Dizzysillyak Posted November 16, 2011 Report Share Posted November 16, 2011 Hi all,I'm still trying to identify my symptoms so I can modify my behavoir. Clearly identifying my symptoms has helped me not freak out about having some freaky symptom of unknown cause. My bp drops upon standing so I know it's only a matter of time before I have to lay down. A few montha ago, I finally figured out that I have pots too after testing my bp and hr after standing for 10 minutes. I'd only been tested for oi, bp dropping within 3 minutes at my doctors so I didn't realize that I had this too. So today, I made and ate breakfast all the while feeling a little weaker, fuzzy headed and shakey the longer I was up. Then it hit me and I got the feeling like I had to lay down. I could only breath thru my mouth at that point. I stopped and took my bp and hr tho. Bp was ok but hr was 109. My resting heartrate runs 65 - 69. I laid down and took it again. My hr was 69. Out of curiosity, I stood up again and took it again. This time my hr was 103. Laid back down for a couple of minutes and it went right back down to 65. Once again I got up and my hr was 95. Ok, so to me this means that once i've reached the point of tachycardia, my heartrate will be high upon standing until my heart has actually recovered ... This substantiates why it takes me so long to recover physically and mentally from standing up too long. The people in my life, including my doctors, seemed to think that I would recover as son as I laid down. But this shows that my heart, etc. isn't recovering that quickly. I'm sure this is from hypoperfusion like dr peckerman explained.I'm still laying down waiting till I feel like I have recovered. I'll post my bp and hr upon standing rwhen I do. I posted this because i thought this might help some of you understand your symptoms too. Tc dEta. I felt better after an hour so I got up but I forgot to take my bp. Duh ... I sat and ate pumkin seeds loaded with salt for an hour. Then it happened again, tachycardia, so I had to lay back down. Hr was 103 before laying down.After laying down for 30 minutes, I got up again and retested my hr. It was 89. I still feel weak and fuzzy headed so this time, I'm waiting until I feel totally healthy at rest. It normally takes a minimum of one hour. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 16, 2011 Report Share Posted November 16, 2011 Interesting and hope you feel better. I guess I never really "recover" then because my HR always goes to 120-130 on standing or with exertion and can be anywhere between 50-100 sitting/lying. No matter when I stand it shoots up. Quote Link to comment Share on other sites More sharing options...
lissy Posted November 16, 2011 Report Share Posted November 16, 2011 Hello,Your post kinda confused me, I have been suffering for many years and my heart rate always rises upon standing, most of my episodes are not really contributed to my activity. I can go hours up right with a HR of 120's 130's and feel the same if I stayed laying most of the day...I have been evaluating my symptoms for years now and I know for sure when I lay down I am not recovering. I don't know what others will say but I can speak for myself I don't have episodes, my problem is pretty much chronic I have severe setbacks where its hard to do much of anything, and they last months and I have times I am more active which also last months but my vitals are always the same (high hr when standing) and my BP is almost always low besides certain times of my cycle or adrenaline rush. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 16, 2011 Author Report Share Posted November 16, 2011 Interesting and hope you feel better. I guess I never really "recover" then because my HR always goes to 120-130 on standing or with exertion and can be anywhere between 50-100 sitting/lying. No matter when I stand it shoots up.Hi anaphylaxing,Sorry to hear that. It's good that you know what's happening tho. You're not sitting there wondering why youweird ... Do you have to lay down immediately ?Not having to lay down immediately after standing up is my criteria for feeling recovered. I always light headed and a little weak within a few minutes of standing, but I can at least get some things done beforebeing forced to lay down again. I'm not usually this bad so I'm looking into what has changed. Are we having fun yet ? D Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 16, 2011 Author Report Share Posted November 16, 2011 Hello,Your post kinda confused me, I have been suffering for many years and my heart rate always rises upon standing, most of my episodes are not really contributed to my activity. I can go hours up right with a HR of 120's 130's and feel the same if I stayed laying most of the day...I have been evaluating my symptoms for years now and I know for sure when I lay down I am not recovering. I don't know what others will say but I can speak for myself I don't have episodes, my problem is pretty much chronic I have severe setbacks where its hard to do much of anything, and they last months and I have times I am more active which also last months but my vitals are always the same (high hr when standing) and my BP is almost always low besides certain times of my cycle or adrenaline rush.Hi lissy,I am always amazed here when we start talking specifically about our symptoms and how differentwe are. That's interesting that you can function at a higher heart rate. Maybe, I'm looking at this wrong.This is my first time trying to understand why I can't sit or stand like I normally would without feeling this wiped out.The only time my hr has been that high was when I was excercising and checking it because I wasbreathing too heavy to continue. My head gets too fuzzy for me to function if I'm so windedThat I gave to breath through my mouth. I have petite mals, brain stops, so I can't push this. Hmmm, are you getting winded ? Maybe that's my problem.... I have lung scarring too. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 21, 2011 Author Report Share Posted November 21, 2011 I should have titled this "Dysautonomia and feeling like crap when upright " ...I keep trying to narrow down these horrible light headed, wish I could faint so I could lay down feelings that I've been having for the last 22 years. Now that I have a bp/hr cuff i'm hoping I can.Today I experimented with what happens if I just sit still for as long as I can. I was well fed so i laid down for over hour to get my bp and hr stabilized from being up to make breakfast, etc. I appear to feel ok for 15 - 30 minutes upright at this point. At 45 - 60 minutes I start getting winded, have to mouth breath and can't think .. I have to lay down.While laying down, my hr was 63 my bp was 108 \ 82 and I felt totally healthy.Then I sat up ...at 2 minutes my hr was 70 and bp was 109 / 83 and I felt ok but not healthy.at 5 minutes my hr was 70 and bp was 116 / 87 and I was light headed ready to lay down.at 13 minutes my hr was 72 and bp was 110 / 79 and I felt good again.at 25 minutes my hr was 77 and bp was 108 / 82 and I was lightheaded again.at 45 minutes my hr was 75 and bp was 109 / 76 and I felt sickly, headache, body aches.at 50 minutes my hr was 77 and bp was 112 / 84 and I'd started mouth breathing and had petite mal.I had to lay down ... I'm not sure what this means. It's this first time I've tried evaluating why I can't sit or stand for very long ...These are all acceptable numbers so a doctor would have no idea that I was in distress. It looks like hypoperfusion (dr peckerman) affects me even when my hr and bp are within normal range. My worst symptoms are having a petite mal and mouth breathing / sob. Now that I've done this a few times, I know that it will take me an hour to recover from this. Any ideas on how to stop this from happening or reduce my recovery time ? .. Thanks ..dPs. Obviously the pantethine isn't helping yet. Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 22, 2011 Report Share Posted November 22, 2011 Perhaps I'm just too "foggy" right now to understand this.What do you mean by recovery time?With me, I rarely have a standing heart rate below 120, but it usually hovers around 150. Aside from actually feeling my heart beating faster and harder, I don't feel the difference whether my HR is 120 or 180. I can't really stand for longer than 1-2 minutes without feeling symptomatic, doesn't matter how long I have been lying or sitting. I'm not so sure that (at least for me) my HR has much to do with how symptomatic I feel. I can feel like crap and faint with a HR of 120, and can feel "good" at a HR of 190 and vice versa. I'm with lissy, no episodes, it's just how it always is. If I'm standing, my HR is up. The only episodes that I have are BP related. I do, however, have bad flare ups.POTS is just weird haha. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 22, 2011 Author Report Share Posted November 22, 2011 That's interesting that you and lissy aren't noticing other symptoms when your heart rate increases. By recovery time, I mean how long it takes me to recover from the petite mal and sob. I can't stnd or sit without feeling horrible again until i've recovered. My hr and bp normalize quicker than my body does from the other symptoms. I've noticed before that it takesme an hour ir longer to recover from a petite mal. I just hadn't figured out that was what was happening. I think the problem is that I'm having petite mals and extreme sob, must mouth breath, upon sitting or standing. So, I haven't figured out if my dysautonomia is causing this or if the sob and petite mals are causin the hr increase. This experiment may mean that my pots may be from seizures or poor lung function. I had assumedthat my pots was from my oh but it may not be. So I could do well on a seizure med .. It's worth a try since I have myoclonous too. Or I could try whatever would make my breathing easier. I have lung scarring ..Tc .. D Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 17, 2012 Author Report Share Posted January 17, 2012 This still puzzles me. I took a shower this morning and was forced to lay down afterwards.I was upright for about 30 minutes total. I notice that my body feels better initially uponlaying down. It feels like the blood is finally making it into my upper body so my veins andmuscles begin to relax.But, I get funny gurgling type feelings in my head, heart and lungs for at least an hour afterlaying down. I get that these organs have been deprived of blood and my blood vesselshave been constricted but I'm surprised that I can feel it so well. I just needed to say this because I know some of you will understand this whereas others would think I'd lost it .. Tc .. D Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted January 17, 2012 Report Share Posted January 17, 2012 I understand what you mean because I feel better after sitting or lying down and my heart rate goes back to 80's. I usually function with a 120-130 heart rate upon standing because I do not want to be on betablockers unless I need to because they make me soo tired. When I do have bad episodes my heart rate goes up even higher and that is when I end up in bed most of the day. I try not to test my numbers that frequently only when I am feeling really bad because I think I can psych myself out when I read my pulse is so high. As long as I am functional it is not that big a deal. Showers are the worst I think because of the heat and I often need to rest after one too. The numbers you gave look good though so I wonder if your symptoms could be due to something else or a contributing factor? Anyway, good luck with your measurements. I would try doing these at different times of the day too like morning and night and see if you feel any difference.Also, I should mention that my blood pressure is stabilizing and even running a little high lately. I notice that when it runs low, I feel like crap regardless of my heart rate. I tend to feel better when my blood pressure is not so erratic. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 17, 2012 Author Report Share Posted January 17, 2012 Thanks jackie,I was having a *** moment and needed to vent. I've been having far too many *** moments latelyand it's getting to me .. I have to get out and run errands today.Good point on timing too. I'll switch to nighttime baths and see how I do. Sorry to year that you're struggling too. We're seeing some impressive research, from members here too, but no cure yet. You reminded me that I still need to salt load to keep my bp up. I'll take 1000 mg in a minute and see if it helps. My petite mals and sob are causing part of my symptoms too. I didn't have sob today,just a feeling like all the blood had left my upper body all at once. It.s like someone pulled the plug .. Lol ..Tc .. D Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 17, 2012 Report Share Posted January 17, 2012 I think it's amazing that laying down your HR goes into the 60's! Mine never ever gets that low. Sitting it is in the upper 80's and laying upper 70's.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 18, 2012 Report Share Posted January 18, 2012 I fluctuate between 100% bad to 70% bad - and it can take anywhere from a day to 14 months before I get out of a bad patch. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 18, 2012 Author Report Share Posted January 18, 2012 Hi julie,I'm not familiar with what's normal for heartrates. Is your's within the normal range too ? Is it possible that mine's lowerbecause of my age ? I'm 56 and post menopausal so a lot of things are slower now.Hi rama,This illness is a real pain that's for sure. I'm still trying to nail down my good vs bad days. fwiw, i was making steady progress, kow, until I got h pylori and parasites. I'd even been dating forthe first time in years .. The fact that I got both of these means my digestive tract is still weak tho.The h pylori and the treatment took a toll on me, but I'm coming back slowly but surely. It's goingto take awhile to get my gut ecology back to where it was. Hopefully, we got all the h pylori too.Tc .. DPs. Salt loading really helped yesterday. I forget to keep my salt intake up sometimes then wonder why I feel so bad .. .. Duh .. I'm only using 2500 - 3500 mg a day but because my diet is allnatural I have to work at getting this. Quote Link to comment Share on other sites More sharing options...
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