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Haven't had a chance to read this paper yet but I do recall Stewart et al made observations in POTS research suggesting that unexpected and significant oscillations in CBF pressure/flow were associated with symptoms in that cohort. I wonder if not capturing, or averaging in some way, these...

I thought it interesting that they made reference specifically to co-morbid POTS in the CCC-guided patient selection. Would seem to me like including those with POTS makes drawing any conclusions harder, given the many known diseases and issues that present with POTS beyond just CFS/ME. I doubt...

I'm particularly upset about us abandoning the Erasmus program too.

The effects of this are already being felt, unfortunately. Myself and all my colleagues lost our jobs at a University research centre last year. The group had focused efforts on a European agency for funding because of ever dwindling UK investment. When the Brexit vote happened that agency...

Hi @lunarainbows & @ProudActivist, I'll PM you both the doctors names but all this is being done at Kings College Hospital, Denmark Hill. The normal process is to see their nerve clinic (apparently one of only 5 centres in UK specialising in SFN) for a skin punch biopsy. If the result is...

The other thing that's pretty common in POTS and can have a big impact on investigation is changes with time of day. Any good protocol should take measurements first thing in the morning, before any fluids. The tilt test I took above was in the afternoon and my heart rate only jumped 37bpm...

You've actually described the classic POTS experience there. Movement & muscle pump seems to aid venous return and keep symptoms at bay. Many people with POTS can walk around at a brisk pace for some time before coming symptomatic, a shorter time at a slower pace (shopping really gets me!), an...

This is your classic POTS with orthostatic hypertension blood pressure response on tilt table, it was not a fun experience :yuck: I was on beta blockers at the time too! What a mess haha. Ryan

Hi @NelliePledge, If you manage to get yourself into a good NHS specialist clinic for POTS/autonomic dysfunction they will definitely be aware and note this during investigation, usually tilt table or any other orthostatic test with beat-to-beat BP monitoring. A regular cardiologist...not so...

N=1 anecdote here but my partners mum, who has quite severe treatment-refractory RA + immunodeficiency, is doing really well on JAK inhibitors after many failed previous attempts. I'm a bit jealous she can just pop a pill for her biologics when I still have to stab myself in the leg! :laugh:

I saw this reported in another article recently. I don't know all the details and certainly don't have any interest in defending the government but it didn't seem quite as shocking as the headline would suggest. An Amazon source said the 'health data' amounted to what was freely available on...

This is quite interesting to me because very early in my illness I experienced that feeling of non-restorative sleep and feeling like death on waking, but now it is a very rare occurrence indeed. Now I almost always wake up feeling 'normal' and then hit a wall after activity. How little activity...

I think this is actually best described in a medical setting as somnolence. What a lay person would describe as drowsiness or sleepiness. Fatigue is different from somnolence and would be better related to as tiredness or a lack of energy.

With the benefit of hindsight I would recognise all of the symptoms described by the definitions, at a mild level. But as you say, back then it would just be assumed there was regular and unknown viral infection as explanation.

No problem. I think normally a benzodiazepine like Midazolam would be used. Respiratory depression is a well known side effect.

I'm possibly talking complete rubbish but I thought it was a sedative that you were given before the hypnotic that puts you to sleep. Muscle relaxer comes later to stop you fighting the forced ventilation?

Something else worth considering might be if eating is changing your breathing patterns. Would likely have some impact if you have OI and tend to breathe excessively, as many of us do without realising it. That could certainly bring about a rapid improvement in symptoms like dizziness.

I found its a good way to scare nurses and GPs, I had a 24hr BP monitor hang around 180/100 most of the evening, despite being relaxed on the couch. It hit 220/140 when walking from the car park to the waiting room the next morning to hand it back. I got a shitty response from the nurse when I...

A tilt result positive for POTS combined with other relevant clinical symptoms should also lead to further investigations. Presumably in an ideal world these would be performed regardless, but my experience has been that you need the extra weight of evidence to justify further testing. Not to...

From the report: Post-concussive POTS? This is not at all news for anyone versed in dysautonomia research.