Dysautonomia (Autonomic Dysfunction) Community
Pots or something else?
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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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Pots or something else?

Hello,

I'm a 45y old man, living in the Netherlands. I have serious fatigue problems for more than 10 years. Since 3 months it has been worsened. In the hospital they can't find a cause. I discovered that my heart rate rises from 70 to more than 100 when lie down and stand up. It does not decrease, also not after 10 minutes. The BP is not changing much.

I'm also a little dizzy but not that much that I will faint, and not only when I stand up. The doctors don't know POTS. I informed them but they think it isn't POTS. But they can't explain why my hr is rising that much when I stand up. So I was wondering if there ate other explanations.

Regards,

Martin
3 Comments Post a Comment
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612876_tn?1355518095
I'm quite sorry because I don't know the names of any autonomic experts in the Netherlands. I am going to do some research this week and get back to you. I hope to locate a doctor in your region that has more expertise in this field.

In the meantime, if you have a blood pressure cuff at home or can buy one at the pharmacy/chemist's, it would be very helpful for you to keep track of your blood pressure and heart rate both lying down and standing up at various times of day (as well as before, during, and after any exercise such as climbing stairs).

I also have a document that compiles the leading expert opinions on diagnosis of POTS and lists references for further reading if you would like me to pass that along to you so you can give it to your current physician.

I will do my best to get back to you within a week. I'm sorry to hear you are suffering these symptoms; I know firsthand how troubling this can be.

Cheers, H.
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Avatar_f_tn
Thank you for your reply. I have already measured my bp and hr as you suggested. In all cases the hr is about 30 bpm higher when I stand up compared to lying down.

I did not work for the last two month because of fatigue problems. I was sent to the university hospital to find out what is wrong. I will have more test especially on heart problems. I hope to know more about that in a few weeks. I also suggested POTS. The doctors are not taking that seriously. But if the tests on my heart condition are o.k. I want to go to another hospital where a doctor is specialized in POTS. I already know where I could go.

For now I have only one question: Are there other things besides POTS that can cause the sustainable increase of the HR when I stand up?
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Avatar_m_tn
Hello,  have you looked into Dr. Kenny Demeilier in Belgium?   I believe he is an immunologist by training.  I confess all I know of him is through what I have read online via the Chronic Fatigue queries and in discussions with others suffering Chronic Fatigue Syndrome, so I cannot speak from any personal experience with him.  Our son has dysautonomia which is a condition that may be found in different diseases, including Chronic Fatigue Syndrome.  Fatigue is such a frustrating symptom, I think both for the sufferer as well as the medical doctor.  So many things can cause it.  Our experience here in the US has been that most of the doctors we have seen are not familiar with dysautonomia.  Moreover, the doctors that advertise as "autonomic specialists"  disagree with one another on what is the best course of action.  I do think there is consensus, however, in that a thorough heart evaluation is in order as those may be the most serious in the short term.  And if those tests should show your heart is functioning normally, then that is wonderful news on one hand but that means the search is not yet over.  This can be bittersweet for someone with fatigue because even those of us who do not have debilitating fatigue become quite worn from all the doctor visits and lack of answers.  I will close with a link to a website related to Chronic Fatigue that mentions Dr. de Meirlier.  I don't know how feasible it would be for you to visit with him in Belgium, but perhaps a call to his office may offer recommendations on others that may be closer to you who might be of assistance.  Thoughts and prayers to all who walk this journey.

http://phoenixrising.me/archives/15366
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