cmreber

I'm on a beta blocker, but sitting: 70s-80s standing, normal daily activities: 90s-115 or so exercise (depending on what I'm doing): 130s-180s

I have been on an SSRI to help with my other symptoms (& it has been doing wonders!) but I don't think it's done anything for my sleep.

Htberg, I'm glad you finally found someone to do it, and I'm glad it helped you! Sorry to hear about the complications though! I have seen my doctor for post-op follow up since, and he is a little concerned that I might still have some in the back, where they can't get with the typically laparoscopic procedure. He put me on birth control, so we're going to see where it goes from here! I'm crossing my fingers this is it for a bit! issie, omg! That is a LOT of surgeries! I'm so sorry you went through all of that, just to have a hysterectomy at the end of it all. My doctor thinks end game may be that for me too, but since I don't want children, he will probably just do that if the endometriosis and symptoms return, so I don't have to go through more of these procedures down the road. I'm hoping it doesn't come to that, but, who knows! That's interesting, I didn't know about the correlation to MCAS. I have actually wondered in the past if I don't have that. I will have to check into the prolapsed issue, I have the full surgery report. I know when I originally got tested for everything at Mayo Clinic, they believe that I may have a component of that, due to my hypermobile joints. Steph89, so sorry they didn't find anything before and wishing you all the luck with your upcoming surgery! I hope it helps you! I find that the anesthesia isn't too bad. At least, I don't have any trouble while in the operating room, though they were aware of my POTS when I went in. I do find that I am super light headed and dizzy with pretty agressive presyncope symptoms after the surgery, but only for the first day. Just take it slow getting up, and let your post op nurse know! dancer65, great suggestions! All very helpful after! I'm glad your hysterectomy helped you so much, and good to know if I have to go down that road later! Thank you everyone for the replies!!! I'm fortunately doing better, and healing up nicely!

MomtoGiuliana, I used to be okay on around 5 hours a night, but that was before the POTS. Mornings have never been easy for me, but now I can barely function! I'm sorry you struggle with needing sleep too, and it's interesting it was even more so when you were younger. It can be so frustrating when the rest of the world keeps going, and no one understands why you can't get out of bed to join them! I've never heard of hypesomnia though, I definitely will look it up! That sounds about like me! Stephanieann, I'm sure kids will "help" you get used to less sleep lol! Very interesting it has changed for you, and glad you can keep up with the kiddos! yogini, I know what you mean! It was really bad for me in the beginning, and it tends to go in cycles for me. Sometimes I can get by with normal amounts of sleep, and other times I just cannot get out of bed! I did recently have a surgery, so I'm sure my poor body is still recovering now, but it seems like any little thing that throws my body out of wack makes it that much more difficult! Kim, You sound a LOT like me! I have such a hard time getting to bed, and an even harder time getting OUT! I have never tested my AM cortisol levels, but I've always wondered if mine were off, just because mornings are so much harder than normal people--even my "non morning" friends. Oh man, I know how you feel about anything 8:00 or before. I am a complete wreck by 3! Fortunately, I work for myself, so it is easier for me to set my own hours as well, it just gets super frustrating from time to time when everyone else is up and starting their days! I would LOVE to find a medication to help! I hope someday we might, because I totally feel for you! Thank you for all the replies everyone!!!! xoxoxo!

Hello all! i have never been a morning person, but since the POTS diagnoses, I have been even worse. I know a lot of us have issues with the morning. I just was wondering how many hours of sleep everyone feels like they need? All of the people in my life seem to function just fine on 6-8, and then they are up, doing whatever, even on the weekends. Meanwhile, it seems like I need an average of at least 9, if not more! I suffer from insomnia, but even when I don't, it seems like I can even sleep 12 hours and not feel like it's enough. Just curious if anyone else is the same?

No worries, thanks for the reply anyway! ? My normal gyno isn't on call but I did just talk to the on call Dr and he said to monitor it and come in if it gets worse, and my normal gyno will call me first thing Monday. Thanks so much! <3

I get this too! And sometimes really itchy lower legs. Like others on here, I find stretching and massaging to be the most helpful.

Hi dancer65! Hopefully you were able to find some relief even though they didn't see it while in there! They were actually able to find a lot during my procedure and did a lot of cauterization. Everything has been healing nicely, but I believe I've started my period now and I was wondering how your first one right after was. I don't mean to share TMI, but I have been having heavy flow (which I have read is typical) but some has been rectal as well as vaginal and I'm just not sure if that's normal. Just curious if anyone else has been there done that lol! Thanks and hope you're having a good weekend!

Hello! This isn't necessarily POTS related, but I figured I might ask anyway. Like many on here, it seems like my body always has to do things the hard way, so aside from POTS, I've had to have my gallbladder removed, and now this ? Anyway, I had the laparoscopy on Monday and just had a question, if anyone is interested in PMing me if you've had it done. Thanks!!!

I haven't heard of it, but it sounds like an interesting read! I'll have to check it out and report back

Chziime, Very interesting articles, thank you! And I did end up talking with my doctor and I think I'm going to give it a go

That's actually not a bad idea. For whatever reason, I hadn't thought of it! Thank you!

Hello! I was just curious if anyone who is on Metoprolol has also taken St John's Wort, and if so, were there any issues? I tend to have high anxiety (which seems to be a byproduct of the hyper POTS, or at least exacerbated by it), and a friend of mine suggested St John's Wort. I was just at a doctor's appointment today and, of course, forgot to ask about it. I was just curious if anyone else had tried the two together at all. Thanks and hope everyone is having a good day! =)

I asked my cardiologist about this because I was really curious too. For the most part, I've gotten my POTS under control over the past couple of years and I am finally back to exercise, but I knew my heart rate was going up pretty high sometimes, and I was worried there was a point I shouldn't go over. While doing the exercise bikes in spin class, mine will sometimes get to high 180s, and that is usually around the time I feel out of breath and sometimes lightheaded/dizzy. My cardiologist said he'd prefer I keep it in the 160s, but that it won't hurt if it gets up higher than that, so long as I listen to my body if I become symptomatic. The other factor he was most concerned with was not so much how high the heart rate gets, but how long it takes for me to recover. I got a fitbit and have been using that to try and keep myself in a comfortable range for my body. Although it can vary from week to week, it seems like I don't feel bad at all afterwards as long as I stick to the 150-160 range for the majority of the workout. But like others have said, it can be so different from one person to another, so it would probably be a good idea to ask your doctor what they think for you.

Even on beta blockers and with my symptoms very manageable right now, this still happens to me. I think for me it's mostly because I take my meds first thing in the morning, so they have worn off by then, and also because I don't drink enough through the night I'm sure I am pretty dehydrated first thing when I wake up. I wear a FitBit at night so I can make sure my heart rate isn't too crazy, but once I take my meds, drink some water, and fully wake up, everything seems to calm down again.

I have one and you can feel free to PM me

It definitely seems like it affects a lot of us very differently, and it seems while some people can tolerate it rather well, others can't drink at all. I would definitely say take it easy and do whatever works for you. For me, as long as I stay really hydrated and don't drink on an empty stomach, I'm okay with wine. Hard alcohol, especially tequilla seems to give me a pretty high heart rate though. One thing I do enjoy about drinking wine socially is that it helps with the anxiety I can sometimes get when really overstimulated, so I'm a lot less prone to panic attacks at large social functions!

My resting heartrate is usually around 60-70 or so. When I'm sitting up doing stuff, it seems to be around 70-80. Walking around doing things I sometimes get up around 110-115. More strenuous stuff or stairs it goes around 130. I am on a Beta Blocker, but even when I can feel that my heart is racing or pounding when it gets up 90s and above, I don't really have the POTsy symptoms I used to. I did get one of those Fitbits and it's been really interesting to see what my heartrate does throughout the day and night!

Thanks everyone! You have all been helpful! I think for me it might be a combination of the two things: getting overheated and what Katybug said about it being linked to adrenaline rushes (which hadn't occurred to me, so thank you!). I've never taken my temp when it happens, but the first time it ever happend was at a concert in crazy heat and I wasn't sweating like I should. But when it happens while exercising I think it might be more likely a weird sympathetic nervous system response. Which would also explain why I get some of the other "panic attack" beginning symptoms when it happens, since whenever I get those they are usually hand-in-hand with some sort of adrenaline dump.

Hello everyone! Wow, it's been awhile since I've been on here. Which, is a good thing because I just have been finally feeling like I've gotten my life back on track for about 6 months now! For the past five years I've had quite a rough ride with POTs, and about a year and a half ago I was at an all-time low. Then, they figured out I needed my gallbladder removed, and after that, I've been so much better it's crazy. I still have POTsy symptoms from time to time and take a Beta Blocker, but I have been able to start exercising regularly and even completed a 10K marathon last month, which I can't believe. Anyway, I'm wondering if anyone experiences a strange symptom that has popped up for me recently. Since I've started working out, things have definitely gotten better, but when I'm doing cardio, oftentimes I'll be hot but get goosebumps, and it almost feels like when you have a fever (that hot/cold/shivery feeling). I'm thinking that I'm just not sweating like I should and my body just isn't quite sure how to regulate itself. I just got a Fitbit, so I'll be interested this week to see what my heartrate is doing when this happens, since I really haven't been monitoring that while working out. Does this happen to anyone else? And if so, is there anything you've found to stop this from happening? I don't think it's a big deal (at least I hope not!) but it is rather uncomfortable and occasionally I feel on the verge of a panic attack right after it happens, which isn't necessarily what I want in the middle of a class! Thanks and hope you all are having a good day!!! <3

I have hyper POTS and when I went on a cruise a couple years ago, I wanted to do an introductory dive. I was worried about it, but my husband and my friends knew to watch out for me and make sure everything went alright, so I decided to try it. But, it turned out that it was completely fine, and in fact, I actually felt GOOD down there! Maybe because of all the pressure? I'm not sure, but I had zero problems. I did have an issue with the medical questionnaire (because I filled it out truthfully), but you just have to get a doctor's signature saying you can do it. (I didn't know that, but, fortunately, my friends on the cruise with me were orthopedic surgeons, so they were able to write me a note!) I know it can be different for everyone though, and you might talk with your doctor beforehand, just to be safe (plus get the doctors note), but good luck! I had so much fun doing it and would like to now get dive certified!!!!

Hey Mike83IRL! Sorry, haven't been on for awhile! Have you been watching season 10????? So far I'm loving it! Drunken karaoke, twisted Dean, dark Sam, and the King of **** pining away for his lost "bestie" hahaha! Last night's was fairly heartbreaking but SO good! I'd be interested to know what you think about Demon!Dean so far! (And, sorry for any spoilers for anyone who HASN'T seen Season 9 finale!) Soul Survivor was directed by Jensen, who did an amazing job, I thought. Especially the "Shining"-esc hunting Sammy throught the bunker scene with the flashing red lights, etc. Fantastic! I am really looking forward to the 200th episode, Fan Fiction (two episodes from now). It sounds awesome and, apparentlly, will be slightly musical hahaha! Can't wait! Oh, and I got to take a trip to Vancouver in August to go to the Supernatural convention there!!!! It was so much fun!! And these actors are the nicest people in the world. (And TALL). So my girlfriends and I did a photo op with the four main guys: Crowley, Castiel, Sam & Dean! Here it is hahaha! http://media-cache-ec0.pinimg.com/originals/ee/4f/7c/ee4f7cfb3d7200f1b5cb01e9ef4fc920.jpg (Sorry, you have to click the link because it won't let me just paste a picture on here!) We'll just call it "Team Free Will uses civilians as human shields against Crowley"... and I hilariously look completely happy to die as a human shield... Don't laugh TOO hard... And as far as Fringe goes, it really does pick up, in my opinion. Especially once you start really getting into some of the story lines! Season 2 was really great, I thought!

Finalcntdwn, oh I love Fringe!!!!! My husband and I are in the 3rd season now and I can't wait to watch more! I just finished Sherlock (and now am waiting anxiously for S4 which will be forever before it comes out) and am making my way through Doctor Who while I wait for the new season of Supernatural to start up in October. Oh and we're getting caught up on The Walking Dead as well. I haven't ever been too much into anime (my brother watches a few things though), but I'm sure I'll give it a go one of these days. We do like to break out the old Transformers cartoon we have on VHS from time to time though! LOL!

Tammy Kay, It sounds like you were both lucky to have found each other. I am so sorry for your loss. It is amazing how much love and support our furry babies can bring to our lives, and it is such a difficult thing to go through losing them. Sending you hugs and good thoughts!!!!

Hello everyone! I have been having some recent issues due to a flare and my neurologist is having me take my blood pressure/heart rate readings both laying down and then standing, over the course of the next two weeks. I have a blood pressure cuff that I got from the local CVS Pharmacy awhile back, and it has been pretty good. The problem I'm having now is that I can get the readings for laying down, but when I stand for a couple of minutes (in the morning) I get super symptomatic and experience pre-syncope, but the blood pressure monitor will keep bringing up an error message so I'm not able to get an accurate reading for what's happening when I feel the worst of my symptoms. Does anyone have a suggestion for a better BP monitor? Maybe one that is more sensitive to sudden changes or weird readings? Thanks and hope everyone is having a good day! ~Christine