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Objective: To report a case series of patients with neuropathic POTS and cutaneous phosphorylated alpha-synuclein (P-SYN) deposition on skin biopsy and compare these to neuropathic POTS patients without P-SYN deposition. Methods: The medical history, physical examination findings, autonomic...

I was advised to start with 30mg TID with a gradual increase to 60mg TID. Experience has taught me to be extra cautious so started with 15mg once a day and very gradually increased to recommended dose over about 3-4 months, side effects were indeed dose dependent. I was prescribed 60mg pills but...

I'm really sorry to hear that @Perrier :( I found the side effects annoying but thankfully tolerable and eventually they wore off. I had to start with a very very small dose and titrate up over a period of weeks/months. Increased sweating, eyes and nose running, some stomach gripes. Then they'd...

Pyridostigmine has been a fantastic PEM-busting drug for me, huge improvements in both threshold to PEM and recovery time from PEM. I was only prescribed it once my autonomic dysfunction had deteriorated to become very clearly abnormal, with SFN suspected - 20 years on from initial ME/CFS...

Yes, there are randomised controlled trials showing the value of drugs like pyridostigmine & ivabradine in OI patients. From memory these trials have all had POTS cohorts and not ME/CFS, but there'll be a significant overlap and for many the difference in classification/diagnosis will just be...

Don't tell my GP, i've had Circadin prescribed by them for a few years after a sleep specialist neurologist recommended it (in my 30s) :whistle: I'm definitely more drowsy for approx. 8hrs after taking Circadin (2mg slow release) and that can help me stay asleep a bit easier. But any...

Do you have any contact with respiratory physio's attached to autonomic clinics? I wonder if their experience might be helpful. My cardiologist used to send POTS patients for full cardiorespiratory workup, issues with breathing pattern (especially on standing) were so regularly noted that now...

Excellent post @Peter Trewhitt. After a couple of decades of experience pacing, and in recent years a great deal more awareness, adaptation and medication for OI, it still surprised me how much lockdown boosted my cognitive energy & symptom stability. I thought I had OI figured out and that my...

100% agree with this and can very readily differentiate the same day onset of POTS OI related fatigue vs the delayed (next day) onset of PEM. At the risk of making uninformed assumptions about what's happening, the same day symptoms are like a crash after excessive adrenaline: exhausted...

I've had a Noblechairs Epic for the past 18M or so and it's been wonderful. It gets a LOT of use at my desk and still looks and feels great - a real step up from any sort of semi-ergonomic office chair I've had before. The one aspect of the Noblechair that I really like is the lockable seat...

Mast cell "issues" are often considered as overlapping in Dysautonomia/POTS clinics. There's a sensible reluctance to call it MCAS and read into it too much as proponents of that can do, but there's definitely an awareness there can be an impact on cardiovascular symptoms at least. In my...

I received the AZ/Oxford vaccine 2 weeks ago, I'm included in CEV group 4 due to taking immunosuppressants + cardiovascular comorbidity. I had the vaccine the day before my fortnightly Adalimumab injection was scheduled. I then delayed the Adalimumab dose by a few days on the advice of the...

Exercise is important in the context of cardiac deconditioning, so when managing POTS it can't be ignored. But with that said, exercise is also recognised by most in this field as a key trigger for worsening of symptoms & autonomic function. Its definitely not considered a harmless thing that...

I imagine that's related to this work: https://www.s4me.info/threads/inflammatory-biomarkers-in-pots-with-elevated-g-protein-coupled-receptor-autoantibodies-2021-gunning-grubb-et-al.19055/

POTS has been understood & described as the "final common pathway for a number of overlapping pathophysiologies". In the context of simple, isolated deconditioning as a cause of POTS its not unreasonable to assume exercise therapy will be effective. But this isn't the case for people like us...

Pleased to see some higher quality evidence for use of Ivabradine in POTS. Its been prescribed by the experts for years, I have been taking it since 2016 with good results. I'm glad to see some acknowledgment of it lowering NE levels too - something that is rarely mentioned in the literature...

Paywall, https://www.jacc.org/doi/full/10.1016/j.jacc.2020.12.029 Now free access (Oct 2025)

From the article:

Open access, https://www.mdpi.com/2077-0383/10/4/623/htm

Hi @Woolie, Officially its Adalimumab prescribed for clinical non-radiographic axial spondyloarthritis. Unofficially the Rheumatologist was convinced of some form of SpA but on the fence about specific type, with no definitive evidence (yet). I appear to have elements of axial, peripheral...