Dysautonomia (Autonomic Dysfunction) Community
can it be?... :-/
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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can it be?... :-/

Hi at all,

my name ist Andrea,  Im 37 years old and I have a little sweet son. I live in Germany and I hope you can understand me, because my english isnt so good. But I hope you can work with... ;-)

In august I had the last piece of my chemotherapie, that I had get since march this year. I had Breast Cancer. But the therapy makes him go away.

My new trouble started in July this year.
One day on another I felt lightheaded and dizzy. And these things going on and on and on... than I felt out of condotion. My Heartrate starts to run when Im upright. So I had read it with my blood pressure monitor. The heartrate was 140bpm when Im upright and 70bpm when Im laying down.

As I saw my feet, legs and my arms and my hands was I very anxious!!! Every time, when Im upright, they turnd red and they are very cold. When I walk a while, it begins to tingle. And I feel that my arms going very waek and also cold and my finger starts to tingle and I cant feel right in my fingertips. When I stop to standing and laying down, my legs and my arms become a  normal colour.

Even when I talk with someone I feel a tightly belt around my chest, my arms going weak, my hands and my feet going colder and colder, also my hands. I have pain in my left shoulder, feel very tired. The same procedere when I walk.

The lightheaded and dizzyness gets better at this time, I can walk for one our, can pik up the rooms in ouer appartement. Bring my son to school, so thats it. But Im very tired and waek when I had to do that all.

The last Doctor they had seen my circulatory disorders, mean it can be a microangiopathy. A disorder in the little blood vessels. Thats not good... is it all over my body??? Is this a desease, thats making me feeling so bad?
I feel always nausea. I have a red dry tongue.

In a standing test, in german it is the “Schellong-Test“, you woud say “the poor man's tilt table test“, I had these BP's and pulses:

In the afternoon:
After 10 minutes lying down
103/70 pulse 76

After 2 minutes standing
100/72 pulse 106

After 5 minutes standing
99/76 pulse 116

After 10 minutes standing
91/76 pulse 132

After 15 minutes standing
90/70 pulse 132

In the evening
After 10 minutes lying down
100/74 pulse 76

After 2 minutes standing
96/85 pulse 96

After 5 minutes standing
98/78 pulse 101

After 10 minutes standing
97/83 pulse 98

After 15 minutes standing
98/79 pulse 98

much better pulse!!!

They think it can be Pots.

But the other Tests are negativ of Pots, the test of sweating is ok, I have no polyneuropathy or something, the test of  catecholamines is ok.

I had read about it in another forum. There was another man, he had the same symptoms like people with Pots have, but later his doctors find out, that he had and have a micro-vascular heartdesease and it wasnt Pots. He was misdiagnoses with Pots.
How can I be sure it is really Pots, with all these mystery things?

I think, I do not have the right Potssymptoms. For example I can walk 1 hour and have just a little dizziness. The next, I love it warm, I need it verry warm, because my cold feet and hands. I can take a hot shower for a long time and its feeling good to me. Yes, I feel better, when I can stand under the warm water. I think it expands the blood vessels. I dont sweat more or at night. The only thing I have is the fast heartrate, when Im upright. Thats all I have with you in common. And this can be also a symptom by another desease.

I have one more question.
When I eat something, I start to freeze!!! My hands and my feet are verry cold, but much colder, when I had eat something. And in the evening, when I lay in my bed, I have still cold feet and hands, but also my nose is so cold, it hurts me when I breathe.

I cant understand it, what can it be???
Post? I dont think so...

May you can help me?

With warm regards,
Andrea.
2 Comments Post a Comment
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612876_tn?1355518095
I think one thing you need to investigate is POTS with Raynaud's. It could also be POTS secondary to Raynaud's, I believe. At any rate, your symptoms are very similar to a few of my close friends who are diagnosed with POTS. The thing with POTS is that you have to understand it is not a disease, it is a *syndrome*. A syndrome is just a group of medical findings that tend to go together. Diagnosing a syndrome doesn't tell you about the underlying cause. So, yes, by definition you do have POTS. That is established clearly by your tilt test. What you need to ask your doctors to investigate now is what is the underlying cause for your POTS? Is it post-viral, autoimmune, or any number of other causes?

Because of your cold intolerance, I would investigate Raynaud's first and go from there.
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11357363_tn?1417515642
Hi Hieferly,

thanks for your reply!

I havent Raynaud Syndrom (syndrome). Because my arms and legs just turnd blue, if Im standing. There is no connection to warm or cold!  The doctor who examined me yesterday, has seen, that my capillary are to tight. :'-( And thats the reason, why my arms, hands, legs and feet turnd blue, when Im standing.

Now Im scared, its also in my heart... because I think tahts the reason, why my heart is so fast, because it hase to work more and more, when my kapillary are to tight for the right circulatory.

And it is not POTS.

Or they are more people outside they have the same problem?

With warm regards,
Andrea
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Heiferly
Columbus, OH