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I'd tend to agree - the only caution I'd make from my own experience is if there are snacks between meals the responses may overlap and confound, the rollercoaster I spoke of before. Fairly straight forward to rule out if following a stricter meal plan again though.

I had borderline low morning fasting blood glucose tests, but never caught an out of range (low or high) result during the day. The endo that I saw said usually the next step would be a glucose tolerance test with continuous insulin monitoring in hospital, he felt that would probably catch some...

The symptoms match reactive hypoglycemia or postprandial hypoglycemia but if you say that to most doctors the response will be dismissive. I had a GP tell me to "eat less cake" and another, less well informed endo tell me "you're just an outlier". In the absence of a better understood driver...

Should add that I was tested, multiple times, for diabetes & never showed any unusual fasting blood glucose results. The endo saw a lot of POTS/OI patients and recognised it well in that group. There were theories on it being motility related in some patients but it seems like there is a lot...

I've talked about my experiences with this sort of thing before. What started off as inappropriate hunger and tummy rumbles 1-2hrs after meals eventually became more obviously akin to postprandial hypoglycaemia. Heart palps, sweats, chills, weakness and significant fatigue/somnolence would hit...

I had a thigh muscle biopsy as part of a workup in an NHS myopathy clinic. It was a needle biopsy (looked more like a drinking straw to me!) so only needed a small incision. The second shot of local aesthetic really hit a nerve and I almost kicked the consultant in the face by accident, but...

I'm glad this distinction has been recognised - it certainly took larger, regular doses of Mestinon to improve my condition in a way I could readily observe. Curious to see what comes next. Is there funding/interest to build upon these results, remove that acute dose limitation, show the...

This is one to keep an eye on: https://clinicaltrials.gov/ct2/show/NCT03919773 :)

You're welcome. Muscle weakness/burning was rarely (maybe never?) a problem for about 15+ years after my CFS diagnosis. When I was mild I would do dumb things like lift weights with friends, keeping up with them, then unsurprisingly get "sick" (PEM) for a week after. It was only after a...

Hi, I take it every day. The protocol used in POTS is usually 3x 60mg per day, starting with 30mg once per day and titrating very slowly over weeks/months. I started at 15mg as I'm usually sensitive to meds. The side effects for me were temporary, returning with dose increases but then fading...

I've been looking forward to this study! Eager to see full text if anyone can access? Pyridostigmine has seen further limited trials over the years in the POTS/dysautonomia domains. It isn't a first line treatment and lacks the higher quality evidence we have for Ivabradine, for example, but is...

For what it's worth I had 2x blood lactate tests in an outpatients myopathy clinic. For the first I was told I had the highest result the doc had seen outside of ICU, 7.4 with normal range 0.6 - 2.0. Other refs I found suggested it was on par with what you'd see post-marathon. The repeat test...

Please don't take my comment as judgement on your experience and choices, its not. What is overwhelmingly reported in research and anecdotally in the Spondyloarthritis groups that I participate is a delay to diagnosis of years, sometimes decades, and usually in that time 3-4 or more different...

Consequence of COVID shutdown unfortunately. Prospective study now underway.

From this paper: From the earlier pilot study: The assumption seems to be that the delta granule storage pool deficiency being seen in such high numbers is acquired and a result of chronic inflammation.

Platelet Storage Pool Deficiency and Elevated Inflammatory Biomarkers Are Prevalent in Postural Orthostatic Tachycardia Syndrome by William T. Gunning, Paula M. Kramer, Jacob A. Cichock, Beverly L. Karabin, Sadik A. Khuder, Blair P. Grubb doi.org/10.3390/cells11050774...

This is related to David Systrom's earlier work (he's an author on the paper this article refers to). He's published other work using these investigations on ME/CFS patients, as well as Fibro and LC. There's also a related drug trial underway. We have discussed a few of these on here if you...

Its a shame this cohort wasn't tested for wider dysautonomia. But it was a larger sample size compared to previous studies and combined IENFD/QST/questionnaires to determine SFN more reliably.

Functional and structural impairment of small nerve fibers in patients suffering from hypermobile Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder Aurore Fernandez, Berengere Aubry Rozier, Mathieu Vautey, Chantal Berna, Rene Suter doi.org/10.1101/2022.02.17.22271061...

Its not particularly difficult/painful to take an earlobe capillary blood sample and estimate arterial blood gases from that - I had this done with a respiratory workup at a chest clinic. Suspect it was preferable to an arterial puncture! From that sample I got HbO2%, PaO2, PaCO2, H2CO3 and pH.