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Scary incident, can anyone relate?


Goblin
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Hi everyone. I just need to share my story of the day. I have been feeling slightly better lately but especially today. I went to class this morning and felt fine, then decided to go shopping for a little while. I was just about to pay the cashier at the store when all of a sudden I got the pounding racing heart, short of breath, shaking, and felt like I was very close to passing out. I had to sit on the floor immediately and it passed, but it was very scary. I have only had this happen a few times. Does anybody else experience this? I find it to be very scary and I feel like I am having a heart attack. I also get extremely tired afterwards. Thanks everyone for listening, I just felt I had to share this with someone who would understand. -Stacey

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It sounds to me like you are having a panic attack... I know those panic attacks very well and they are extremely frightening. It happens to us because our systems are on the flight or fight mode and our sympathetic nervous system is giving out the wrong signal. Our body thinks there is danger and pours out adrenaline which in turn speeds our whole system up. It is very scary, but not dangerous. You just need to breath deeply and try and allow it to pass. I know it's very hard but it's better not trying to fight it.

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Boy, I can relate to those! Out of all the symptoms I get with POTS that is the worst for me. Once I have one I will be afraid for the next month and will get them regularly unless I take a quarter of my klonopin. When I have one I get up and walk around and concentrate on breathing it usually passes in about 15 minutes. If you start having more of these there is a good book by Edmund J. Bourne called the Anxiety & Phobia Workbook (3rd edition). It has helped me alot.

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I get this too, usually only when I've been doing too much on my feet for too long.

I really think they are caused more by being on your feet too long and having a low blood pressure moment or bad chemical moment than a true panic attack. I fight the notion that they are anything other than something going truly wrong in our body, not that we are scared or panicky. It is like our body is saying, you know what, I can't get the blood back up to your heart or brain too good anymore, you did me in, I'm gonna drop BP or pump some nasty chemicals to make you relax and get off your feet.

This is really a touchy subject for me and I get really ticked when anyone tells me it is just anxiety or panic attacks because I was sick for about 9 months before I got dx and there were several people that made that suggestion. I KNEW it wasn't. I was having one of the best days of my life shopping with my daughter recently and at the end, I got one of these. I wasn't the least bit anxious before this and I don't believe anxiety or panic caused it.

Just my thoughts on it. I just think it is something we have to watch out for and listen to our bodies and learn what our limitations are.

Having said all that, I don't think there is anything wrong with learning relaxation techniques or deep breathing because once one of these happens, you do feel panicky then and I think the best thing to do is get off your feet asap and then try and relax.

Sorry if I rambled - I am a bit PMSy today !!!

:blink:

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i have woken up out of a deep sleep with these kind of attacks, so i subscribe to the notion that it's not simply panic or anxiety (for me, anyway).

i think this is the worst and most frightening symptom of POTS.

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Hello again. Thank you for all of the replies!! I definutely relate to those of you that go against the panic notion. I went through many doctors before my true diagnosis that said that I had anxiety and I knew in my heart that they were wrong. I know that they are panic symptoms, but I think that it comes from doing too much and blood pressure fluctuations. Thank you all for understanding. It really makes me feel better knowing that I am not the only one experiencing these horrible symptoms. Take care everyone, -Stacey

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:blink: yep, I've sure had that happen. It used to happen to me everyday in the shower when I washed my hair, then when I tried to dry my hair (basically any time I put my hands over my head). It's happened to me at work, at the mall, pretty much anywhere I've had to stand more than a few minutes.

Nina

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I have had similar experiences while at the grocery store. Both episodes were when I was bending into the cart over and over again to put all of my items on the conveyor belt. The bending and straightening caused my heart to start racing and then I became very lightheaded like I was going to pass out. I've since learned not to bend all the way into the cart by putting smaller items in the seat portion of the cart. Good luck, sorry you had such a bad incident.

Lisa

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I used to fight the 'anxiety' theory tooth and nail until I realized that with many of my body's 'automatic' functions failing, I started to think maybe it wasn't so odd for me to experience a 'panic attack' without me actually being in a situation that would cause one in a healthy person.

I am very careful in relaying to my docs that I had an 'anxiety' attack, as this would simply fuel their theory that anxiety is the source of my symptoms and not a symptom in itself. Stacey - I hope you don't experience many more episodes like the one you described! Best,

-Dan

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I used to have these episodes at the grocery store a LOT but only when I was standing in line. I even started to dread going but then I started taking a folding sport seat (works like a cane folded) with me. When I get to the check out I unfold it and sit while I unload my groceries and pay. I haven't had any problem since I started using a few months ago. Once I got over the embarrassment of looking like an old lady with her chair, I found it much better than having to sit on the floor. I now take it everywhere!

I too, have had these episodes in the middle of the night and to me they are the most fightening.

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Hi guys!

Lots of different things can cause this type of episode, including sugar problems, and you should see a doctor.

Some people may experience a lot of anxiety and have symptoms such as these, but I personally don't think anxiety is the cause for everyone. I can walk up a couple of flights of stairs and induce these symptoms to a lesser degree. Our bodies pump out vasoconstricting catecholamines (the reason some of us have high norepi levels) to try to bring blood back to the upper body. It may make us experience symptoms similar to those of panic, but it is happening as a normal body response to not having enough blood in the heart and brain.

These symptoms may be happening in other patients for other reasons. There are so many things the doctors have yet to figure out. :blink:

Lisa, I've learned not to bend over shopping carts (or anything else) as well. Every time I bend over the sink to brush my teeth I can literally feel the blood filling up in my legs, and I can look down and watch my legs become more and more purple. They also become swollen looking. And if I stay in this position long enough I will start to get shaky. This position definitely increases the pooling of blood for me and I am hoping someone will do some research in this area soon.

Michelle

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Boy do I ever understand this feeling!! It has started to happen to me a lot lately, and I'm not sure why. And again, it's usually in the grocery store, which has caused me to dread going there. I feel like I am going to pass out all of a sudden, I get shaky and short of breath, breaking out in a cold sweat- always in line. It's horrible, and one time I also sat down on the floor in Food Lion, and I know the cashier thought I was crazy. I've started going to the grocery store more frequently so that I only have to pick up a few things at a time, and it seems to help. I've had to avoid shopping lately altogether unless it's necessary. My Mom is visiting this week from out of town, and it's been wonderful because she is running my "standing" errands for me. I tend to think that our bodies frightening responses to lack of blood flow & oxygen to the brain are the cause of the anxiety in this particular situation, not the other way around. I'm always feeling fine until it happens, and THEN the anxious feelings kick in. I'm so glad there are others out there who understand!!

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My husband had these problems for 3 years before he was diagnosed with POTS. Funny thing though, when they had him hooked up to a heart monitor, they noticed that when these "episodes" would happen he was having a heart arrhythmia. Now I know that heart problems aren't considered part of the POTS syndrome, but you might have a separate issue. I know for my husband, he has some heart problems that his cardiologist has told us the POTS will only exaggerate the symptoms. One of the symptoms that is associated with POTS are arrhythmias. B) I mean after all tachycardia is the T in POTS. There's a really good list of symptoms related to POTS @ Pots Place: A Guide to Postural Orthostatic Tachycardia Syndrome I too get really angry when it is suggested that it is a panic attack. Prior to my husband?s diagnosis, his heart problems went undiagnosed for years. It wasn't until this year that he's finally got some answers. I have finally found him an excellent cardiologist that is not only knowledgeable, but also willing to learn and research. I will tell you that due to the autonomic nervous system involvement, it heightens everything. :blink: I just don't like hearing someone say that it's anxiety because how many of "us" out there were told that before the diagnosis of POTS.

Just a little food for thought...my cousin complained of many sore throats for over a year. Due to the fact that she has 5 kids, the doctor told her that she was just "stressed out". Pawned the whole thing off on anxiety. A year later, and a different doctor, she found out that she has an allergy to dairy products. If a doctor can tell you that the reason you have a sore throat is because of anxiety, it sounds to me like it's just something to say when they don't really have an answer. My question is why did I pay you? ;) I could have stayed home & done a self-diagnosis.

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  • 2 weeks later...

Hi,

I'm new and I can't believe what I'm reading everything I've been feeling is normal for POTS pt's,I'm not going crazy!!! I was diagnosed in August two month's after all most passing out.My doctor was wonderful and would not give up until he figured it out.The brushing the teeth story really hit home that has been going on for years.I'm a nurse and I thought my problems were probably vascular.Quess I was wrong. This syndrome is horrible,I can hardly take of my two small children and I know my family gets so tired of me being sick all the time.This forum along with the ndrf forum have helped so much just knowing it's all real.Did any of you question yourself in the beginning?

Bethany

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OH Yes, I questioned myself until the day I took the tilt table test and saw the results (that, and the doctor's surprised expression as I completely lost diastolic pressure but was still conscious--felt sick as a dog though). Up until that time, my family doctor kept trying to convince me it was stress/my type "A" personality, Chronic Fatigue, Depression, yada yada yada. After a time, I started to think..."well, maybe he is right...?"

...But then I realized I didn't have anything but the physical signs of depression--I was not hopeless, in fact, I am an eternally hopeful person and i really WANTED to get out of bed but my body just wouldn't play along with my wishes. I told my doctor I thought he was wrong--that I was having a physical, not a psychological problem. At his urging, I went for TWO psychiatric evals, both said the same thing: physiological symptoms of depression, but as a result of chronic physical illness that had yet to be determined. Both the evaluators noted my hopeful attitude, and my will to plug along despite feeling so terrible every day. That was so validating, but it was still several years away from my ultimate diagnosis became apparent.

During those intervening years, I again doubted myself MANY times. Were it not for a friend to took me to the doctor and then to the TTT, I may have let the issue go for a while. As you all know, hunting for a good doctor (a good detective) is hard and tiring work.

Nina ;)

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Hi,

Thanks for your response.I feel lucky after hearing your story,I was diagnosed early,tjanks to a dr who wouldn't give up. He didnt even know me that well I just believe he's a great dr. My parents have also been my complete support system, my husband helps alot too,but so much has been placed on his shoulders. I haven't been able to work and the money situation,well I'm sure you all know.

Keep up with the hopeful attitude I know it's hard.

Bethany

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Just a follow-up on this post. I talked with my cardiologist after this event and he hooked me up with a cardiac event monitor. The readings from this showed that I had episodes of atrial tachycardia, which they are working on treating right now. The nurse I spoke to today assured me that no amount of anxiety can actually cause these episodes to happen. Just wanted to let everyone know the latest news. -Stacey

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Bethany- I too feel the same way as you, I was extremely lucky to be diagnosed within a month, thanks to my wonderful and persistent doctor. Getting better was the tricky part, but I feel very fortunate that I did not have to suffer un-diagnosed for very long. I also can sympathize with your feelings towards your family- my parents were very supportive, and my significant other had the world placed on his shoulders. It has been 2 years and he is still making ends meet for us, but now that we've added a little one to our family it is even ahrder on him. I am so grateful for my family who has helped see me through these trying times. Best of luck to you, I hope you see some improvement soon = )

And to Stacey- thanks for the follow up. That is an interesting observation by your doctor- what are they doing to treat this? I am just curious . . .

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bethany08xu,

I still think it's difficult to accept what's going on because other than the people on this forum (and some angelic doctors), many people still don't understand or believe how sick we are because we usually "look fine". That's part of the curse of this disability. It's not well known or understood.

Therefore, take whatever support you can from reading about others on this great forum and realize, "You are not alone". There are better days ahead.

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As far as treatment, more beta blocker is the best way to go. Since I can not tolerate it... and it does not seem to be working, I am going to start a medication called Verapamil on Friday. This is a calcium channel blocker that is also aimed at slowing heartrate. It also lowers bp though, like the beta blocker. I figure I'll give it a shot though.. maybe it will help. I increased the dosage of Toprol XL I was taking, but it did not help with heartrate. I'm hoping that this will give me some relief without too many side effects.

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