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Diagnosed with pots and scared


amanda
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My name is Amanda and I was diagnosed with pots disease this past summer, but the funny thing is is that i was missed diagnosed for 3 yrs with a particular disease called supervantricular sinus attackacardia, the electrical pathways of my heart were thought to be not working in a way the should to control a consistant heart rate, there for causing me to have pulpatations and lightheadeness. After my diagnoses of supervantricular sinus attackacardia, i was schedualed for surgery of April 2005. Waiting on the gerney preped for surgery, I waited for my doctor. After 3 hrs of waiting nervously, she called head of staff to tell them she couldn't make it for my surgery. I was mortified that she didn't show but it was kind of a blessing in disquise. The only test that surgon didn't do was the tilt table test, which proved to my new doctor now that i have pots. Im just hoping and praying that i could please talk to someone to help me comprehend better and cope with what im going through. No one has ever heard of pots and i feel alone.

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Hi Amanda ;) Welcome to the forums.

You are not alone! at least not in cyberspace, there are lots of us here all sharing similar journeys.

I am afraid i have not heard of supervantricular sinus attackacardia so i am not sure if its a good thing you dont have it or if you would prefer to have it. Alot of us on here get quite excited when we have abnormal lab results as it makes us feel like we have a better chance of treatment.

Has your dr put you on any medications or treatment programs? Has he/she explained it to you at all? There is lots of good information on this site, from explaining POTS to telling you what helps and what to avoid. Do you have any specific questions?

Im sorry but i may not be the best person for POTS advice as I dont personally have POTS, my bp just randomly drops and i faint plus i have cfs (chronic fatigue)type symptoms. so its similar but not quite the same. However there are lots of really well informed supportive POTS paitients here that im sure will be of help B)

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Hi Amanda if you are having trouble getting the hang of replying ... just click the add reply button at the very bottom of the screen (next to the new topic button) and dont worry about quoting (quoting can make things a litlte more confusing)

Forums can be a bit tricky at first ;)

Edited by Evie
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Ok so everyone here is amandas question:

QUOTE

the doctor gave me florinef, but i am scared to take it cause it can make you gain wieght and can mess around with other things in your body like your potassium, give you osteoperosis, ect... Symptoms from the pots sometimes come from out of nowhere.

here is my response:

Personally i take 150mcg a day and it has been the difference to me being able to do part time uni (full time next year) and to being bascially stuck at home. I have not put on weight with it, i am 52kg and 160cm so am fairly small in size.

Some cortisones do make you put on weight and are not the best to take however florinef is aparantly differnet to the others and is in minute doses. My drs check my potassium levels with blood tests to make sure they dont get low.

Everyone has differnet reactions to medicaitons, however most of us find florinef to be quite helpfull. If i go on larger doeses i feel quite irritated.. its just a matter of fixing the dose so its right for you

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so your on the florienef too? That makes me feel better to know that your doing just fine on it, Im only 5'1 and approx 110 pounds. So you don't exactely have pots but your similar to it? Do your symptoms come out of nowhere?

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You recieved a email as you sent me a PM (private message) and it automatically sends PM's to your email account.

Yep i am on florinef and my health situation is similar, looking back i have had trouble with bloodpressure and chemical sensitivity. However POTS like symptoms didnt kick in full time until i fell ill with glandular fever. Alot of people experience POTS post viral infections.

:)

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:) Welcome Amanda!

For years docs thought I had SVT also and I had an electrophysiologic study after twelve years to see if that was the case! (I presume this is what you meant when you said you were prepped for surgery?). Anyway, they discovered there was nothing wrong with the electrical pathways of my heart, I had the tilt table test and was diagnosed with POTS in January of this year. I tried lots of different drugs--all had yucky side-effects. Then three months ago the doc tried me on florinef. I was extremely reluctant to try it--like you, I didn't want the weight gain, I had enough ballast already! But three months into the drug, I haven't gained a pound and, like Evie, I feel so much better.

I really hope it works for you too. But if it doesn't, don't give up because there are other treatments that might work.

Best of luck,

India

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Hi amanda: I also am on Florinef, .5mg a day which is soon to be upped because

of my dizziness and blood pressure. I have not gained weight either. I don't have POTS but some POTS like symptoms. I have been diagnosed with pure autonomic failure and we are trying to regulate the pressure. It is quite difficult to work as a nurse in the hospital when you want to fall over all the time but I do because I have to. Terri

Edited by MightyMouse
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Hi Amanda

I am sorry to hear that you have been struck down with this nightmare condition too but you have definately come to the right place- there is loads of help here!!

Have you taken a look at the post from a few days ago titled Florinef? Actually I think there may of been two. (maybe someone a little more IT literate than me can post you a link????)

There were many questions and answers on there that may be worth a look at.

Anyway I hope you find these of use- if you have any other questions please feel free to ask!!

Take care

Katie x

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Good Morning Amanda,

You have come to the right place! I too thought that I was all alone in this. My diagnosis is not totally complete yet. I know that this site will not take away the disease, but I found out that I am not alone in this. Even though I am not talking face to face with all of these people, I know that they are there going through the same things that I am, or similar. I am still scared, sometimes I think that I am going to wake up from this nightmare some day. What I found that works better for me in coping, is one, get involved in your care. Do research, and meditate. If you do not understand what your Dr is telling you then ask him or her lots of questions. Try to find a Dr. that knows something about POTS or at least is willing to do research to learn. Imerse yourself in your family or something that will take your mind off of it at least temporarily. All of these suggestions may not help you, as sometimes they dont help me, but all we can do is try try try. See you in cyberspace. Sending you a great biiiig bear hug !!!

Hope today brings you peace. :)

Vanessa (theycallmemrsglass)

Edited by MightyMouse
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supervantricular sinus attackacardia

Do you mean supraventricular sinus tachycardia? "Tachycardia" just means fast heart rate. "Sinus" means that the heart rate is being regulated by the sinus node, which what is supposed to happen. The sinus node is a group of specialized heart cells that act as a pacemaker. "Supraventricular" means that the tachycardia is being regulated by some combination of activity from the sinus node and the atrioventricular (AV) node.

Here's a useful introduction to electrocardiography for nurses:

http://kabayim.com/ECG%20Basics.pdf#search...achycardia'

Notice that the sinus tachycardia tracing looks normal, but just speeded up. I think that this is pretty much what happens in most people with POTS, so the diagnosis of sinus tachycardia or supraventricular tachycardia is consistent with a diagnosis of POTS. The heart itself might be normal, but it might have to compensate for your body not having enough blood to go around. Or maybe you do have enough blood but it's staying in your legs when you stand up, so the amount that is returning to your heart is insufficient. Or maybe you have a problem with too much epinephrine. That's for the doctors to figure out. Most of these things are regulated by the autonomic nervous system, which is why POTS is generally considered to be a dysautonomia.

Your doctor should have explained all this to you. I think it would be best if they also give you something to take home to read, because it's often difficult to absorb information if you've just been through a tilt-table test.

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Welcome Amanda!

Another name for the arrythmia is inappropriate sinus tachycardia, which means the heart rate is too fast, but no one is sure why. I'm assuming they were going to do ablation on your heart?

I had it done. There are only a few cardiologists in my town that do ablations, but most of them agree it is a poor choice for POTS. It has to do with the heart compensating for blood flow leaving the head. It was a very bad thing for me, and even though I don't know your story, I think you will find most people here will agree. It either doesn't work or makes you worse.

This is a very unpredictible disease and problems come on very quickly with most of us, so don't feel like the lone ranger!!!

Welcome to the site and I hope you get some good info and lots of support. If it helps, no one where I live knows anything about it either. Very frustrating....morgan

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How come i was getting your responses in my msn e-mail? This whole forum thing is quite different.

Hi Amanda (pretty name!)

I'm on florinef and has made a big difference to me. I'm on 0.05 mg and in days I feel worse I can icnrease it to 0.1 or 0.15 mg. In regards to potassium and magnessium, yes it can cause some loss that can be treated with supplemets. Your dr needs to check your blood and avice you to how much you need to supplement. I have not gained weight. When people gain weight is due to water retention usually, as florinef is not cortisol is aldosterone, which is the hormone (also produced by your adrenals) that regulates water and salt balance. This is also why it's usually called the salt-steroid, and it makes your kidney to retain more salt in exchange for potassium and magnessium sometimes. In comparison to cortisol-steroids (such as prednisone) side effects are milder. I also experienced headaches at the beginning but went away after some time using it. But, for me, all of this is nothing compared to the good benefits I've experienced. i tried to stop it once for a test and couldn't tolerate it, my dr put me back on it without performing the test.

You may want to talk to your dr and start gradually if it makes you feel better.

Good luck!

Andrea

PS: BTW above explanation was given to me by my Dr who always takes the time to explain everything to me.

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Hi Amanda,

yep I'm a POTSy as I like to call it, but I have so many symptoms that I think I can't remember everything. That's the one that bothers me the most: my short time memory is getting worse! I'm using betablockers for tachycardia, mestinon for staying warm and other meds that I can't think of right now! Oh and I wear compression hose and am in my chair almost all day (feet up I mean, and back down as far as needed). Well, does this help you?

Corina :lol:

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Amanda, now you have the right diagnosis you are empowered. Imagine if you didn't know what it was. The most frightening thing in the world is not knowing. think of the wizard of oz- he seemed so terrifying to everyone...and when Dorothy finally sussed out who he was, and got to see for herself, she wasn't scared at all! :lol:

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I just wanted to say welcome, and that your not alone, here is one of the few place I find that people now whats it like to have POTS. Plus it nice to now there are others that feel the same way as I do. The thing that helps me the most is to know others have been where I am know and are doing much better now! :lol:

One day at Time!

Amy

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Welcome Amanda,

This is a great place for a wealth of information and support. My dr. here has not "labeled" me dysautonomic but after the run of tests over the years especialy this last year he tells me my heart is fine it is my nervous system. So there I am. Tachycardia when walking. A bit tachy when sitting and sometimes normal.

You are right it probably was a blessing in disquise that you did not have the ablation done. Everything I have read says that it can do more harm than good in people with pots, ist etc.

May I ask do you have other symptoms? Are you tachy when you stand, do you have low b/p or normal or high?

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