Do Your Pots Symptoms Scare You?

[Lemons2lemonade]

Hi! I was just wondering if any one else ever gets frightened by their symptoms. I feel goofy asking this and you would think that after a year of this I would be used to it by now, but still every time the presyncope comes on I am absolutely terrified (it takes every bit of will in me not to panic). I've never died before but I imagine that what we go through is very similar to the actual experience i.e losing blood pressure. Also, when you feel the syncope coming on do you try and fight it or just wait back and let it run its course? Can you die from this? Has anyone ever died from this??

[maggie]

Please don't feel it's wrong to be afraid when it comes to dealing with health issues. We all are afraid of things we don't understand that are happening to us here. I have had pots six years and still find there are times when I feel afraid, wondering is this going to get worse, will it ever get better. I want to tell you I'm at a point that I am improving and that is scary. I asked my doctor and he agreed that after six years of being ill, improving would be difficult as well. One finally excepts life the way it is and that bang, it changes again. I think we are all trying to learn to take it a day at a time here, but it doesn't come easy and we have to keep learning this every day. I can't tell you what others have experienced here but when my appendix ruptured two years ago I flat lined from too much pain med and it took three weeks of intense meds to get rid of all the infection in my body. I could have died and at the time I was so sick I didn't even realize that this could happen. I do believe that when it's your time to leave this earth, if you have faith, that will carry you through those doors. That's only my opinion and I hope I haven't offended anyone here on this site by these words. I don't believe you will die from any procedure that you might be facing, even though it truely feels like it. I hope all goes well for you.

Maggie

[MomtoGiuliana]

I understand your feelings and I agree that symptoms of dysautonomia can be scary. What condition/syndrome have you been diagnosed with? Most dysautonomia, eg POTS/OI/NMH, etc. is not progressive/fatal.

[surfgirl14]

Thats actually a really good question. I have been wondering that myself. It seems like from all the stuff we go through and the blood pressure drops etc. that this could be life threatning and always wondered if you could die from this. I was told that you can't die from it and it is not life threatning. But I have a hard time believing this considering hearing all of the stories of people. Also Yes I do get sooo scared with my symptoms. This is something my doctors have been working with me on. They tell me no matter how high my heart rate gets or how low my BP gets not to worry cuz POTS is not life-threatning. Again I find tht hard to believe but I try not to worry. It is hard not to worry though. I def worry a lot when it comes to my POTS. Hope this helps a little. Wish you all the best.

[MomtoGiuliana]

If it is any comfort, I have been on this forum since 2003. Many very sick forum users have used/are using DINET. I am not aware of any of them passing away due to the non-fatal dysautonomias, despite many cases of severe disability.

[mully2014]

I was wondering if it will shorten our life spans because our hearts having to work sooo hard all of the time. I don't think directly anything has been confirmed of someone dying from it but I wonder if indirectly it can.

I know that when I have a new symptom it can be very scary. Especially when I would even be laying down and I would faint.

[jenglynn]

It is very normal to have these fears, especially with the BP drops, tachycardia and syncope. It IS scary. And it is something we can't control for the most part. I have no warning anymore for my syncope and I just fall and drop wherever and have had several head injuries. That is always my biggest fear. I will faint and hit my head on the wrong thing or the wrong place and I could die. One incident was a pretty close call and have had way too many concussions. I could be an NFL player

But as everyone else has said, P.O.T.S in itself is not fatal but the symptoms sure feel like they are, don't they? Maybe you can talk to someone about these fears and set up some safety plans to deal with your syncope to ease your mind. If this helps at all, most of the doctors have told me (and I am saying they know what they are talking about lol) that the tachycardia is not a worrisome symptom but the heart doing what it needs to do in response to the BP and blood pooling. Many athletes get high heart rates. I have been told this numerous times but I still constantly monitor my heart rate and worry when I see it double, triple or more. It FEELS scary!!! I want to give you a big hug because I relate to your fear. You are not alone, though sometimes it seems that way. This forum is so supportive and helpful.

[MomtoGiuliana]

Sustained, severe tachycardia can damage the heart. I don't know how this would be defined but I know it is one reason hyperthyroidism needs to be treated, for example. Most POTS patients do not have sustained tachycardia eg it goes down when we sit or lie down, especially when we sleep.

[fiona-jane]

i dont get so scared now i have the diagnosis (before it i was very scared by everything, even the small symptoms as i had no clue what it was) but i still get rather concerned about symptoms that are bigger than i usually get (or symptoms that last longer than usual episodes).

for me, i find that information calms me down so i have a blood pressure monitor and a little pulse ox machine that goes on my finger and tells me what my heart rate and blood oxygenation rates are. when i have an episode i check my heart rate and if its still within my safe limits i calm down as i know i'm not in danger. i read up on all the info i could find about PoTS so know many little self help techniques (eg drinking approx 250ml of water in one go to push up blood pressure, doing the valsalver manoeuvre to stop my palpitations and slow down my heart, eating lots of salt and drinking lots of water, laying down when heart rate starts to rise above normal and/or i get dizzy etc) so i'm calmer than i used to be cos i can at least attempt to do something to help rather than sitting worrying about it. actively trying to help the problem seems to distract me enough that i dont worry so much

my pulse ox machine is the biggest help to me in keeping me calm- often it feels like my heart is racing but when i check it it's rarely as high as i expect it to be, and if it is high i know to lay down and so i often treat the problem before the symptoms get really bad. they;re only cheep to buy and mine is on a lanyard so i can hang it round my neck when i'm out and about (unless it's raining heavily) and can check my heart rate real quick- takes just a few seconds. and seems to encourage people to ask me about my condition and so i find i educate people about PoTS more than ever these days!

fi xx

[songcanary]

A pulse ox on a lanyard? I want one! Fiona Jane, as always I have learned something today .

[gertie]

I've been dealing with this for over 35 years & I still panic probably more than I did when I was younger. Neurologist told me not to worry about it. I have learned as I've gotten older it is more dangerous now because if I had a fall at my age I might not recover. Heart failure is another concern. When I feel the pre syncope if I'm sitting I put my head down, if standing I try to get seated before fainting. I have had some bad falls & bumps on the head. I don't worry about dying I just want to stay conscious & not have anymore head injuries.

[Lemons2lemonade]

Fiona, that is so interesting about your pulse ox and np cuff, I do exactly the same thing. I think of it as my way of keeping my brain in check. It thinks I'm dying the pulse ox tells me I'm not. Does anyone else use these methods?

[L4UR3N]

I definitely worry, and I think it is normal to worry. It's your health and your life afterall! I dont think any of us would be here if we weren't worried .

There are some things to legitimately worry about--hitting your head or other bodily injury when you pass out, ongoing tachycardia which can lead to many problems down the road, the silent effects of hypertension (depending on what type you have), other co-morbidities that may lead to poor outcomes, and arrhythmias. However worrying will not change any of these, and in some cases might actually make things worse.

Try to focus a little bit each day on something positive in your life--it can be anything! Be thankful for each day that you have, and the functionality that you DO have. It's very hard to focus on positive things when we feel so yucky all the time, but it can really change your outlook on life !

[misstraci]

I stay scared daily because it seems as though my symptoms never subside, they are always right there or there is a new one or a new strength of a symptom, etc. If only we could know the extent of our individual ailment and know for a fact that nothing bad were going to happen, I think I could have ease of mind. I'm scared of the unknown and the unknown is what is happening to my body. It feels like your heart drops, head spins, vision blacks out, hearing going, everything around you is fading out, I just think ... what in the world is happening, why does this keep happening, will this ever go away, is it really JUST "POTS" or is there more to it. I am scared of dying and leaving my family, I don't want to be forgotten or replaced, I don't want them to be burdened by the loss of me, no second income, etc etc. That is totally thinking negatively but it's true and I can't help but think these things when I feel as terrible as I do, so, yes, I think about those things as well.

[Katybug]

I often feel scared when my symptoms are severe or I have a new one I've never had before. I think it's normal to be scared when you feel like your having a heart attack and a stroke all at the same time...racing heart, chest pain, shortness of breath, nausea, slurred speech, dizzy...These are the things that they tell most people to go to the emergency room for. I think we should all give ourselves a pat on the back that we remain as calm as we do with all these crazy things happening to us. That being said, I do think this is like most things in that time eases the fear to some extent. Things that scared me 6 months ago are not nearly as scary now because I am used to them and because I have learned to gauge the severity of what's going on because I've been living with it. Hang in there!