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New and Scared


JP0324
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Hello!  Just a little background on me.  I am almost 33.  I was diagnosed in fall of 2016 with Chiari Malformation.   Then in October of 2017 I was diagnosed with POTS.  My cardiologist prescribed high salt diet, lots of fluid and Florinef.  I take 0.1 mg daily.  In the last week my heart rate was staying over 140's so cardio upped Florinef to 0.2mg.  The first day I did that, my blood pressure was way too high (196/168) I ended up going to the ER to only be told there is no way my machine is right.  Dr totally blew me off. Sent me home without doing anything.  Cardio told me the next day To go back to 0.1 mg Florinef and prescribe Propranolol (beta blocker).  I have not started the Propranolol yet because now I am the other end of the spectrum.  Blood pressure is running 96/60 and heart rate is averaging 60-65.  I am sick. All flu symptoms and fever but rapid flu test was negative.  I am supposed to see my cardiologist on Friday Feb 9th.  Any suggestions on what to ask for? Or what I should do?  My cardio is not very familiar with POTS and has referred me to Vanderbilt Clinic.  They are working on trying to sort out insurance and see if I am accepted.  I am just scared.  I have been having so much anxiety this week because of this.  There are nights I can't even go to sleep.  I have 3 kids and I can't even get up and enjoy things with them. 

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I suggest that you keep a log of BP/HR symptoms to show the cardiologist and the folks at Vanderbilt or elsewhere.  I’m three years into this and still keep records if I feel poorly or start new meds. The disease causes lots of fluctuations in BP/HR so try to not freak out too much unless the BP gets really high again.  My Drs say not to worry unless it gets over 180/110 but you should see what your cardiologist says. When I catch a virus my BP and HR go high so you are not alone.  Fludricortisone dosing is very tricky for me.  I take a half of a 0.1mg two days then a quarter tablet the next day.  It took me years to get this dose figured out and I still adjust as needed.  I strongly recommend getting to a POTS specialist,  cardiologist or neurologist.  Check out the main page of this site for a list.  

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I'm really sorry that you are going through this.  It sounds really scary.  The only thing I can say is that you have to be your own advocate.  I think it is really unacceptable that they dismissed you when you BP was so high.  Medications can have all kinds of effects, even opposite effects sometimes.  Your cardiologist is responsible for the medication he/she prescribes, especially if it caused your BP to get this high.  They have to work with you until you are feeling more stable!  

I am just sorry you are dealing with this.  Hope you are starting to feel a bit better now.

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Hi, JP0324!!  I don't have advice to give about medication or symptoms, as I am new to this myself.  But I wanted to send you a virtual hug.    ((JP0324))

I'm sorry you're having to go through POTS too.  I have anxiety about my POTS and the medications as well.  I try really hard to be proactive about the situation, and at times that has involved being pushy when people don't seem motivated to help.  If you don't have the strength to do that yourself, do you have someone you trust enough to permit them to act on your behalf?  I had to do that for my dad at times when he was sick.  He had to sign papers that said the doctors were allowed to bypass confidentiality when speaking with me.  It sounds like you're so ill at times that you may want to have someone do that for you.  Is there someone who can do that for you?  (Not every day, just when you're too sick to be tenacious on your own behalf.)

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I'm glad you have someone like that in your life.  It is so hard to have to deal with this stuff without that.

This may sound kind of lame, but one thing that has helped me relax is listening to guided meditations on YouTube.  Of course, you have to find one where the person doing it doesn't annoy you.  Some of the people doing these things have annoying voices or sound like they are talking to a kindergarten class.  LoL  Anyway, I like to put a sheet mask on my face and listen to an Australian man with a soothing voice tell me that everything is alright.  It sounds silly, but it does help me relax and forget about my worries for a little while.

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