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Newly Diagnosed and Scared

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My name is Cait and I am a 29 year old female. I am married with a 2.5 year old daughter and have recently been diagnosed with Dysautonomia. I am very scared as I experience many symptoms that keep me from functioning almost daily, I also suffer from GAD, Panic Disorder, and Health Anxiety.

For months I have been dealing with unexplained dizziness, palpitations, high heart rates, excessive urination, headaches, nausea, night sweats, etc. I don't even know where to start to be honest. I have had every test done known to mankind and almost all have come back normal with the exception of a low Magnesium level once that has since been corrected.

My Cardiologist and PCP both seem to think that I have a type of Autonomic dysfunction but since they have very little knowledge on the subject they are unable to tell me what kind. I live in NJ and am extremely scared especially with having such a young child without any real answers. I don't know when to go to the ER or how to discern my symptoms from emergent to non emergent. I feel very lost. I was able to find an EP that specializes in Dysautonomia but the earliest available appointment is not for almost 2 months. I don't know how to deal at the moment. Please if anyone can help or provide any information or advice I would greatly appreciate it. I sit here so often wondering if the doctors are missing something.

Thank you

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In the begining of my POTS I went to the ER a few times sure I was having a heart attack. The 1st and 3rd time they gave me a small script for xanax. It helped my panic at the unkown I was having when my body was reacting oddly. It didn't help my main symptoms but if I was having a day I thought I may end up at the ER I could take 1 and not end up there. It was like the stress of not going on was making things worse. The scripts only had 8 xanax which isn't much but it helped for the year and a half before I got my POTS diagnosis. Knowing what is going on helps tremendously and it has been about 9 months since I had to go to the ER. Personally,  information was the key for me. Now it is slowly trying to find an underlying cause and medications to help me get my life back.

I think the best thing to do while you wait is increase your water, it never hurts, and document your symptoms and see if you can find triggers and avoid them. It takes a while but you can do it. Don't worry about things you can't change, only what you can change and arm yourself with knowledge. I am sure the doctors will find the answer it just may take a while. Have faith that you can do it. Actually there is a wonderful post on here from a week or so ago called "Victory!" When I read that it gave me such hope for the future.

Good luck, and keep your chin up.

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Hi Cait!  I'm sorry you're feeling afraid and unwell!  There's something beautiful about how accepting and funny toddlers are!  My youngest is just over 2.  I've fallen down or collapsed and he climbs on my back yelling "Ride!  Ride!" because he wants me to crawl around.  He helps me see the humor in the situations that would otherwise be very un-funny.

Do you have any idea which dysautonomia condition you have?  I have POTS so I have tachycardia and dizziness with standing, heat and cold intolerance, exercise intolerance, fatigue, nausea and constipation.  I'm thankful to have escaped the headaches which many other suffer from.

Does your heart rate come down when you lie down?  Lie down with feet elevated?  Put ice on your face?  Drink a lot of water?  Drink a lot of electrolyte solution or take salt tablets? As you start to explore what modifies your symptoms, you'll learn how to take care of yourself.  Every dysautonomia patient is different, so don't be shy about taking control of your medical and self-care.

Many hugs to you ((((hug)))))

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I agree with @StayAtHomeMom that knowledge is power!  I'm learning to be more functional by noticing patterns of symptoms and working around them.  My worst orthostatic symptoms start after 5 minutes upright - but I can do housework for 5 minutes and then lie down until my heart rate recovers and repeat until my chores are done.  

I've learned that sleep is way more important than I ever expected.  I can reduce symptoms by sleeping more.  And, I've learned to wait to start my day until I've gotten enough sleep.  I changed my kids' schedule to accomodate more sleep for me and keep a stash of DVDs on hand from the library to keep my toddler entertained if he wakes early.

Many little changes make a huge improvement in daily functioning.  You'll find what works for you as you get a better idea of what your symptoms are and what makes them better/worse.

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