UK: has anyone had a blood volume test? Which one?
Wondering whether to do this (because I have OI and so many PWME have low blood volume and I want to know exactly what issue(s) I've got rather than just keep trying drugs at random). If so, I'm not...
View ArticleMore proof POTS is an autoimmune disorder?
Dr Grubb, who has been treating POTS patients and studying the condition for more than three decades, now believes he and his collaborators are increasingly close to proving a long-held theory that...
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‘Jeopardy!’ viewers upset over inaccurate and offensive medical answer [POTS]
I'm happy to see Jeopardy getting some (pretty serious) flack over their debacle on the way they portrayed POTS. ‘Jeopardy!’ viewers upset over inaccurate and offensive medical answer
View ArticlePOTS, antibodies and immunosuppressant drugs.
I fell ill in March 2020 with what seemed to be a virus and I have still not recovered. My symptoms include an unrelenting profound malaise 24/7 every single day during the last 18 months, a feeling of...
View ArticlePoll: Has raising the head of your bed helped your OI/POTS/NHM?
The lifestyle advice for orthostatic intolerance includes raising the head of your bed so that the whole bed is on a tilt. The idea is to both recondition your body and keep fluid in your blood rather...
View ArticlePOTS HPA Stuff
So, I have been dealing with a bad case of POTS for a few years now. Have tried many things. Drs are unwilling to help in most ways despite seeing some of the best cardiologists in my area. My hormones...
View ArticleDriscoll Theory Approach
Has anyone used the Driscoll Theory approach or taken Parasym Plus to treat POTS/ fatigue? I'm reading her book and she describes me to a T but am having trouble finding many reviews of her supplements...
View ArticleInfusion time for IV saline- does anyone know what the typical infusion time...
I will be trying this today and am wondering if flow rate can impact how well it works since I am gathering that some of the benefit may be from baroreceptors in the blood vessels detecting extra...
View ArticleClinical benefit of midodrine hydrochloride in symptomatic orthostatic...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4951503/ (open access) Clinical benefit of midodrine hydrochloride in symptomatic orthostatic hypotension: a phase 4, double-blind, placebo-controlled,...
View ArticleBlood volume
Is there any confirmation that low blood volume is the cause of POTS? Or could it be that there is another explanation like endothelial inflammation?
View ArticleHow do you know?
How do you know? When you are diagnosed wit POTS and MECFS, because you have the following symptoms Fatique Palpitations Nausia Bloating Poor sleep exercise intolerance Headaches and so on Heartrate...
View Articlefor those who got worse with mestinon
Dr.Systrom seems to have quite a success with Mestinon on his patients. I'd be interested to hear what others WHO GOT WORSE on Mestinon found to be helpful. Im also wondering if you are mild/moderate...
View ArticleCompression Stockings for Low Blood Pressure
Two years ago I had a months-long problem w/ swelling in lower legs and feet. Fortunately, my heart was deemed healthy. The swelling eventually decreased, but there was still a slight amount. I'd also...
View ArticleCompression Stockings Improve Cardiac Output and Cerebral Blood Flow during...
Another study from van Campen, Rowe, and Visser! Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in ME/CFS (van Campen et al., 2021)...
View ArticleAny Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety...
Hello, So I got a prescription for Mestinon from my doctor to see if it helps with exertional intolerance (most notably pain/discomfort after exercise). I am freaking out about it though. For those...
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Poll: Mestinon Trial of 1
A bit late, but I promised to report about Mestinon Trial (@echobravo) My new GP takes M.E. seriously. Not only that, he allows me to trial Mestinon without going through a specialist which would be...
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Strattera (atomoxetine)
I've started taking Strattera today, for OI problems. It's supposed to take 4+ days to start feeling effects, but I've already got a nice buzz going, and I'm feeling very alert, but in a pleasant way....
View ArticlePOTS Treatment / Salt Tabs & Electrolyte Powder
Hey PR - I just had a quick question. My CFS/ME Specialist advised me to take Metoprolol for POTS and also suggested to increase my salt intake to 2-4 grams a day with increased fluids. Specifically...
View ArticleWhy Does Drinking Electrolyte Water Help POTS?
Shouldn't we all have fairly normal electrolyte and hydration levels?
View ArticlePoll on the effects of IV saline on ME/CFS symptoms
This is the first poll I have ever created (and I am technically challenged with these types of things) so am hoping that it worked! I have been posting a lot about IV saline in @jeff_w thread but...
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