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Ernie
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Hi everyone,

I am sorry it took me the week-end to post the details but I was so out of it that I could only watch TV lying on the couch.

I am starting to feel more "normal" tonight.

The day started out hard because there was a big snowstorm. We got more tha 12 inches of snow. As we were driving to the hospital my wipers malfunctioned. The snow was too heavy for the motor of the wipers so it overheated. My friend had to get out of the car every corner or so to clean the windshield.

Then when we got to the hospital we learned that my doctor was also stuck in the traffic so he got in 2 hours late. They wanted to start the test without him and I said no, I'll wait. This was a repeat test which had to be done because the one I did last month was not properly done. I did not want to do it a 3rd time.

The inserted the IV line in my neck without any sedative or anesthetic (I am allergic to them). It was very painful and I had to ask for a break of 5 minutes because I was sweating all over from the pain. Then my specialist was able to insert it pretty fast but when I was upright there was no blood coming out for the blood sampling. So they had to insert an 8 inches wire in my neck and sew it in place so that it would not move. I felt like crying but I did not want to discourage them so I held my tears. My friend was looking at the "surgery" and her eyes were coming out of their socket. I did not want to ask any question because it was hard enough to control my pain and my body. I could not manage the details.

I was very cautious not to faint before the test because I did not want to reschedule again. So I kept asking for breaks so that my adrenaline level would decrease. They were really understanding about it.

So finally I got on the bicycle to have my test. Has I was straining I felt my heart would jump out of my chest. I was not paying too much attention to it until I heard the alarms go off. The nurse was worried and the specialist told me to continue to exercise. I was worried too because I was wondering if I was having a heart attack. So I was peddling but a little more slowly. Then they shut the alarm because it was stressing everyone in the lab (6). A minute after they open the system again the alarm when off again. I was wondering if it was a coincidence because I felt my heart coming of my chest again. So I was trying to figure out if I should stop exercising or continue. I did not have time to make my decision because I fainted right there. The nurse and doctor caught me and held me upright on the bicycle for another 6 minutes while I was unconscious. My friend was telling them to put me flat because I was not getting enough blood to my brain but they said I was OK. She was very stressed out because she was afraid I was going to die. After the 6 minutes of being upright and unconscious they carried me on the stretcher and I woke up with intense tremors and migraine headache. I did not know what had happened. My friend told me when we were in the car. I was so upset because I feel that they played with my life and my health. I am surprised that my brain is not fried!

The doctor told me that when the alarm went off my HR was 230 bpm. I was never told that I had such a fast HR. The specialist thinks that I have SVT but is not sure yet. He wants to consult with someone else.

I forgot to say that when the alarm was going off and the EKG was showing my HR = 230 they thought the machine was reading wrong. They had 2 different EKG and both of them were giving the same number. They only believed it when the nurse manually took my pulse and realized that it was for real.

The whole time I was kept upright while unconscious my HR stayed at 230 (for the whole 6 minutes). I hope I don't have any permanent damage.

I am afraid of doing tests now because I have never heard of a doctor keeping a patient upright when unconscious, especially when they know they have an orthostatic disorder. I don't know what to do next time to avoid being kept upright. My friend was in the room with me, pleading to put me down but they were not listening to her. What else can I do?

I was paralyzed for a total of 16 minutes. I think that I was paralyzed longer than usual because they kept me upright and my friend told me that as time was passing my tremors were intensifying.

Very scary experience!!!!!!!!!!!!!

Ernie

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Wow, Ernie. That is a very scary experience! I cannot believe you were kept upright for so long after fainting! That doesn't seem right at all. Was this a different specialist than the one you saw on Wednesday? I am amazed that you have the strength to type today after all that happened to you on Friday. Thanks for keeping us updated. What is even more amazing to me is how you endured the painful surgery on your neck with no anesthetic! You are so strong. Were they at least able to tell you anything helpful from this test or the other one? I'm glad that you made it through this week. I can't imagine how scary it must have been for you. I'm at least glad your friend was there to help you and keep an eye on how you were treated.

Kristen

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Hi Kristen,

Wednesday I saw a neurologist and Friday I saw a pulmologist.

It's really 6 minutes. I can't believe it myself but that's what the documents showed and my friend confirmed.

The only thing they told me so far was the SVT. I will see the specialist who ordered the test at the end of January. I am eager to find out.

I don't have any appointment with the specialist I saw on Wednesday. The hospital is suppose to call me to schedule an appointment.

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Wow, Ernie. I think that at this point, I wouldn't want any more tests. That is so irresponsible and crazy to keep you upright when you had fainted, knowing you have POTS. I can imagine you are exhausted and frustrated, so I wish you peace and a good night of sleep.

Amy

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Hi Amy,

That's exactly the way I felt when my friend told me that they kept me upright that long. I don't know if I want to do more tests. I have 2 more coming up in January where they will trigger fainting+paralysis again and I am wondering if I should trust those doctors.

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OMG ERNIE!! I am so sorry for what you had to go thru.. that is just horrible inhuman treatment! my god! and they arent going to see you until the end of january! :angry: OMG! oh that makes me so angry!!...in paralyse & syncope for 16 minutes.. my god.. did they atleast give you oxygen when they were holiding you up?? do you by chance know?

god bless you ernie.. I really hope that after all that they can help you...

hang in there.. i hope that you are feeling better this morning...

BIG HUGS TO YOU!

Linda

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Guest Julia59

Ernie,

I'm so sorry you had to deal with that during the testing. They should have known better---and not kept you upright so long. I don't blame you for not wanting to take the other two tests.

I'm kind of at a loss on what to say. You have been through so much already, I hate to see you go though the stress of more testing------but on the other hand this may help you find the answers to enable you to live a life with less disabling symptoms.

Blessings to you Ernie------my thoughts and prayers are with you.

Julie :0)

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Hi Ernie,

What an experience! :angry: Sometimes it seems like we are dealing with medicine from the dark ages up here. What were they doing leaving you upright for that long... was it a "let's see what happens if we prolong the faint" type of thing? Do you see this doctor for follow up again? If so, you should ask what exactly they were doing when you weren't laid down right away. Maybe it was to verify something or it was to try to check out something specific? Maybe to see if your heartrate would eventually drop?

Anyway, I am glad that you are OK and even more glad that your friend was there to support you. I hope you are feeling OK now and are resting up for the holidays! Laura

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Ernie,

I'm so sorry that you had such an ordeal! I can't imagine going through what you went through - the surgery, test, the fainting and then the paralysis, migraines and tremors. I hope you get some answers because this just doesn't sound like they treated you correctly - please keep us posted.

Thanks for sharing your story - I'm sure it took a lot of strength today!

Hang in here,

Lisa

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Hi Ernie, holy smokes you really were put through the ringer. Maybe if you have to have another test, you can put in writing that they must put you flat if you pass out? That's so strange that they didn't put you down--I would think it would be unsafe to have you upright if for no other reason than if someone lost their grip, you'd fall off. Strange.

I'm so glad that you did make it through and think you are very courageous. Nina

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Guest Belinda

Well that was certainly a nasty ordeal but luckily you made it through-but how horrifying.

I hope since it was at your expense that it helped them figure out what in the world is going on with your heart and everything else.

Glad you survived ..Belinda

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Ernie,

That is really scary. I mean we have all had our share of clueless doctors, but that really takes the cake! I can see how you might be reluctant to have more tests. Is there any way that you can find out your results from the neurologist before doing any more? I can see how you might want to go forward with the tests, because it does seem like you are close. Let us know when the rest of your tests are and what you decide to do. We're all rooting for you!

-Rita

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Hi,

Thank you very much for your support. I am starting to put it behind me and look ahead.

I just got scheduled for an appointment with my neurologist on March 14th. I guess that is when I will get the result of the Wednesday test. I should get the result of the Friday test on January 24th.

They kept me upright for so long because they wanted to know if my electrolytes would change. It seems that it did not change.

I am pretty sure I will continue with the other testing because I so want to know what causes the paralysis. The only test I had in 5 years were the ones I did at NIH and I am just starting to get tested in my country.

I don't know what is happening. Suddenly doctors find my case interesting. I might as well go for it.

They did not give me oxygen when I was upright. They were not measuring the cerebral blood flow. They either did not realize I was in distress or plainly ignored it. I think they were experimenting with my body. The specialist told me before the test that he only accepted to do the test for "scientific purposes". I felt hurt by his comment. At least I knew where he was standing.

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what a nightmare of irresponsability!!!! I suggest you have your friend - God Bless her- use a video camera at future tests. "just for research purposes". Another go like that and I'd call a lawyer!You are not a gunea pig! research is one thing , but that was the thinnest argument for medical care I've ever heard! My blood pressure is actually going thru the roof -for a change! Please take care and take names and videos! Have you ever wondered why nurses don't wear their name tags anymore so you can read them? I'm totally indignant at how you were treated!!

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Ernie,

I was thinking about this further, and was wondering whether you could lay some ground rules for further tests. For example, maybe you could get them to agree beforehand that they would stop the test if your HR goes above a certain level or your BP drops below a certain level, etc? Not sure it would work, but just a thought... :angry:

-Rita

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Guest Finrussak

Hi Ernie

Havent been online all that much lately due to a new meds protocol flattening me and dealing with my younger son's situation and my daughter traveling and older son supposed to be home but socializing...sigh juggling chain saws

anyway YOU never cease to amaze me with your courage and determination to see through any procedure that may help you or others!!!

But please take care of yourself and make sure every way you can that you are safe and your condition respected!!!

Hang in and I hope you continue to have strength in the face of your struggles!

Wishes for a very HEALTHY and Happy New Year to you and your family!

Finette

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Hi,

I thought I was safe having my friend in the lab during the test. She told them to lie me down but they said I was OK. She just shut up and did not know what else to do. She does not have much authority. Sometimes I think I should find someone who has authority and would protect me better. She is my best friend and takes good care of me but she does not know how to assert herself. She has no agressivity whatsoever.

We are very powerless when we are unconscious. Once I had signed a document specifying that I wanted no drugs during the procedure and they gave me some anyways and it made me very sick. The document dissappeared when I filed a complaint.

I am always afraid that when I do a TTT and the doctor does not realize that I am unconscious they will keep me upright. I never tought that a doctor who believes I am really sick would keep me upright. I just don't understand why it happened.

I agree that I have to have better controls to make sure that this won't happen again. I don't want to die for a stupid test. Especially knowing that I should not be kept upright!

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hi,

when a doctor is doing [spelling] sciecnctfic testing , your best interst IS NOT THERE TOP PERPIORITY.i have worked in hospils many years and have seen it way to many times.please waybefore your next test ask for a handout of what will be done exacly and what whey are trying to look for. a great resouse is to call your pots doc or doc you nurse you trust , explain the test and ask them what you should ask the testing doc to protct yourself.and ask all the aqus you can and what to. you come first.

god bless you,

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Hi,

They were taking blood draws every 2 minutes. I fainted when they were doing some of them. Then they waited another 2 minutes took some more, waited another 2 minutes and took some more (for a total of 4 vials while I ws unconsicous). Then they had to disconnect about 10 wires and other things before putting me flat so it took 6 minutes overall.

I will mention the fact the I want to be laid down ASAP to all my doctors. I am sure the next doctor will respect that because he does not want me to faint. I have to stand for 10 minutes for some other blood work. The problem is that when I start to feel faint I am paralyzed and cannot talk or move. My friend is there to tell them so that they can catch me.

Thanks for all your advice and caring.

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