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I have symptoms similar to POTS but was told it isn’t POTS

Heart Rhythm Conditions | Last Active: Nov 21 8:48am | Replies (13)
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@jackiepon

Thank you so much for your replies. I forgot that my blood pressure was very low and they put me on mitodrine but then went too high. When i have an episode my bp doesn’t change. There seems to be no relationship between bp and episodes. It was wonderful hearing from someone with similar issues. I’m having an episode now. I will lie down for a bit, it will pass, and then i will go on with my day. So frustrating. Thank you again.

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Replies to "Thank you so much for your replies. I forgot that my blood pressure was very low..."
roma01 | @roma01 | Jan 31, 2023

Hi
I’m having very similar episodes and have been for a few years. It took me a while to realise lying down resets me somewhat but I’m left fatigued. I feel my episodes are linked to my Automatic Nervous System somehow. In addition to most of the symptoms described, I have recently experienced slurred speech and difficulty formulating sentences during an episode.
I attended ER during an episode in November, and it has been treated as a suspected TIA. I was put on statins and thinners immediately. My cholesterol was 6.9. I had a CT scan. The CT scan was inconclusive and provided no answer as to what was going on. After almost a month on medication I had another episode which included slurred speech, and again I presented at ER. I was given an MRI 10 days after the episode which was clear..
I have had at least three more episodes including slurred speech since December and occasionally the fatigue that follows an episode is so extreme I struggle to complete daily activities.

My Slade speech does not appear noticeable to other people, including physically know me well.

I have had a seven day ECG and worn a 24-hour pressure monitor during this period and I am awaiting some more detailed feedback about the results which indicated two instances of tachycardia,

My father used to report similar symptoms and I am sorry to say, as a family we got frustrated because he couldn’t be specific in describing what was going on. I am sorry to say that my dad had two heart attacks. 10 years apart. His second heart-attack was fatal.

Today I am returning to work. I am taking medication that I am not sure I need to be taking and whilst my employer has been very sympathetic and arranged a phased return to normal duties, I feel far from fit to face a working day. I am lucky that I work from home and travel is not necessary and it is possible for me to lie down during the day in between appointments. Whilst the situation could be so much worse, it is very difficult to complete my day-to-day tasks whilst managing these episodes and subsequent fatigue . (Neglected to mention that I did get in diagnosis of ME approximately 4 years ago.
This has been a worrying time and, in addition to everything detailed above, I am starting to feel, depressed.

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