SpinnyC

Does anyone know what the normal heart rate response to raised arms should be? I searched online and got mixed results- some things said heart rate should go down, others said it would go up. Either way I'm pretty sure my response wasn't normal. Since having Pots I've always felt dizzy and tachy when raising my arms but actually saw the results on my heart monitor for the first time today. I doubled my heart rate just holding my arms at forehead height for under a min.

AllAboutPeace LOL that's too funny! I do have one doc that comes in and only says "so how have you been feeling" I always like that- no mysteries there. Same thing with the knocking on the door before coming into the exam room. I mean its not like you aren't just sitting there waiting for them!

My standards are- fine, ok or alright. I used to say "good" just as an automatic response, but I found more and more that the word (even as an automatic response) felt really wrong. And a lot of the time people believed me that I actually felt good. If it's someone genuinely asking how I am feeling, and not just a social nicety, I'll say I have good times and bad times. The one that really confuses me is when doctors ask "how are you" as they walk into the exam room. I never know if it's just the social nicety version of the question or if they are actually asking for a symptom status. Never know how to answer that one!

Sorry you are feeling so bad- lots of what you say sounds very familiar ( probably for many people on here). As far as your TTT concerns, I think doctors who truly have an understanding of Pots know that symptoms can vary quite a lot. I've read a few posts on here from people who's medical history made docs strongly suspect Pots but who's first test was done on a good day and didn't meet the critera so they ended up being retested. I've had two TTT, the second one, which was done with an autonomic specialist, ended with an active stand. (Which was me physically standing on my own for 3 minutes after the TT while they monitored my vitals.) I had a larger heart rate jump on the active stand. But met Pots criteria during both phases of the test. Personally, I was told by my docs office to stop all medicine for a few days (three or five I can't remember) so that it wouldn't skew the results. I wasn't on the same med as you though. If you have questions about taking your med or not definitely ask your doctor what to do.

Thanks for answering my question flyingsquirrel. My deep breathing response was abnormal and when I asked about it I thought they said my hr went up. So seeing that an increase in rate was normal had me really confused.

What does an abnormal heart rate response to deep breathing mean? That your heart rate goes down? Or that it doesn't move much?

Batik Your drum analogy makes perfect sense! My bp monitor doesn't have an audible noise for reading the hr. My finger tip monitor does but I shut it off because I found the noise annoying... maybe I should turn it back on and check. The two monitors are fairly close when compared to each other. Mostly I find the BP/HR monitor is within 1-5 beats either way of the finger tip monitor. But the finger tip monitor keeps up with HR changes quickly, the bp/hr monitor will error if my HR is going up fast or jumping around too much. I have compared the finger tip monitor to a heart monitor in the hospital and was told mine matched beat for beat with the monitor I was hooked to. The other thing that was a red flag for me was that I didn't see my HR jump all over the place all the time- only while having certain symptoms. It's to the point now where I can tell if it's going to be a "jumpy" reading or not. Like I said I have no idea if this translates to anything other than just "normal" pots symptoms. I'm still waiting for the results of the report from my cardiologist. Angela, I would say if you have any questions about what you are seeing on your monitor it's worth a call to your doctor. When I called mine I figured he was just going to say "yeah that's a pots thing" but after I described what I was seeing he wanted me on the 30 day monitor. I was kind of surprised... but figure it's better to know rather than wonder so I'm glad I called.

Like All About Peace said I was also told the bp monitors can have a hard time catching an accelerating heart rate. That's why I got a finger tip monitor- to hopefully see exactly what was happening. I have also seen low heart rates while standing (lower than laying down readings) on my bp/hr monitor. I assumed were a fluke until I started using the finger tip monitor and could watch my HR jump all around. I'm symptomatic when this is happening (flutters in chest, dizzy, ect) and know that something is up... but it remains to be seen whether or not the finger tip monitor is accurate or if it's just another Pots symptom and the monitor can't handle it so it gives an inaccurate reading.

The same thing happens to me! I also checked my bphr monitor against the doctors office and it seemed very accurate. I've also noticed that when I feel particularly bad I have a hard time getting the bp/hr cuff to read at all- it gives me several pulse errors before giving me a reading. Both these things were happening so much I got a finger type hr monitor so that I could see what was happening to my pulse with something that gave a continuous reading. My hr seemed to jump all around- very low into the 30's then way up into the 100's. I called my cardio to ask about it and they put me on a 30 day event monitor. Still waiting for the results.

When I started it my doctor had me log postural bp when I woke up, 1hr after each dose, and before bed. I had to fax the data in weekly. That way the doctor could be sure I wasn't getting too high a bp and it also helped to decide what dose would be most beneficial for me. I started low and was moved up a couple of times.

Pre syncope is absolutely awful for me too- it's the worst symptom I have. Although I know that hitting the ground is not good or safe- the times it's been very short warning and I didn't have enough time to react were actually better (symptom wise) than the times I've had enough warning to lay down consciously. I know there are different causes for fainting and wondered why two people who have the same condition would faint so differently. Interesting that individually people may faint at different speeds even if the cause of the syncope is the same.

I'm just wondering if anyone knows why some people experience presyncope and others don't. I usually get enough warning that I need to laydown (or at least sit) right away. A few times I haven't had enough time but have at least known what was about to happen- it was just too sudden for me to get to the floor. For some it seems like they are standing one minute and on the ground the next without any warning.

It's totally normal for me. I'm always exhausted after any type of activity or having people over/visiting them. I have a great time being with friends and family but I just don't have the stamina for all that "on time". I usually plan on having a very quiet day or two afterwards. Last year over the holidays I had to alternate being up with everyone and going into another room to rest for a while. Then on the drive home (I was a passenger) I basically had an exhausted Pots crash and could barely make it inside when we got home.

Those stories are really funny! I have one, similar to NMPotsie's. When I had my wisdom teeth removed I filled out that I had Pots on my paperwork. I wrote out the whole name then put "Pots" in parenthesis after it. I also mentioned it to the dental assistant. She nodded (which I took to mean she might not know what it was but didn't want to say) so I asked if she was familiar with it because it's not something she probably sees regularly. She then admitted she didn't know what it was so I explained and she asked some good questions. When the oral surgeon came in he quickly looked at my paperwork, looked at me while he started to prep and said- "So you smoke Pot" and I must have looked really confused for second while I tried to figure out why in the world he was making that assumption. The dental assistant began to actually laugh at him and said Nooooo she HAS Pots, NOT smokes Pot. And then explained it all to him. He looked pretty sheepish- and just told her to make sure she was careful when I had to stand up afterwards. When the procedure was done I made it down the hallway and into the waiting room where I got really nauseous, and almost passed out. They ended up laying me flat and giving me oxygen for a while. I think the oral surgeon felt really bad after all the "excitement" in his office because he called me at home less than an hour later to check on how I was doing. I also have a suspicion that after I left he looked up what the heck Pots was because during that call he was much better informed about what I should do during recovery "to try and not make my condition worse".

When I started eating high sodium I actually looked for lists of foods they tell people who are on low sodium diets to stay away from. All the foods that cardiologists tell all their normal patients to stay away from.

This has happened to me before... sometimes it just feels like my lungs are tired from the effort of breathing. It's definitely scary and uncomfortable! I also have asthma and have sometimes wondered if it's a combination of the asthma and Pots. I've noticed I've been more short of breath and feeling like this is the last few weeks, for me I bet it has a lot to do with the heat and humidity. In general my symptoms have been worse the since it's been really hot.

Thanks for the link MarkA- that looks like it would be really good but definitely out of my price range right now . The towel is helping tonight when it's still 90 outside and the ac units have been struggling to keep up all day. Definitely 15 dollars well spent. If you get the vest I'd love to know how it works for you!

That sounds awesome... now if they could only made a travel version I could take with me everywhere during the summer- lol. Either that or my own personal AC bubble, like a climate controlled space suit or something.

Good to know about the misters! I didn't know you could buy them for "personal" decks. I've only seen them in large commercial applications. I have used ice packs a lot when feeling over heated and it's nice but then I start to feel too cold in that one spot while the rest of my skin still feels over heated. So far I've liked the towel a little better because it's just something I can drape around my neck, head, arms, or legs and let sit there without feeling frozen. Although... that's with not being super overheated to start. I think for those situations where I'm already very overheated I'd still prefer the ice packs.

I was sitting in the waiting room at the doc's office and they had one of the morning shows on TV. In the segment they were testing good summer products and showed a towel that stays cool once you wet it. They said it stays cool for up to 2 hrs. This heat has been so awful- even in the ac somedays it feels too hot, so I was intrigued! The brand they had on tv only seemed to be available online but I found another brand in a chain drug store and bought it. The one I bought definitely does feel cool/cold (but not for 2 hr's ). I haven't really been able to go in the non-airconditioned parts of the house since it got really hot... and I would love to be able to take the dog out without feeling like I'm going to hit the ground. I've tried it out the last few days and although it's not like being in the AC or anything, I think it does help. Seems to give me a few more minutes in a hot environment than I would normally be able to tolerate. Plus on a day like today when the AC doesn't even feel cold enough it's really nice to use inside. Just wondering if anyone else had tried them, and if so what you thought? I had never heard of them before seeing that segment last week. There seem to be three different brands and was curious if anyone found one they thought worked better than the others.

I get tingling and numbness in my face, hands, arm, neck, back of the head and back. I had the arm/ hand tingling before any dental work. But it wasn't until about a month or so after having dental work that I got severe numbness on one side of my face. It felt like I had a shot of novocain, I went to the ER and they couldn't find anything. After a few hours it dulled to a "novocain wearing off" feeling. A few days later it spread to the other side of my face too- the whole episode lasted a week. It came and went occasionally after that but never as significant again... until I had more dental work done. This time I had the numbness feeling the next day. The first bout of numbness was so far away from having dental work done that I never connected the two, but the second time it happened it was so immediate I wondered if the two were connected. It still comes and goes but hasn't been severe since that second procedure. BTW- both dental procedures happened after I already had Pots. Both times I felt very faint standing up after it as all done, and became so nauseous I almost got sick in the office. They ended up giving me oxygen and had me lay down until some color came back to my face.

I'm on the fence when it comes to exercise. My doctor put me into a cardiac rehab program about a year and a half ago, before I was even diagnosed with Pots. It took me eight months to work my way up to doing some seated exercise and 22 minutes of slow walking on the treadmill (I wouldn't even walk a total distance of a mile in that amount of time). But I felt awful doing it- presyncope, short of breath, chest pain, ect, especially on the treadmill. I couldn't walk for 22 min everyday but whenever I even came close I'd be toast for the rest of the day. Overall I'd say I saw a little bit of improvement in my energy and functioning level- but nothing dramatic. Then I got a respiratory infection, it made the Pots much worse and I couldn't exercise for about a month. When I started back up again I was at lower level than where I'd started the first time. I could only manage a few minutes on the treadmill, and somedays they wouldn't let me go on it at all because my vitals were so bad. It took me four months to work back up to walking (slower than I was before) for only 8-12 minutes. Then four months ago I was finally dx'd with Pots and put on medication. In just these past four months I've been able to increase my treadmill time to 28 minutes (still pretty slow, still haven't walked a full mile yet). I've also increased time and intensity during seated exercise. Some days I still feel pretty dreadful but it's not as bad as it was when I was exercising without meds. Personally I think exercise was always good for my mind and it did help my body a little too. But without the meds no matter how much I tried, I just couldn't get past my symptoms to make any significant gains. I really believe no matter how hard I tried to exercise I would never be up to my current level if it weren't for the medication. I think if I went off it tomorrow I'd see a significant drop in my exercise ability. I'm not saying I'd be back to where I was four months ago, but I don't think I'd stay at my current level. So for me exercise alone wasn't an effective treatment, or even the most effective treatment. (It's hard to say something is working for you when after a year and a half you are still outpaced by 80 and 90 year olds.) But I know we are all different! And I'm really glad that exercise has significantly helped some people. My personal goal is to actually (finally) walk a mile before my next doc appointment in two months. I'm up to 3/4 of a mile... soooo close I hope I can do it.

Thanks so much for relating your experiences. My hr is usually on the higher side- normal resting for me now that I've been on Midodrine is anywhere from 70's to 80's, and as my doctor put it- that's amazing considering I was hardly ever lower than 100 just sitting (sometimes as high as 120). So seeing 30's even just for a few seconds, coupled with the feeling in my chest whenever it happens just doesn't seem right. Even if my hr monitor isn't accurate (although I'm pretty sure it is) there's something happening when I get that feeling that's causing it to show a number that low. Anyway, I took all your advise and called the office today. I asked the nurse very specific questions about how the monitor attached to your chest worked vs the monitor you hold up to your chest. When she confirmed that the monitor attached to your chest all the time would in fact be capturing more data than the one she gave me (which is absolutely not what she said when I asked her about it in my first appointment). I told her I didn't feel this was working and I wanted a monitor that was attached. She definitely didn't sound happy about it- but oh well, she wasn't very helpful or happy the first time anyway. Tomorrow morning I go to have the monitors switched. I'm not sure if the electrodes they'll have tomorrow are hypoallergenic or not but I can do something about that myself if I need to (thanks photographerrn for that info). If the monitor shows that my hr really is getting that low I'll definitely be asking if Midodrine could be the cause. Thanks Everyone!

Glad you are feeling better and they could give you something that helped! And OMG- on the temp, I can't imagine how you must have felt if you have a low temp normally too! Last time I got the flu I went to the ER and was admitted into the hospital for half a week. They put me on oxygen right away, couldn't get me well hydrated no matter how many iv's they gave me, resting hr of 150's-160's. They kept saying "good thing is/ or we can't believe that you barely have a temp" but I was at 100 or 101 which I kept telling them was pretty high for me. And I felt super feverish. Take it easy and don't try to force feeling better is my best advice. It definitely took me a while to feel normal after that last lung infection.

Hmm.... very interesting about the Midodrine! Before being on any meds I did a 24 hr holter and it showed only a hr down into the 50's (not sure if that was when I was asleep or not). But the way I feel when I've seen the hr monitor jump down into the 30's feels new (like a more intense version of some of my symptoms) and has only been happening in the last month or so- which is why I called the cardio doc. But a little over a month ago was the last time they up'd my Midodrine dose. When that was happening to both of you did it stay in the 30's or did it jump around? As far as I can tell mine only seems to stay that low for 10-30 seconds then jumps way up to like 90's- 100's.