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Wanted To Share My Video Of My Heart Rate With Pots


jrlehnardt
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Here is a link to my video clip of me showing what pots does to my heart from laying down to standing and then slowly walking up stairs and laying back down. Just thought it would be helpful for others. Also if anyone has any tips on lowering heart rate as i have not has success with beta blocker as they lower my BP too low and only lowering heart 10 beats. Also no luck with florinef. I also drink 3 litres of propel a day and increase my salt. Any ideas of any other meds to try or something else, as I am worse than I was in this video ( this was taped probably 6 months ago).

http://www.youtube.com/watch?v=I0j3yi33Thc&sns=em

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wow, looks like how mine does. I am on florinef 0.2mg twice a day, and waist high 30-40mmhg compression stockings. I didn't think they helped anything besides my BP go up a little, because wearing them my HR would still spike about 40BPM just upon standing and being still, until I wasn't able to wear them today and i couldn't do much because it would spike just like yours, and i would be jittery my hands shake and veins hurt, and definitely out of breath. if you don't use them already, I would give them a try they are uncomfortable I won't lie but they do help some. I would give em a shot. I get mine from www.ameswalker.com, but in order to do anything they have to be 30-40mmhg and waist high. The ones i have are about $35 so very affordable. I would try them..

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Yes mine will go over 200 if I am standing longer than 5 mins. I have never tried ivabradine, I will talk to my new docs about it. I have not really been treated as my family doctor has been the only helpful doctor and willing to learn, so he has tried me on midodrine, florinef, had me increase my salt and fluids but he has sent me to cardio, neuro, and the cardio just want to kepp putting me on beta blocker and the neuro has done nothing and unwilling to learn about pots. My husband is military and the military docs sometimes are worse in my experience, so I am now being referred out to civilians so hopefully I will start being treated soon. When my heart rate is 180+ I do feel out of breath but i am so used to it that I still just keep functioning. Really it is when I stand to quickly and get lightheaded or dizzy that I have a harder time functioning . I do try to sit as quickly as i can so it is only 120-140s when i sit. I used to get worse headaches but with drinking plenty of fluids and not getting dehydrated those are less. Florinef only made my hands and feet colder than they already are and I didn't see any improvement with anything. Beta blocker have dropped my bp too low. I think I have had pots since i was young as I never could tolerate heat and i would always get lightheaded and dizzy upon standing and my legs would always be purple and splotchy when standing. But the heart rate and full onset of pots did not happen till I had a hysterectomy and cystocele after I had my 5th child 6 years ago. After I woke up from the surgery my heart would always race upon standing. I thought I was just recovering slowly from my surgery since i had been on be rest for 3 months prior. Well finally at 8 months post op I just pushed myself to be up out of bed more than in bed. Finally saw a doctor 1.5 into it and after all my labs came back normal except that I had prediabetic blood glucose sugar levels. So after no arythmias and echo showing up because my heart rate would be 60 when I would lay for my echo, doctor decide it was stress because of having 5 kids, lol. So stopped seeing doctors for awhile and just dealt. Well my husband was getting ready to deploy and he wanted me to see doctors to get answers, well only thing lab wise that was wrong was that at 28 I was in menopause, so after months of them not figuring anything out they said it was depression. So again stopped seeing doctors for awhile. And pushed myself to work out 6 days a week which I think helped but also hurt because I was overdoing myself and I didn't know it. I at this point was having major massive headaches daily. Saw physical therapy as my neck was protruding forward and my scapulas were winging out. Still fast heart but just ignored it because I was used to hiding it from people so when i was out of breath I would try to breath really quiet, etc... as no one in my family knew I was stuck in bed at home with massive headaches, muscle pains, and a fast heart rate and lightheadedness except my husband and kids. Well after my husband got home from deployment my body gave in completely. I was in bed 24/7 not cooking, grocery shopping, taking care of my kids, anything, then we had to do a cross country move because of the military which was awful on my body . So started seeing doctors and after finding on the internet pots,eds symptoms that matched me completely I brought it up to my doctor. He agreed andchecked my hr and BP with laying standing and sitting, he thought I had pots, but referred me to a cardiologist . Well after months of fighting and finally complaining to patient advocacy the cardiologist did a tilt table test. His reasoning was that I had sinus tachycardia and he would treat it with beta blocker anyway and that pots really wasn't real. So got my dx about8 months ago. Well my norepinephrine levels have been high for the last 6 months, and my BP that has always been low is now high and low in the same day, like 96/56 and then 147/93. So they can't really put me on a beta blocker as when my BP is low it drops it too low. Since my norepinephrine levels have been high I have had problems with anxiety episodes and seating profusely where I used to never sweat before but the biggest problem is my heart rate that used to go down to 60 when laying never goes below like 80 when sleeping and where when I stand it would be in the 160s it has been 200+ for the last 2 years. Doctors think maybe a rare tumor pheochromocytoma since my norepinephrine levels are high but endocrinologist doesn't think so as it is a "rare" tumor. He say yes I have all the symptoms of this tumor and my levels are elevated but not high enough to diagnose this tumor but to say I don't have it because they r rare is ridiculous. So i am finally getting referred out to see civilian doctors so hopefully I will get more things figured out!! I know long but sorry, but this really is a brief summary, lol.

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Forgot to say, I feel like I have run a marathon. That is the best way i have learned to describe it. I do also get jittery at times and shake like tremor like. But my veins have never hurt or collapsed, interesting? Sorry for those of you that have that happen. I do drink 3 litres of propel and increase my salt and i take zofran for nauteousness and take hydrocoodone for pain. But i used to take others and tried others but i just got so much worse, so i am waiting til i feel stronger to try another Med.

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Sounds like what I go through as well, and have dealt with since childhood. I understand about the blood pressure changes

Your talking about, mine is the same it can be about 70/40 one min and 148/93 the next. The headaches from those changes alone are killer.

but I'm serious you may really benefit from the compression stockings, it is still hard to function because my hr. Might drop below 40 and then spike to 116 or higher but it is not as bad as it was. Without them mine will to from 40-160 a 120 bpm spike and that is only standing without moving for about 5 minutes so they have helped me a bit. But only alongside my florinef and salts. I think they may at least help some, it at least helps take some of the strain off of your heart by pushing the blood back up from lower extremeties. I get mine at www.ameswalker.com and find 30-40mmhg full waist.

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So it sounds like you have had a tilt test (you mention some specialised testing--not sure if you said this was done)? When I had severe POTS and finally had a tilt test that diagnosed it, my resting hr was 80 that day and it went to 160 simply on standing. HR as high as yours from mild exertion for me was "normal" but it would go right back down when I lay down (even as low as 70 but that would typically be PM only) just as you show in your video. For me I felt horrible with these HR values. I don't think it was the hr variation that made me feel badly it was whatever it is that makes the hr do this that made me feel so poorly. I would also get tremors like you mention.

Ultimately time and about 3 yrs on a low dose SSRI helped tremendously. Increasing fluids and salt helped me too in the shorter run.

I hope you feel better soon.

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Thanks, I will order so compression stocking now and give them a try. That's amazing that your heart rate goes that low, I wish mine would, I feel like if my heart rate would at least slow down below 80 while I slep I wouldn't be so worn out and maybe have some energy. Yes the only test I have done was a tilt table and normal blood labs to see if i had problems with thyroid, blood sugar, and vitamins or minerals and hormones. I haven't had any of the tests that like the mayo clinic do on pots patients. I am now getting ready to see new doctors. What are the tests, labs, etc that pots patients should have done, so i can ask them to do them??

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I used to think it was better when it went low but now I understand that just because i feel so comfortable,

I Am actually more fatigued because its too low, I start losing my motor skills at 34bpm. When it drops this low its like drifting into a coma, mine mimics a stroke and i also have temporary paralysis. I handle the higher hr better because I can lay down and possibly get it down but when its low like that and I stand most times it spikes but every so often I can stand and it stay low no matter what I do. Lol that is why they are so confused with me because my hr. Changes drastically it could spike too high when standing and cause me to faint and then while unconscious they say my heart stops temporarily kinda like sleep apnea. and my bp is just as fickle. Which is why they don't think I have pots but I don't know what else would cause part of my issues. Odd huh.. I hope the stockings help you. I know its hard with children I have two girls nine months and two years, I can imagine how it must be at your house, you are in my prayers.

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Thanks you are in mine as well. Wow I guess having to slow isn't a good thing either, that is alot to go through when that happens. Have they thought about putting like a pace maker or something that to jolt you awake. Maybe you have a heart problem that keeps it too low but then maybe you have high norepinephrine levels that gives you an adrenaline surge. Have they checked your hormone levels? Or maybe it is with the electrical part of our system that isn't working right so it will be both too low and too high. Ya I bet you confuse the doctors. I am sorry you have to deal with that. Yes it is difficult with kids, however my youngest is now almost 6 so they have been used to my health for years and they are getting older so it seems to get a little easier but also more difficult in some ways as they don't get to play outside as much and go do things like kids with healthy parents. But when my pots first started I had just had our 5th and i had 4 kids under the age of 4 and my oldest was almost 8. And I definitely needed a lot of help from family, friends, anyone that could help, lol.

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What is your BP? Propel may not be enough sodium to increase your BP.

Do you have sinus tachycardia or SVT? POTS is sinus tachycardia, but usually sinus oes not get that high. I hope you find good drs soon. Maybe try to find others on the forum that live in your area that can give you a recommendation.

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I would have to look exactly from my tilt ta le test what my BP does, I forgot at this point I believe the top number is low and my bottom number rises slightly. I will have to check. But i do have low bp most of the time as i get lightheaded and dizzy and see dark spots or tunnel vision because of it. I have sinus tachycardia. Ya when I first got pots it usually raised to like 150s 160s but for the last 2 years it has been like this video daily. I don't just get episodes this is all day long. I don't really kow what type of pots I have as I have only gone through a tilt table test. Growing up as a teen I would get lightheaded and dizzy upon standing and couldn't tolerate heat, but didn't have a problem with heart rate until after my 5th pregnancy and had to have a hysterectomy soon after. I woke up from surgery with it. But I also eds. But since i seemed to have symptoms as a teenager and have eds but it also started kind of suddenly after my pregnancy/surgery, so not sure which one. Also just in the last 6 months I started having high norepinephrine levels, sweating, flushing, and high BP as well as my typical low BP, which then seems more like the hyperadregenic . But from my first 4 years of having pots it didn't really fit the hyperadregenic type at all. But it seems as though there is more types and subtypes out there that i didn't know about when I had been dx, so I do need to read about them now since it seems like there is a lot more info on pots then I knew about

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