PoTS – getting diagnosed (it’s a bit long, this one)

Hello you!

All right. PoTS – Postural Ortostatic Tachycardia Syndrome. Ever heard of it before? If you have, you’re one of very few.
The short explanation is that your heartrate will go up (my highest recorded is 243bpm) and your bloodpressure will drop.
I’ve never met anyone with PoTS, only talked with a few people over Facebook.

Now, PoTS is a syndrome, very important. Not everyone is affected the same way. Some are just a tiny bit affected and some are stuck in bed for longer periods of time. This also mean some can continue with a normal life and others can’t. I’m one of the people that can’t.

There are so many different symptoms you can have with PoTS that it’s sometimes impossible to know exactly what’s going on.
My cardiologist has said the following:
50% of those who have it will get better within 5 years. 25% will stay the same. 25% will get worse. I’m part of the last 25%. Crap.. 🙂 I’ve had it since I was little.

As a pree teen I was tall and thin, meaning that is what the doctors blamed for me not eig well. I wasn’t very ill at this point. I kept falling back down when standing up, I couldn’t take the summerheat etc. It wasn’t good, but it wasn’t too bad either. During my teens it got worse and as an adult it was even worse.
My mother kept taking me to the doctor but they only said “she’s tall and thin, she’ll grow out of it”. When my mother couldn’t take me anymore, due to workhours, my (maternal) grandmother continued. But it was always the same – tall and thin. It got harder ad harder to go o school, but I managed to do it. University was out of the question 😦 My body couldn’t take it… I LOVE to study, I wanted, and still want, to study microbiology. You know, DNA and stuff 😛

I was born november -82 (16th to be exact, wee!) and it wasn’t until december 2011 a nurse started to ask question about my bloodpressure.
I was in the hospital after passing out at the store. My pulse had reached 192bpm and my bloodpressure dropped. The cashier called an ambulance.
First I was diagnosed with sinustachycardia. The day before I got to go hom, one of the nurses reacted to my bloodpressure. How I seemed to get worse when I stood up. She did  an ortostatic bloodpressure, meaning taking ma bloodpressure while on the bed, then sitting, then twice while standing.
She then told the doctor I needed to do a Tilt table test. Guess what, the doctor didn’t care!! I am not joking, she had to force him to do the paperwork for it!!
After that, he prescribed betblockers to me.
Betablockers is EXTREMELY BAD when you have low bloodpressure AND PoTS!! But since he didn’t believe the nurse he gave them to me anyway. About  minutes after the first pill, my bloodpressure dropped. They had to put me in a wheelchair to get me back to my room. The doctor still didn’t care!! He said it had nothing todo with the medication. The nurses just looked at him, like they couldn’t elieve him.

I was on this medication for 3 months and nothing worked. It was pure hell. My normal bloodpressure when sitting up goes between 100/60 – 105/65. If stressed, it’s 100/70. Now ad PoTS to that and it’s bad.

Finally, I got to do the Tilt table test.

20161105-tilt-table-test

(I found this picture on myheart.net while googeling “tilt table test”)

I got hooked up to a machine that recorded both pulse and bloodpressure. Now, I passed out so my memory is a bit fuzzy 🙂 The most I can say is that it’s NOT a fun test to do when you actually have PoTS 🙂 I even got a dose of Nitroglycerin spray and… no… just… no…

This is when I found out that my betablockers were actually dangerous to me and that the first doctor should never have prescribed them to me.

I got new medication for my pulse, Procoralan. This one doesn’t make me go “weeee, POFF” 30 minutes after taking it 🙂 (I’m still on it.)

Since I, finally, got a diagnosis I’ve been able to do a lot of changes for the better in my life.
Now, it didn’t stop here. I got to learn a few things.

I’ve Always wondered why everyone can just stand in line to buy something, or just stand. Just stand, on the spot, ot moving, for a really long time. When I try it, my bloodpressure drops and if I don’t move I’ll pass out within 2-3 minutes. I can’t do it.
Oh, PoTS? This isn’t something we all live with? Who knew…
Other things I thought were normal for us all:
– That we all get really dizzy during summer and warm weather.
– Overheating.
– No vision (when bloodpressure drops).
– No hearing (when bloodpressure drops).
– Passing out after a shower. I have 2 bottles of water with me and need to get on the floor with my legs up after getting out. Sweating and shaking like I’ve run 10K.
– Probems eating.
– Headaches.
– Getting exhausted easily.
– Standing up = falling down.
– Chestpains.
– Being out of breath.
– Falling asleep after meals.
– Impossible to eat breakfast.

Those are only a very few things we all suffered from.

If you’re curious and want to know more or don’t understnd something (in all fairness, I’m very tired so I might have written a bit incoherent somewhere) just ask, I don’t mind 🙂

Oh, I almost forgot.
There is medication you can try, that raises your bloodpressure. Ive tried a few different but it didn’t end too well. I’m very sensitive to medications.
The only thing I can actually take is my nitroglycerin spray for the chestpains. I’ve been t the emergency room twice because they thought I’d had a heartattck. Pain spreding down my left arm and up to my jaw. Out of breath, couldn’t talk… But there are no hearattacks, only PoTS.

Gotta love it…

 

 

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