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

Posted by jackiepon @jackiepon, Aug 12, 2020

I have been thoroughly tested at the Cleveland Clinic. I have been diagnosed with Orthostatic hypotension. I feel frustrated because it does not seem definitive and my fatigue episodes continue.

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hunby2blas | @hunby2blas | Jan 31, 2023

In reply to @roma01 "Hi I’m having very similar episodes and have been for a few years. It took me..." + (show)

@roma01

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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have you ben tested for allergies , some strange things happen with allergies, if not an allergest , maybe an understanding naturalpathy doctor , someone patient that can give you allergy tests

kmy01 | @kmy01 | 1 hour ago

In reply to @roma01 "Hi I’m having very similar episodes and have been for a few years. It took me..." + (show)

@roma01

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,

Jump to this post

Hi! Was scrolling through this thread trying to find answers for myself and I saw your comment! Have you looked into episodic ataxia !? It’s a genetic disorder and can run in families or start fresh with someone at any time. A lot of people get misdiagnosed with POTS when it’s in fact this. It would account for your slurred speech and how laying down helps!