I Just Want To Understand

[runningshoe]

Pots is so confusing and I read and reread the info on this and other websites just to make sense of all the symptoms. Now I am trying to understand the mechanisms that take place. I feel like I have so many questions. Is it our hormones, brains, nerves etc. I know for everyone it is different but I want to know why I have pots and where it came from. How can I be prepared for what will come next if I don't know the cause? Do you guys struggle with this? Just when I think I understand things, symptoms change and I feel lost again. Right now I really want to know why we can feel "potsy" even when our hr and bp are not misbehaving. I wrestle with that. I think I should feel better because I am not having tachy. Today I had no observed tachy but I am tired and nauseous. Is it that the meds are controlling everything but the mechanism is still occuring? My hr is being controlled but my nervous system is still screwy?

If you understand this better than me (and that won't be hard to achieve) please help me make more sense of it. Pots is a lonely place to be when you can't even comfort yourself because you don't know what is going on.

Thank you.

Lina

[flop]

Lina, I think most POTS doctors would love to know the answers to your questions. There are theories but as far as I am aware no-one actually knows the exact mechanisms of POTS. More medical research is desperately needed for dysautonomia but it isn't a high profile condition and doesn't attract much funding so progress is slow. I know how frustrated you must feel - I hate not knowing the answer to anything, sepecially health issues.

Flop

[Tammy]

Lina,

I have been struggling with that exact thought recently. I keep telling myself that I know it's real and all the crazy symptoms, but sometimes I'm afraid that if I talk about what I'm physically feeling, it sounds almost as if I'm a hypocondriac! Very frustrating to say the least and I've come to the conclusion that even though which symptoms are going to be more prevailant one day and then some others more so on a different day change, it's still comes down to something with my body is just really messed up! I'll get these spells where I'm positive that if I take my blood pressure and hr, it will show what's up, but many times it can be my normal low bp/hr as when I'm having an okay hour during the day... makes no sense at all, but it just is what it is. If only our bodies came with sensor codes that when malfunctioning would spit out data that would pinpoint the problem and also the solution to the problem. I sometimes wonder how when I get a cut or scratch, my body knows how to heal the sore spot with a little time, but yet I don't understand why it can't figure out how to fix itself with POTS.

[Guest tearose]

oh my, you want to understand?

Hey lina, first, you are not alone. For many people and many years, the answers are not complete. This is a field that is still being studied and there are questions as to what comes first...

Here is my summary from my many years and years of trying to understand, hope it helps.

In my body...

The small nerve fibers called baroreceptor reflexes...are not very strong. These are the nerves that constrict to help regulate my blood pressure. When I stand up, these nerves try to squeeze my blood to my brain and organs but then they are unsuccessful and my blood pressure drops over several minutes and then, in desperate measures to get blood and oxygen to brain and organs, my body starts to pump large amounts of norepinepherine and this makes my heart beat faster and harder until the blood and oxygen is where it is suppose to be.

The mechanisms can be different from person to person but in me, I am having a normal response to an abnormal condition. My body is desperately trying to sustain me and is trying to compensate. My body works hard every day, every moment to find a balance.

It can be a dangerous thing if I don't manage so I have done many things to compensate.

I sit, lay down, cross my legs, tighten my abdomen, drink electrolytes and water, wear compression....some people can take medications, I can not.

So, now to understand why we feel horrible when we "should" feel okay...

Think of those nerve fibers as hundereds of thousands of little muscle cells.

When you lift a heavy object and hold it for a while, don't you feel the "ache or burn" in your muscles after a few minutes?

You will feel the pain before you are so tired that you drop the heavy objects, right?

Think of your body as having the "ache and burn" of all the compensating it is doing all day, every hour, every moment....

Those little muscle cells/ nerve fibers, are early warning signs of an impending problem too....take time to rest and try to learn how to exercise those little fibers without wearing them out and letting them drop the heavy object which is our whole body.

I think it has been helpful to work on managing the symptoms even if the first cause is still illusive.

Someday... the scientists, researchers and doctors will understand the big picture, for now, we keep working on the little pieces.

Wishing you some peace with all you are trying to figure out..

best regards,

tearose

[masumeh]

How long have you had the disease/symptoms?

I think it is interesting to track out a common development pathway of the psychological phases patients with POTS go through as they enter the world of chronic illness, adjust to diagnosis, and then adjust their lives and self-concepts around this added life challenge. Might not be possible...maybe there's no universal pathway to psychologically absorbing this kind of change...but maybe there is?

"Why?" (sometimes taking the form of medial etiology questions rather than spiritual or existential "why"s) seems to be a part of the process. But I think when the mystery of the symptoms and phenomonological side wear out, then "why" matters less and less. I mean, once you know the course of the illness, and learn to cope day to day, it just doesn't matter how you got the disease (as long as you cannot pass it on to others).

But about the tachy and bp....I sometimes feel the worst, check my HR watch, and it's like a perfect 70! I used to get really puzzled, but then I realized (it took a year to figure this out) that I was swaying between tachy and brady. The bradychardia (slow HR, like drops below 60 beats per minute) feels MUCH worse than the tachychardia. The strange thing is that tachy will show up easily, but brady will not show up if I am moving. However, if I lay down and stay still (at those times only, not generally or all the time), it will show up (sometimes). For me, it can get as low as the 30's. With many experiences with it, I can tell by how it feels now, and also by the fact that the readings are unstable.

Other times when my HR and BP are not very affected, it can be a food allergy reaction. When I started having POTS, I was not aware of having food allergies. But over the years, I realized that I was avoiding certain foods, without much consciousness--and when I was forced to eat them (as in while traveling or when meals are not under my control), I would feel more POTSy, sometimes have full blown episodes around half an hour after the meal. Again, for me, the food allergies cause low hr, rather than tachy.

This disease is so very complex....it takes a long time to feel like you know your own body again.

[runningshoe]

Thank you for your thoughtful responses. I am coming up on my one year anniversary of the "lights going out" while driving my car. I think anniversarys are always hard. I know that at my one year hyster anniversary I was very sad for a few days. I guess my drive to understand is not because the symptoms aren't managed, but because I fear for what else might be waiting in the wings. Menopause, a return of Interstitial cystitis and the pots all "got me" in the course of a few months. I worry about what is next. I have already had two lumpectomies (benign) and have had hypertension since I was 34. I want to help my body heal and I believe all these things are intertwined and I just want to get untangled. I can go for weeks not think these thoughts but they always resurface and I try to re- think what might have happened. I don't question, "why me." I am grateful that it is me and not my husband (bread winner) or my children. I am reading Jerome Groopman's book the Anatomy of Hope. Most days I am positive and realize that compared to many I am healthy. I have been able to return to work (very very partime), can walk a couple of miles, and keep up with most of my kids activities. I couldn't do that last year and I am thankful that I can. I still have to nap everyday and crawl into bed very early but I know it could be so much worse. Pots is always there, like a shadow. I know you all understand that! I hope everyone has a good day.....

Lina

[ajw4790]

Yeah, I think it is more than difficult to understand. A lot due to that there are likely many causes/mechanisms that can manifest in numerous ways. So, i try to focus more on for myself what things bring on particular symptoms and work on it that way. Also, try just about everything under the sun, and see if it works or doesn't work. But, it is important to make educated decisions. Because, my drs. sometimes would want to start three new meds all at once etc. Which I definitly do not want to endure all at once!

Good Luck!!!