Monday, October 25, 2010

I have a confirmed diagnosis!!!!!!!!!!!!!

That's right people, it took me 2 years but they/I have finally figured out whats wrong with me. I say I because it was I who took the idea of this diagnosis to my doctor.

I have POTS. Postural Orthostatic Tachycardia syndrome. It is also known as Cronic Orthostatic Intolerance, Orthostatic tachycardia, Sympathotonic Orthostatic hypotension, Hyperdynamic beta adrenergic state, Idiopathic hypovolemia, Mitral valve prolapse syndrome, neurocirculatory asthenia, Irritable heart, soldiers heart and effort syndrome.

Symptoms are usually due to cerebral hypoperfusion. It is an autonomic nervous system disorder. The disorder is really complicated to explain because it affects so much and does so much and has such a short name. Your autonomic nerve system conrols blood and the parts of your body that control your blood. Likek blood vessels and such.

Venous function is not good. When I stand istead of my blood going where it needs to go just pools in certain parts of my body. This causes my heart rate to increase severely and also means all parts of my body do not generally get the blood supply they need. I use 3 times the energy to do anything then any healthy person. Standing to a healthy person is like jogging to a POTS patient.

Interventions that sucessfully attenuate the tachycardia do not usually bring symptomatic relief. So they can some what control this disorder but generally only the disorder and not it's symptoms.

To test for this disorder diffinitively they have to do a tilt table test. I had mine this morning, They put you on an automatic table that goes from the laying position to the standing position. They strap you in just in case you faint. If you have pots then when they put you upright your heart rate will increase by 30 beats per minute or over 120 beats per minute. They monitor you the whole time. The test is supposed to be 30 minutes because for some people it doesn't rise for about 20 minutes. In my test my heart rate went from 83 to 132 almost immediately. And they didn't even put me at the full 90 degrees, only to 70 degrees. My heart rate then went on to get as high as 186 beats per minute. If you know nothing about heart rate most people's exercise heart reate gets to about 120 and when yours reaches the 180's they generally like you to go to the  ER. My get that high from just the simple act of standing up.  They stopped my test after about 15 minutes because they didn't think my body or my heart could  handle the whole 30. It was a nightmare. I mean I knew it would be bad but it was a nightmare. I cried like a baby. Afterward the nurse said if her heart rate and body did what mine did, she'd have cried too. That made me feel a little better. The doctor prescribed a beta blocker right there on the spot which will help make sure my heart doesn't go that fast and work so hard and hopefully regulate my autonomic nervous system better. As for the symptoms there is not much to do. I am to avoid triggers and change a few habits. Unfortunately the 2 biggest triggers are heat and stand for long periods of time and unfortunately I live in Arizona and I stand all day doing hair for work.

So, my test was horrible and the last 2 years was horrible and I always felt crazy cause no one could tell me what was wrong with me. But now I have a diagnosis and I am not crazy and there is definately something very wrong with my body. Most POTS patients take 5 years to get a diagnosis and I am happy that I only took 2 and a half years. 

So I am not lazy, my body just uses 3 times the energy and that makes me tired. Any position other then sitting or laying down is difficult on my body. So there, stupid doctors and ignorant people who thought I was faking to get out of stuff or just lazy. I have POTS and it's a serious disorder. I'm thrilled. It's sad but very comforting.

6 comments:

Dave and Rachel said...

this is awesome news. Im happy that ur happy:)

sherry said...

That's great Callie! Well, it's not really great but it is great that you know what is making you so sick. You knew what I meant;) At least there are some meds that may help and some treatments that may work. Congrats!(There's got to be some way to do hair sitting down....)

Jayme said...

I am glad that they FINALLY figured it out! I hope the meds help you out.

Tiffany Lloyd said...

So happy for you friend! I started reading about it as soon as I read your blog and hopefully you'll be one of the many that see full recovery with treatment! this is a happy day. good luck with all of it dearest!
Tiffany

Spence said...

Congrats, Callie. Must be nice to finally know!

Katie and Greg said...

I'm so happy that you finally know! It's sometimes better to know then to not know.
Now on to the next step.... treatment! Any luck there?