jklass44

I have no idea if this is POTS/dysautonomia related or not, but does anyone else suffer from nightmares? I started having them earlier this year and over the past couple of months I've been having them weekly, sometimes multiple times per week - it's very unsettling!! They're vivid and violent and usually leave me absolutely exhausted for the rest of the day, probably due to the sleep disturbance. I can fall asleep pretty well at night and get a solid 4-5 hours, and then the nightmares start (I would assume REM sleep at this stage) and then I'm either woken and stay awake, or fall back asleep but continue to have the nightmare. I do take clonidine for my blood pressure, and I read that a rare side effect can be nightmares, but I've been on this medication for at least a year so I'm not sure if this is the cause. Anyone else suffer from nightmares or have any ideas on what I can do to reduce the frequency?

Is it POTS symptoms flaring or is it a legit allergic reaction to the insect bites? I once ended up in the hospital from a simple mosquito bite due to major swelling and all the symptoms you describe - although I guess it’s hard to say for sure because a lot of the symptoms are similar. It’s all so interchangeable! Could be MCAS. Have you ever been tested for it?

The top number is your systolic blood pressure and it measures the pressure in your blood vessels when your heart beats. The bottom number is your diastolic blood pressure and it measures the pressure in your blood vessels when your heart rests between beats. I know that doesn’t really answer your question but maybe it can help you to pinpoint why your BP is the way it is. It sounds like your vessels were resting well in between beats, but were having a harder time keeping up with the blood flow AS it’s beating.

It definitely can be a symptom. I have high blood pressure also and the only thing that (mostly) works for me is Clonidine. What does your doctor suggest? Have you tried other beta blockers or calcium channel blockers to bring your numbers down?

It’s very normal to have concentrated urine first thing in the morning because, as you said, the body is more dehydrated due to us not intaking fluids while we sleep. The foaming or bubbling however may indicate a minor infection like a UTI, so when in doubt you could always ask your doctor about getting a quick test done. If your sleep is already so interrupted I personally wouldn’t make that worse by adding in extra trips to the bathroom! If you’re worried, chat with your doctor. Best wishes!

I take Clonidine to lower my BP and Ivabradine to lower my HR. My doctors have had to increase the dosages of both multiple times though, so I’m not sure how much it’s actually working. The Clonidine does make me very sleepy, but I don’t faint more by being on it. Are you on medications currently? What has your doctor suggested?

I used to have a wrist one and had a feeling it was quite inaccurate because my readings were so wonky, so I brought it to a docs appointment one time and it was way off!! I definitely trust the upper arm ones more!!

Everybody is different in terms of when their symptoms hit, but in my experience anything under 90 should be discussed with a doctor. Perhaps your daughter needs something a little more than Florinef to help bring her BP up? Has she been salt loading and staying hydrated?

Hi there. Yes I do know what you’re talking about! Whether I’m socializing with people or just out by myself trying to get some errands done I can get very lightheaded, congested, flushed, etc. and then I totally start to space out (which can make driving an issue for me). I think you’re right in that social stress probably plays some factor, but it sounds like you have a very hypersensitive response to that sort of stimuli. A lot of people on this forum have hypertensive reactions to their environment - large groups of people, talking, sounds, lights - so you’re not alone!!

@joshrandall There is lots of validation to go around here in regards to symptoms and such, but that can only do so much. Pistol is right, please seek a trusted physician to help you out during this time as well. Once I found the right one it really lifted my spirits. Good luck and best wishes.

Oh, well that’s interesting then. I never had any xrays taken when I did any of my stress tests...

Thanks @Pistol!! A stress test was one of the first things they did with me (and then another 5 times...) but I’ve never had the nuclear version of it. So are you saying that it’s basically just a noninvasive version of an angiogram? Because from what you’re describing they both diagnose/rule out very similar things, just with that added element of “exercise” on the stress test. Like if a physician found an abnormality on a regular stress test I’m wondering if next step would be a nuclear stress test or an angiogram... I guess it can depend on the patient as well. I’m always too curious on the “whys”!! If I’m not mistaken, you were diagnosed with Printz Metal angina from your heart cath? Were you symptomatic at that time or did they induce an attack?

I’m just curious - why would a physician order a nuclear stress test versus something like an angiogram? They both visualize the heart and/or it’s vessels but what’s the difference diagnostically? Does it just have to do with blood flow vs visualizing the arteries?

Yup. You can have blood pooling/fluid retention with kidney or heart issues too, not just POTS.

I take Clonidine - for my BP - but it also knocks me out within 45 minutes of taking it (I have to be really careful with where I am/what I’m doing for my morning dose). Unfortunately it doesn’t keep me asleep. I try and go to bed and wake up at the same time everyday, but my sleep is very choppy - I wake up multiple times throughout the night either from sweating, because I have to pee or some other random thing. I don’t feel well rested come morning time, and much like MeganMN it is extremely hard to peel myself out of bed and I have to drag my body around for most of the day. Fatigue has been a huge symptom for me over the years and this is most likely part of it.

@gossamer4448 From my understanding if you have an exaggerated increase in your HR upon standing PLUS other symptoms such as dizziness, fatigue, palpitations, etc. but then your HR comes back down within a few minutes, this may indicate something like IST. POTS and IST are both not very well understood, have very similar symptoms and therefore makes it easy to misdiagnose one as the other. That being said, I’ve also read that you can have both conditions at the same time.

@potsiebarbie I know the feeling you describe very well. I still get it all the time, particularly if I’m reaching up to get something in the pantry or whatever. Oddly enough, I had about a dozen 24 holters and they rarely picked up anything, but my 4 week event monitor I had symptoms almost every day!! Definitely push the button if you feel something funky. Heck, even push it a few times when you don’t feel something because not every pvc/pac is felt!

Dear @MeganMN - I am very sorry to hear about your added symptom of anxiety! It sounds like you're dealing with quite a lot all at once... I do agree with JimL that you may need to start taking things more on a day by day basis in order to lessen your symptoms from flaring up. I had to completely change the way I organized my life when my POTS was at it's worst. I've had to learn to be much more "spontaneous" with things now as I can't plan any sort of activities in advance anymore because I don't know how I'll wake up feeling that particular day. It may sound silly, but making that change had a huge impact on my life because I felt like I was changing a part of who I was. Making lifestyle changes, worsening symptoms and having to stop working for a while made me quite depressed so I have been seeing a therapist a few times per month. Everyone is different, but it has helped me tremendously in ways I never even thought of. My advice is to just take it easy, keep yourself surrounded by good friends and family, and have an activity (perhaps something you can do around the house as to not aggravate your symptoms) or hobby to keep you busy - something you enjoy that will make you feel satisfied or accomplished! When I was bedbound I always felt so useless and scrap-booking actually really helped alleviate some of those negative feelings. Good luck with your tests on Thursday - Communicate these feelings to your doctors too. It sounds like you have some good ones taking care of you.

@fox in a box Hello! Yes I have had tinnitus in both my ears for many years - it is constant. Just recently within the last couple years I’ve developed bilateral pulsatile tinnitus as well but this one comes and goes. My primary doc tried a couple different meds that did absolutely nothing... I haven’t kept up with trying to find a cause/treatment just because I’ve had other symptoms take priority. As for tips, in the beginning I was able to drown the ringing out with some music or having a small fan by my nightstand. It doesn’t work anymore but I would suggest starting there!

Have you ever been tested for IST, Lyme or Lupus? Some of the symptoms you describe can overlap with these conditions.

I have this symptom all the time too and I usually attribute it to some sort of brain fog. It feels like my brain is just floating around in my head and it messes with my eyes as well - fuzzy spots, vibrating vision when I blink - it’s super annoying!!! Could be something with the inner ear, because I’ve had tinnitus/pulsatile tinnitus for years too. I haven’t found anything that relieves it, just have to let the episode pass. Anything help you?

@ANCYThis is GREAT!! I love goats - they're so much fun to be around and they can be so silly!! Thank you for sharing

This gave me a good chuckle - but it's SO TRUE!!! Such good advice to keep in our back pockets - take it easy and don't rush... So much easier said than done of course but one day at a time!!

Well it sounds like they took it seriously enough to order the tests. Also, they wouldn’t have discharged you unless they felt it was safe to do so - this is good news! Do you take any meds for the RBBB? Hopefully your palpitations ease up now... Good luck with the follow up and be well.

@potsiebarbie I’m sorry to hear you’re in the ER! Did you ask the doctor what exactly he thought was irregular about it? It’s good that they’re ordering some tests to be on the safe side... I’ve had similar experiences, both where the doctor said my rhythm sounded abnormal but the ECG didn’t pick up, and also where the ECG was abnormal but the doctor couldn’t hear anything. Usually palpitations are pretty benign, but they can definitely be scary if they happen often. I’ve found being on Ivabradine has helped lessen the frequency of my palpitations. Keep us updated!! Best wishes and feel better soon.