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Major Flare, Long Hospital Stay


IceLizard

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Hi you all. I haven't been on in a little while, because I was stuck in the hospital. I had stayed home last Thursday because I was not feeling well. My heart woke me up from my nap beating at 200 bpm! I was very shaky and it felt like my heart rate would not come down, so I called paramedics because I was alone.

They were confused at first because when they knocked no one answered the (unlocked) door! I heard them talking among themselves: are you sure this is the right address? I skooted across the floor to open the door.

I was taken to the ER and given IV fluids. I was told to discontinue the Clonidine I had just started, so I removed the patch. After the fluids, the doc tried to sit me up, but my heart rate went up to 197 bpm. Then they tried it again while I was hooked up to an EKG and then I passed out. So, I was admitted.

Long story short, they played with my meds, at times making it worse and I had episodes of high heart rate/passing out/convulsions multiple times a day, some even while laying down trying to sleep. I often could not get up to use the bedside toilet had to use a bed pan (hate those).

They found that I am dependent on Florinef, but that it has to be coupled with a beta blocker. Florinef alone raises my heart rate. Beta blockers alone reduced my heart rate, but made me pass out more often.

I am at home now recovering, but I still cannot stand up straight yet without having an incident. I have to move around the house bent over. It's funny looking but it works. I have left my graduate program and now I am just trying to focus on getting some functionality back...

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In the ambulance my heart rate came down to about 120 bpm. Oxygen seemed to help me a lot. I don't know how long it stayed so high because I am out of it when it happens and lose track of time. I do know that it would spike really quickly, like going from 80 to 170 bpm in a few seconds. I would tense and have convulsions. During the convulsions it would climb higher, I think the highest it got was 203 bpm. After the convulsions it would slowly come back down to normal. Sometimes I would convulse for, I'm guessing, 10 minutes or more. And they can occur in bunches. I was given Ativan for the convulsions, but that didn't completely take them away and my heart rate was still very high. I think the thing that helped the most during those times was the oxygen. Most of the time if I am laying down it will resolve itself within a few minutes.

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Today is the first day I have not had an attack in over a week. I hope tomorrow will be the same.

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Thank you all for your support. Even though I do not know you personally, it helps to know that you all understand.

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I hope u have a better tomorrow! I've been at 200 before...its no fun!! So glad u had doctors that were able to help, when mine was that high I had an ignorant doc who said I was having an anxiety attack...he had never even heard of pots and refused to run any test!

Have u tried online classes? I'm in college as well and do both campus and online but I had to get my associates completely online since my symptoms were not controlled back then!

Best of wishes :)

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