[Heather1603]

Thank you for reply Amina… its concerning so many people are being undiagnosed or misdiagnosed….

I have just had the report back from the tilt table test I had done on 8th November! It states absolutely nothing about the extreme tachycardia during the test, it only states that I had a drop in blood pressure whilst having symptoms and no drop in heart rate, that syncope is the possible cause of blackouts (I don’t have them) and so he wants to treat me with midodrine.

talk about listening skills! or reporting on test skills, this is absolutely outrageous…

Heather UK

[Heather1603]

sorry the frontal and maxillary sinuses.

I am not very good with my anatomy and physiology now.

Kind regards

Heather Uk

[Heather1603]

Thank you and that is what I thought, how can you treat something without knowing the cause! I had a ct scan of the head and the only sinuses that my own gp not my cardiologist said were showing some sort of abnormality was both sinus areas above the eyebrow, I think if there was a problem like you had the great sense and experience to think of it would not be in both the same in that area?

I think I need a definitely second opinion as I have had the signs and symptoms of PoTS for years.

Let’s hope a new day brings new hope…

Kind regards

Heather UK

[Heather1603]

Hello again

I thought I would update you with whats happening here in the good old uk lol

The consultant cardiologist telephoned me this evening (something I was told they never do) by one of the good old British Rottweiler secretaries…… he told me I had vasovagal syncope and would fit me with an implantable loop recorder, would see me sooner than my planned appointment in December for treatment (don’t know how without knowing what is causing it), and didn’t even mention PoTS! Does this sound pretty standard?

thank you for your hugs… really need them, just had a really funny turn, felt hot, sick and shook uncontrollably, my alivecor ecg monitor was all over the place….. had a terrible pain in my left arm and the left side of my neck and left me with an awful taste in my mouth after it subsided… lasted over half an hour….

look forward to hearing from you and hope this message finds you well

kind regards

Heather UK

[Heather1603]

Thank you once again for your reply and I agree it is difficult to get to grips with understanding fully (lol as mud)…..

I can confirm that I had my TTT and it was dreadful, I would never have believed it could make you feel so ill or react so badly.

The length of time I should have been tilted to the 70 degree angle was 45 mins, I didn’t last much past ten minutes where I became very short of breath, sick and very hot, I felt that I would have passed out or even worse that my heart would stop, they confirmed that they had captured the event but did not say what the event was!

All I can confirm is that the lady monitoring the ECG was a senior echo cardiographer in the heart and lung centre, and she said that she expected me to pass out way before the time that I had begged to be lowered. Also she said that the cardiologist would be reviewing the results that same day or on Monday (today), and would contact me regarding the results, I informed her that I had an appointment in December with the cardiologist and wouldn’t I have to wait until then for the results, to which she said oh no…. he would look at the results and would be contacting me early this week…..

So I have to wait…..

Can I ask another very important question…. do people who have PoTS have abnormal events recorded on ECG’s during the TTT?

Kind regards

Heather UK

[Heather1603]

Thank you for your response. I have a tilt table test and a 72 hour holtor monitor booked for tomorrow morning at 9am. This is under a cardiologist but he is not a specialist in PoTS or autonomic dysfunctions so it will be just tests related to the heart.

I wonder if you could answer another query of mine please?
If someone has say…. Cold hands and feet, night sweats, heat intolerance, urgency in micturition, lack of co-ordination(clumsiness), etc of other symptoms, are these related just to pots or other autonomic dysfunctions?

Would very much appreciate your reply

Thank you

Heather UK

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