potsiebarbie

Totally me with the wincing and shifting! Hey, at least this means we're not alone. Lol Nerves makes sense. 

I get these quick sharp pains randomly throughout my body. They are just for a moment (thank goodness!), but if they were any longer I'm sure I'd drop dead of the pain. Lol it can happen in the chest, abdomen, legs, even a toe! Some areas hurt more than others (torso is worse than leg). Honestly, I've kinda accepted it. Doctors look at me like I'm crazy when I tell them. But still the unknown scares me. Anybody experience this and/or have any idea as to what it is?

I have had Dr/dp since pots. Literally 8 months straight. So Idk what the cause, or what the solution is , but you are not alone! 

10 hours ago, FileTrekker said:

Given the stresses our bodies are put through, especially the rapid speeding up and slowing down of heart rate, BP fluctuations and high levels of Adrenalin or noradrenalin it makes a lot of sense we are very prone to them really. 

If a cup of coffee is enough to trigger them in a healthy person then having PoTS especially on a bad day is certainly going to be a trigger lol.

I guess I'm just having a hard time accepting that my heart's not just gonna stop and I'm gonna drop dead. I know it's stupid. Lol it just feels awful all day long. The rest of my body is just like *** get your s*** together heart. Lol

On 6/3/2013 at 10:30 PM, Agreeky said:

Hey everybody. I got so many responses on my eye problems I thought I would throw this out there too. Since last summer I have had a hard time breathing on and off. Some days it feels like my body is not breathing on its own. Other times I literally feel suffocated. This is unrelated to bp or heart rate. The weirdest part is this sensation I get on the left side when I breathe. It is almost like a paper bag is in my body and I can feel it inflating and deflating... Or like my lung has cob webs and I am breathing through it. So hard to explain. Lung doc stumped. I am thinking it is s connective tissue thing. I also get a sharp pain in upper left to middle rib when I breathe think it is diaphragm... Would love any input

Did you ever get any answers? This is my biggest issue right now.

On 6/1/2018 at 5:11 PM, Shannoncr said:

hi, I could be totally alone in this, but does anyone else feel like you’re not getting enough air? I get out of breath doing almost anything but even when I am just sitting here, I feel like I just can’t get a good enough breath of air. I often sigh a lot (& loudly, almost like a panicked sigh) but it’s involuntary. I noticed on my discharge paperwork from the hospital a couple months ago, my breaths per min were 16 when I was triaged & upon discharge it was only 10. The breathlessness is way worse when I have palpitations because they take my breath away & I cough involuntarily, it feels like a way to restart my heart or something. I dunno. I could be totally crazy. Even when I yawn, I feel like it’s not a good yawn. 

Hey I'm going thru something similar. Did you ever get any answers?

Thank you! Funny you mention fluid leaking back into the lungs, because my last echo showed trace pulmonic regurgitation. The doctor swore it was fine though. 

My new PCP is re-running several panels for herself and if (lol) they come back positive she will refer to rheumatology. 

I no longer have private insurance this year so I'm starting from scratch. Lol 

New cardiologist too!

38 minutes ago, MeganMN said:

I get them all the time, that is how I know it is time to take my Propranolol, haha.  last night my rate was 42 because every other beat was ectopic. Ick.  But they are not harmful, from a doctor's point of view anyway.  They are very distracting though. I find them less with the Propranolol.

Is that a beta blocker? I've never taken them, because I fear it would drop my already sometimes low heartrate. It's weird my heartrate just kinda does whatever the heck it wants whenever the heck it wants. Lol But honestly that palpitations feeling scares me. 

2 hours ago, FileTrekker said:

How many times a day do you get this?

Im getting an absolute ton of them currently. They’re ectopic beats, either PACs (premature heart beats originating in the atrium of the heart) or PVCs (same but the ventricle) - basically the heart has backup systems that are designed to keep the heart beating if the hearts normal pacemaker isn’t doing it’s job for whatever reason. The problem is these backup systems like to kick in randomly in between normal beats at times. Often this is caused by some kind of irritation, so caffeine, anxiety, smoking etc all cause them.

A slow heartbeat can also cause them. The reason for this is if the heart slows down, these backup systems may feel the need to fire and try to compensate unessasarily. If you find they’re only happening at low heart rates, that’s actually a good and pretty normal thing.

The good news is that these ‘ectopic’ beats are pretty much always considered benign and won’t do you any harm. They’re only considered significant in people with very severe heart problems such as a previous heart attack, and even then the PACs / PVCs themselves are not dangerous, only indicative. So try to ignore them and don’t worry about them. Don’t fall into the trap I am currently in where you worry about them because anxiety propagates them and makes them worse. But they will do you zero harm. I promise that much.

The bad news? They’re really, really annoying and uncomfortable and can easily cause anxiety and panic. Try not to pay attention to them. Easier said than done.

its always worth mentioning to your cardiologist especially if they are very frequent just to get them defined and for reassurance but other than that try not to worry.

p.s. Even though they feel like missed beats, they’re ironically extra beats. The reason they feel like missed beats is because the heart hasn’t had time to fill with much blood so when the extra beat kicks in, there is a very insignificant pulse you likely won’t feel at all. There is then a pause while the heart resets and then you go back to your usual beat. 

I get them daily as of a few-ish months ago. It feels like my heartbeat is trying to regulate itself, and it kinda makes me want to cough for some reason. It honestly feels dreadful. I can't drink alcohol because that will absolutely bring them full force. But they happen without alcohol anyways. It definitely worries me, but all your info definitely comforts me a little. I saw my new PCP today and mentioned it. She listened to my heart, did an EKG, and referred me to cardio. 

I get this really uncomfortable, indescribable feeling in my chest/ throat. I felt my pulse while this was happening and I could feel my heart skip a beat, and the rate seemed rather slow. I'm gonna bring it up to my doc today, but they rarely seem to take anything seriously so any thoughts, experiences, reassurance???

Love it! Had to screenshot it. Here's one I get a kick out of...

That looks delicious! 

I haven't seen any of those. I'm really interested into getting myself back to good health too. Are these on Netflix? 

I feel like carrying the extra weight that I'm carrying after my last two babies is contributing to alot of my health problems. I've had a real tough time trying to lose weight. It's so stubborn! Please any advice or experience is appreciated! 

Oh! And I heard keto is a favorite of those with pots. Any input there? I do have alot of gastro problems and I also heard the low carb of keto can be a godsend for that. 

Like I said, any advice and/or experience you can share would be awesome! 

Unfortunately I no longer have private health insurance so I have to start all over with a new PCP and no specialists. I'm really bummed/worried, and am hoping to bring some pots info in to her in order to increase my chances of actually getting the care and specialists I so desperately need. Any experience with this or links you care share? Anybody been thru something similar and have some advice? Thank you!

Long story short

I have positive: Ana, ccp, crp, and rheumatoid factor. 

The rheumatologist I saw was unhelpful and said I don't "match diagnostic criteria for anything". She said she'll do the "wait and see" approach and see me and retest in 6 months. I'm gonna try to get a second opinion, but I wanted to see if anybody could share their experience or knowledge with all this. 

Thanks in advance! 

1 hour ago, Jessica_ said:

Thank you!! I will definitely ask my neurologist about it, I think I need something a tad stronger than the klonopin. How do you avoid the dependency? I’ve always heard your body builds a tolerance and then you can withdrawal from them. Which is why I only dare take the klonopin a couple of times a week. If I dared I would take it every day because it does help my anxiety a ton but I don’t want my body to build a tolerance! 

I've always had anxiety (since I was a child). And eventually I started suffering from really bad panic attacks. So when I took them I felt normal. I've gone thru periods of taking them slot as needed, to periods of my psych having me take them on a schedule as preventative to not needing them at all. The worked great before pots, but oddly enough, not so effective with pots. Which totally sucks. So Idk. I've never had like an addiction issue with it, but I do know we build up tolerances which is why it was helpful to sometimes not need them at all, then when I go back I can start with a low dose. IDK if any of that makes sense. Lol Pots brain. 😵

1 hour ago, Jessica_ said:

OMG maybe we are finally on to something with this! I’m going to ask my neuro when I see him next week about it. I will let you know what he thinks, not that I’m always taken seriously so I won’t get my hopes up 🙄

Yes! Please lmk. None of my doctors take any of it seriously, because I have a history of anxiety. I feel like my pots either started, or at least made itself known after this last c section too. This was my third and last. My first two were emergencies. This one was scheduled. Yet, this one brought the most problems. The surgery took 2-3x as long because I kept "oozing" blood (that's how my ob phrased it). It was so traumatizing for me. I had to be given a clotting med during the operation. I also had my fallopian tubes removed. I do feel like the anesthesiologist had to stick me twice. And for some weird reason he wanted to do an epidural instead of spinal, but I insisted on spinal given my past experiences. IDK. Sorry for babbling, but I can't help but think it's related. 

On 1/2/2019 at 9:14 PM, Jessica_ said:

I have been prescribed klonopin and I take it as needed when I know I will be in a over stimulated place but it doesn’t really work that great. I still feel anxious and have those doomy thoughts. I see my neurologist next week I will ask him about Xanax. I have always perceived Xanax as something that knocks you out and makes you forget what happens while your on it. How do you feel on it? 

I have Ativan, Klonopin, and Xanax (I only occasionally use them, and never at the same time obviously). Lol They all belong to the benzodiazepine drug class. Everybody is different, but this is how my system (lol) works... If I want something to just barely take the edge off, and is so subtle that I hardly notice then Ativan. Emergency, panic attack, needs to work now, then Xanax. For something almost as good as xanax, but more "balanced" (not quite as strong, but last longer, then Klonopin. Like I said everybody is different. But I wouldn't worry too too much. Maybe do a trial run of a small dose of Xanax and see how it goes. Good luck! 

1 hour ago, Jessica_ said:

Yikes! Is that the same as a CSF leak? I was checked for CSF leak with a brain MRI and it was normal. I have had this tingling since 2013 so it started before my Dysautonomia. It was after I gave birth to my daughter so maybe it has something to do with my epidural? 

Now you have me thinking.... 

Mine was after my last delivery too! 

The prep wasn't great for me either, but the doctor was unsympathetic so I managed. I did it without sedation, because I didn't wanna add anything else to my nightmare of a dysfunctional ans. Interesting to say the least. Lol Sorry I don't have any great advice, but I'm wishing you good luck! 

I was prescribed florinef, but haven't started it yet. However, when my BP goes from low to normal, and my heartrate goes from high to normal, I still feel misfit cognitively. Derealization/depersonalization, bad memory, slow thinking, etc... Easily my most bothersome symptom. It's constant too. Has been for about eight months when my pots seemed to make it's debut. So probably not quite the answer you're looking for, but just thought I'd share. 

I'm not sure. I think the rheumatologist might have tested for it. If so, it was fine. My memory is literally the worst since this whole P.O.T.S. thing. I couldn't remember my son's name for a few moments the other day when I was filling out forms. I cried telling my doc that and he just thinks I'm "stressed". 🙄 I do take prenatals and a b complex on top of it. Not sure if that would help. 

2 hours ago, Pistol said:

@potsiebarbie - I think you found a good chiropractor. Yes - numbness should be looked into. I know of several people who saw a chiro and should have seen an MD instead. I their case the chiro DID treat them and later they - as well as the chiro - realized they should not have been adjusted. So - good job, chiropractor, for putting YOUR safety first!

I know! That's what I told my husband. I had some previous bad experiences with chiros. I told my husband clearly he knows what he's doing and doesn't just wanna take my money. What worries me is my doc brushed it off and prescribed Lyrica. 🙄