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

Hi @jackiepon, I wanted to welcome you to Mayo Clinic Connect. I am sorry that you are feeling frustrated with your diagnosis. I am tagging @julianned, @jal333, @lpate, and @fiesty76 who have all either had experience with POTS or Orthostatic Hypotension. I would like to help guide you to a group of members that you can speak with about this, but need just a little more information.

Can you tell me, other than fatigue, what other symptoms are you experiencing that lead you to believe you may have POTS?

They said I don’t have POTS. I get an episode of fatigue where i feel it in my heart and sort of dizziness and cannot come up with words to better describe the feeling. That is frustrating because that doesn’t explain much. I lay flat, cover my eyes because i seem to be sensitive to brightness and in about 15 minutes I feel normal.

@jackiepon What did the doctor recommend for treatment?

A few suggestions but nothing has made a difference. Compression socks, hydration. At this time, nothing.

Hi, @jackiepon, I wasn't familiar with POTS and doing a quick search found this site: https://www.webmd.com/heart-disease/atrial-fibrillation/postural-orthostatic-tachycardia. My symptoms don't fit this but my cardiologist diagnosed my Orthostatic Hypotension by first taking my bp in both arms and in each of the lying down, sitting and standing positions. My OH occurs infrequently and when standing, usually for some time. I immediately know to sit down because of the sudden light headedness. Until I can sit, clenching my fists tightly at my side and even crossing my legs like scissors while standing can help bring the pressure up a bit. I also take a low dose of 5 mg of prescribed Amlodipine Besylate 1/day for high b.p. Cardio told me to stop the med until my bp comes back up to 130 and that usually happens within a day or two of stopping the med. Fortunately for me, and perhaps for you, everyone is different, my sudden dizziness subsides rather soon after sitting or lying down; however, the episodes do bring on extreme fatigue but that improves as my systolic b.p. climbs back up. I know that dehydration can bring on an OH episode but I don't think that is the cause for me. I have dry mouth and kidney problems which have me drinking a great deal of water each day. Now that the condition has a name and I know what to do, I check out places for "chairs" when in stores or offices. Until getting to the cardio, those initial drops were scary!

@jackiepon, Just remembered that the cardio also suggested I eat something salty (which is opposite for h b.p. and kidney patients)and to drink more water even if I feel well hydrated..something about making the vessels tighter and causing the heart to pump better...another thing he mentioned was that if my systolic dropped below 90, I was having an episode. Of course, when it happens, we don't need a b.p. cuff to realize what is happening but it can confirm the OH so I take mine as soon as possible afterwards.

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.

@jackiepon How are you feeling today? Have you considered seeking a second opinion?

Actually, last week i had a virtual appt with a cardiologist at the Brigham. He gave us a suggestion of something else to try so we plan to share the idea with my doctor. Thank you for asking.

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.