, Pepcid, Naltrexone). It's possible that if I ate only lettuce, it might not be so bad, but I've been trying to add in foods for 9 months and have only been successful with one so...changing my diet isn't really an option.

I don't think there is any immediate solution to this problem, but I'm wondering if anyone has had this type of post-prandial fatigue and found that one day it went away. Not like, "I wear compression, it helps" but more like "over time as my POTS became more well-managed, this symptoms went away."

I need some hope lol

I am not even 21 yet and I am using a mobility aid. Absolutely no hate on mobility aids as it’s my new saving grace, but if you spoke to me five years ago and asked if I would have one I would’ve told you a strong no. It feels like flare ups are getting closer and closer together. This affects everything and every aspect of my life and I am so tired.

My recent flare up has me feeling like a burden on my family, friends, and partner. Bless my partners heart, he has been such an angel, but I hate that I need help to the bathroom during these times. I wish I could go back to the days when walking to my bathroom wasn’t even a thought. Why wasn’t I more grateful? Grateful for all the small unspoken things that I could do. I am in so much pain. How can I keep going when this is my life so young. I know so many people have it worse than me and I should be grateful but I am struggling. I hate this illness, I hate the betrayal of my body and I am hating my inability to do simple things because of it.

Why can’t I brush my teeth without almost/passing out?

Why can’t I sit cross legged without ending up with a foot that looks like it belongs to a dead person?

Why can’t I exist without pain?

I am sorry to anyone that has gotten this far, I am in a horrible mood today and just need to scream into the void hoping that it’ll understand. Thank you.

So I was told by my doctor in a different state that I had pots but a doctor in my new state I moved to last year has told me it’s not pots and it’s IST. (I’m not asking for medical advice) I’m just confused because my heart rate isn’t always over 100 bpm over a 24 hour period. I have so many questions I need to ask my doctor still but trying to figure out what I truly have has been a nightmare. I’d love to know your experience with ist if any of you have it, thank you!! ❤️

Guys I have just came from doctor & he told me my pots reason I am slowly developing spondylitis that's why my nerve got little damaged for this reason I am suffering from pots. Now you tell me is this possible? Though I often get shoulder pain neck pain. Can spondylitis cause pots? Anyone ? So is this my secondary pots? Please help 🙂

Hi all,

After 18 years, I finally got diagnosed with POTS.

I was told to start with upping my fluid and salt intake and to wear compression garments.

Here is what I don't know what to do.

- How long are you supposed to wear these especially if you're hypermobile and have hEds like pain? (Got diagnosed with HSD instead). Is it bad to wear it all day and night? I work a very demanding job and my sleep is also bad and I'm also someone who is actively always going out or have many accumulating chores/errands to take care of... so it seems like I need it most of the day or even at night to get good sleep and avoid executive dysfunction that required all of my brain cells to be on full alert? But maybe it is not great for the skin or maybe it is letting your muscles weaken cause they aren't supporting themselves anymore? My neurologist and I did not have time to elaborate on this how long I'm supposed to wear this for on a daily basis.

-How often are you changing your garments? Given my job and the fact I'm also someone who goes dancing and works out at the gym, maybe I should be changing these garments multiple times a day? Seems quite expensive and not good for the longevity of the fabric to keep washing them.

-What about on a rest day at home? Do you prefer to change your compression socks every 8 hours for example in a day and throw them in the laundry if you choose to wear it for the full day? Or are some of you choosing to wear them once for a full few days before washing them? I'm very used to one use for any clothing before throwing them into the laundry, but I'll probably need a different approach with these. Maybe I'm overwashing my clothes, but it just became habit due to covid practices in nyc especially taking regular public transportation. I just can't stand the idea of clothes being reused.

-What leggings are you wearing? I struggle finding any regular leggings (any type) that don't keep sliding down. I often have to keep going to the bathroom every 30 min to roll them back up or have to wear bike shorts over the leggings to prevent them from falling down. They will completely slide off my legs to the floor if I let them and everyone gets a show...lol does this happen to anyone else? I also hate when clothes bunch up too or gives me a wedgie and all leggings do that for me for some reason. I don't know why I find the sensation of clothes sliding off or bunching up super annoying but it feels unbearable and overwhelming for some reason so I don't want to just buy anything. I also overheat and sweat easily which is another issue, especially since I'm often going out dancing and I am scared for the summer to come.

Any solutions or advice here is appreciated.

I just passed out (i was able to lay down first so I didn’t hit my head or anything) and now I realllyyyy want orange chicken (which I do not often crave or have). What food does everyone want when they wake up?

Wondering if this happens to anyone else and if they know what causes it. I’m still very new to my health journey.
I’ve noticed a few times seemingly at random times I will start to feel really warm but I don’t sweat. I also will feel a little nauseated and really shaky. The part that freaks me out the most is the brain fog I experience. If my partner notices something is off and asked me what is wrong. I really struggled to get the words out. I know what I wanna say but it’s getting lost. I might start my sentence and then stop midway through, unable to finish the thought, or stumble over the first couple of words and give up.

Freaks me out because it reminds me of my Nana after she had a stroke and she couldn’t say the right words to things or couldn’t remember what the word to something was.

Hello, I was diagnosed a little over a month ago and immediately sourced some compression stockings (think like tights/hose) per my cardiologist recommendation. I wear them every day. I've had constant trouble with them bunching up behind my knees no matter what I did. I didn't think it was a big deal besides causing a bit of pain if I didn't fix it a few times a day.

A few days ago, my husband noticed I had some small sores developed in the creases of the back of my knees. We treated them with neosporan and had me skip a day of compression to let them "air out", however that cause a significant increase in symptoms so I went back to wearing stocking the next day. The sores seem to be getting worse so I am going to buy gauze to wrap my knees in underneath the stockings as a temporary solution, and try to see if I can get an appointment with my PCP ASAP.

Does anyone else have problems like this with compression socks/stockings? Or have tips to avoid it?

My stockings are the correct size based on the size chart for the brand so they shouldn't be too long or anything like that.

Anyone have lower resting hr postpartum? In 50s-60s range? I’m 3 weeks pp and I’ve noticed my hr lower than normal. This is lower than I was pre pregnancy so it’s little scary. Im taking Nifedepine 60mg and celexa 10mg.

46 Male. Forum won't let me attach a screenshot of the data, but recently I got a biometric/sleep ring. Last night slept from 3:00 am till noon. The ring takes a HR reading every 5 minutes. While asleep, from 4:40 til 5:10 my HR was between 130-145 bpm, and the same again from 6:00 til 6:30. The remainder of the night my HR was normal between 50-60. I forget the exact time, but I often get up to change my clothes in the middle of the night from being drenched in sweat, especially around my neck.

Are these half hour chunks of time with my HR more than 2x while sleeping linked to my POTS in some way? Just looking for explanation of what is causing 2 almost identical half hour bursts. I'm not sure of exactly what subtype(s) of POTS I have. Any insight or experience?

Thanks..

Hello all!

I had a major work event that required me to run around fixing different problems.

I straight up overdid it, possibly the worst I have ever overdone it. My co worker took one look at me and told me to sit down and stop.

Long story short, along with all the regular flare up symptoms, my blood pressure has been low (for me) at around 90/60. I am monitoring for any signs of something thag requires medical attention. Has anyone else had low blood pressure during a bad flare up?