The Basics: Orthostatic Intolerance (OI) 

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I'm so sorry, Kat. I'm only at 7 years with ME, 3 bedbound. Can't imagine 25 years of this. Maybe someday we'll have a chance at living again. Hugs from Seattle 😴

@@mischa7601 I hear you , know i feel for you , sending much love and understanding ..😣

I've found they are super helpful as well! These guys are doing awesome with their content!

Have you tried to walk for 1 min 2-3 times a week for at least a month?

Some people with orthostatic intolerance find that they can tolerate supine or seated exercise better than walking.

Not sure if I have this I just have long covid, but I find the more I exert, the worse my symptoms get - Symptoms - Increased, sometimes rapid, heart rate. If I walk long enough, around 45-60 mins, I feel unbalanced, which also happens sometimes with mental exertion Tight feelings around my body which can lead to GI/IBS like symptoms if they have been exacerbated enough. Tinnitus Sometiems I'll get a slight difficult swallowing or visual changes, although not too often. The more I exert, the worse it gets, The symptoms started rapidly in august 2023 while out on a hiking holiday. I don't lack fitness, my body simply hates exertion now. If I exert long enough, I'll get adrenaline rushes/panic attacks that happen a few hours or a day after. But If I keep my exercise down to no more than 1 hr walking a day, then that doesn't tend to happen.

@@BeastLordofMetal seeing that you can not walk for 45-60 min without over exertion. I would suggest to try to walk 20-30 min as often as you are able without feeling any worse for at least a month and see what happens. If you are able to do that increase the level slightly say 5 min or so for a month to see if you are able and so on. You do not want to overexert yourself to often as that may cause a worsening of symptoms.

@@anna-marieeasmus7529 I have only been walking 25-35 minutes for the majority of the last 4-5 months. The symptoms are the same. I even have a day off per week where I remain sedentary besides chores. Gradually increasing it doesn't help and 25-30 mins brings up the symptoms enough for me to want to avoid doing more.

Postural Orthostatic Tachycardia Syndrome (POTS) is a type of orthostatic intolerance OI, in fact the most common form. Other forms include Orthostatic Hypotension OH in which heart rate typically doesn't change but blood pressure drops, and several other subtypes, e.g. hypertensive POTS, or hPOTS. I personally have OI, yet don't meet the criteria for either POTS or OH, which is another possibility. According to my autonomic neurologist, the underlying pathology among all is "presumed to be similar." POTS is generally defined as a rapid increase in heart rate upon standing of more than 30 beats per minute, or a heart rate that exceeds 120 bpm within 10 minutes upon standing. All of these major subtypes of OI involve an insufficient upwards blood flow response by the autonomic nervous system when we change our position from lying or sitting to standing, causing some or often many of the symptoms described in the video. It can be very disabling, and frequently is. Many of those with OI, but not everyone, are able to lessen their symptoms and improve their OI through some combination of different approaches, including medications in certain cases. Some may actually recover, or go into remission. Some, though, do not for reasons not yet known and continue to struggle for many years.

⁠@@mardelseain OH the heart rate can also change, but as per the diagnostic guidelines for POTS, they normally won't diagnose you with POTS if you have OH.

@@elizameimusic Yes. Good point. I edited to my comment to say "typically". I actually know of cases, where the person was dx'd with both, in that their increae in HR clearly exceeded the standard, and BP also drops. I suspect most drs won't give both dxs. Either way, the compensation is still abnormal. Unfortunately, many pts are dismissed when they don't meet consensus.

@@mardelsea I now have both OH and POTS diagnoses from separate doctors hahahaha

@@mardelsea Do you have OCHOS? I’m about to get transcranial Doppler testing.

Dr Peter Novak has tested this in patients with POTS to see whether it could be used in an acute setting to reduce tachycardia. pubmed.ncbi.nlm.nih.gov/37919442/ But I don’t think anyone has tested it in ME/CFS patients yet. Lying with your head down (Trendelenburg position) might put a strain on the body so it’s probably best not to try it until there is further research.

what meds help?! thx🌺

@@EC-yd9yv It depends on the subtype, and whether there are other medical conditions which preclude taking the meds. For POTS (which I briefly describe above) beta blockers are quite common, as they typically lower heart rate. Not everyone can take them, however. Consulting with one's dr is essential.

They have a few videos on that already. They're for providers, but the information is there. These videos are supposed to be quick and simple informative videos to get people going down the path for understanding. They can't have everything in every video as it would be hours and hours long.

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-UjDMfwtEFa4.html

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-2KkYcA5zbNQ.html