Pots And Fast Hr

[carinara]

Hello everybody!

I just got back from my italy holiday. It went all very well and much better than i thought. Iam so thankfull for that.

I noticed lately, that my body does correspondent differently to a upright position within the hours of a day. Where

My POTS is really bad in the mornings.(heart rate shooting up upon standing and so on), i feel i can control most of the symptoms more in during the day, because i know many of my triggers and try to avoid them as much as i

can.

Then when it comes to the evening hours i noticed that my HR sometimes stays normal when i get up and walk. But as longer i stand or walk around ( 5 to 15 minutes) the more dizzy and lightheaded i get. I have to sit down quick otherwise i get really ill.

I also noticed that sometimes my HR does shoot up but then after a few minutes it comes down again and the symptoms start. Sometimes when i sit down and wait until i feel better again, i can walk further for a little while and at other times it takes hours before i feel able to get up again. Iam diagnosed with POTS. But i also read that NMH and POTS go hand in hand with many POTS Patient. It feels like all the blood is

Getting out of my head, leaving me with lightheadness, dizziness, tiredness and sensivity to all kinds of things. I also noticed that my BP drops upon standing when i get like that.

When i get an episode like that, it feels like POTS Symptoms just without the fast HR.

Does anybody of you experience POTS symptoms but without the fast HR from time to time?

In my understanding the fast HR in POTS is because the heart is trying to compensate for the lossed blood into the lower body and legs. Is it possible that at times the heart doesnt try to compensate, the HR doesnt shoot up and at other times it does again?

I dont really have a good POTS doctor and i don't know if its necessary to have another Tilt Table Test done just to confirm NMH along with PoTS. It wouldnt make a difference anyway or would it? (i dont want to have another one) Most of the time my BP is to high whilst sitting or laying so iam not allowed to take any kind of medicine that make the BP higher.I do take a Beta Blocker wich helped me a lot with the tachy.

Do i have to get more into discovering whats happening to me in them sort of situations or can i just leave it and think of it as some other strange dysautonomia symptoms. To be honest i dont want to play all this doctor running around game anymore.

When i got diagnosed last summer at an autonomic section of a hospital, i did explain my symptomy to them. They did a few tests with me and after the TTT was positiv they said that my symptoms are all due to POTS .I was happy and relieved about finally having a diagnosis. But now, since i know so much more about PoTS it makes me wonder if them sort of symptoms i have at times, need to be looked further into?

I would really appreciate your opinions!

[carinara]

Sorry, i forgot to add a part of the article i have found about POTS and NMH:

What are NMH and POTS?

Neurally mediated hypotension refers to a drop in blood pressure that occurs after being upright. We define NMH by a drop in systolic BP of 25 mm Hg (compared to the BP

measured when the person is lying flat) during standing or upright tilt table testing. Although NMH may be slightly more common in people with a low resting blood pressure, most people who develop NMH during standing have a normal resting blood pressure. NMH is an abnormality in the regulation of blood pressure during upright posture. It occurs when too little blood circulates back to the heart when people are upright, and triggers an abnormal reflex interaction between the heart and the brain. NMH is sometimes known by the following names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. Syncope is the medical term for fainting.

Postural tachycardia syndrome refers to an exaggerated increase in heart rate with standing. A healthy individual usually has a slight increase in heart rate-by about 10-15 beats per minute--within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats per minute,

or if it reaches 120 beats per minute or higher over the first 10 minutes of standing. POTS is an abnormality in the regulation of heart rate, not necessarily in the resting heart itself. Some patients with POTS in the first 10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued; the two conditions often are found together, and they are not mutually exclusive diagnoses.

[pat57]

NMH is episodes of low HR and BP. I think you POTSers get low BP sometimes but still high (or normal) HR.

If you have episodes of low HR and BP , simultaneously, you might look into NMH.

[carinara]

Hi Pat57. Thanks for the information. Well my HR doesnt get really low in them sort of situations. Its just that the tachy doesnt kick in sometimes. My HR stays normal or gets a little higher but not extreme high like in the mornings or in other situations. Sometimes when i get up my HR gets really up and at other times it goes only a little up and comes down to normal again. But it doesnt get really low.

[mkoven]

I'm not sure for nmh that the rate has to slow, though it often does. I think it's the pressure. I appear to have both. Some less experienced cardiologists have told me that this is impossible--it's one or the other. Hmmm. Well, on my tilt I had both the requisite increase in rate and drop in pressure. I'm more aware of dropping pressure in daily life, but it's true that I"ve never actually passed out.

My pressure is rarely that high, so I take drugs to increase it--florinef and midodrine. But it seems that the goal for all of us is not to raise bp per se, but to stabilize it.

I"m no med expert, but I wonder about this too. I know that because of my ehlers danlos, I need to keep the pressure low-normal, but for my ans, it needs to be STABLE low-normal. I do find that if I don't take my meds, not only will my bp drop too low, it will be more likely to swing too high too. So in some sense, raising my bp through meds, stops it from overreacting and going too high.

I'm not thrilled with my med regime, though. It helps some, but not enough. I don't want to raise the midodrine, as it lowers my heart rate too much--into the 40s. And I don't really want to raise the florinef.

Would something like mestinon help you?

[HoudiniCat]

I?m glad you enjoyed your holiday.

I?ve had the low BP and high HR issues with POTS from the beginning. I?ve been feeling pretty good for the last few months but now notice that sometimes I get symptomatic (dizzy, fatigued, vision/hearing problems) even when my BP/HR are fine. Sometimes the HR will jump up quickly when I stand and then it seems to correct itself after a minute or two. Same with BP ? sometimes it will drop for a minute or two and then come back to normal. My POTS doc seemed to think this is all POTS-related. Last time in his office, I had no increased HR on standing (and no decrease in BP) and he told me I was getting better. I plan to ask him on my next visit why I still get the other symptoms then-if HR and BP are normal. Maybe this is all part of the healing process? I'd hate to think this is another issue and have to start more testing.

Did your BP drop on your original TTT? I would check into that. When I used to have BP drops upon standing/walking, sometimes drinking a big glass of water (or Gatorade) would help a little.

[carinara]

[quote name='HoudiniCat'

Than you everybody for your replies.

HoudiniCat, on my TTT my HR doubled up and my BP went from 135/90 to 149/102. The test 'only' lasted 50 sec. because i could tolerate it anymor my heart was trying to jump out of my chest and all my symtoms hit me with such a intensivity that i couldnt handle it any more. I would really be interested in what your doctor tells you when you ask him why you still get the other symptoms if your HR and BP are normal.

I would really appreciate it, if you would let me know later on.

carinara