Search results

NHS GP's are also beginning to prescribe gepants now too (under direction from specialist clinics). Atogepant taken preventatively seems to be roughly as effective as the mabs and doesn't have the concern over long washout.

Sorry to hear that. I find my tolerance for standing and subsequent leg pain varies with exertion the previous day - some sort of PEM overlap. But it can fluctuate more significantly from other causes too. I recently started Atogepant for chronic migraine and that lowered the threshold...

Lower leg pain, which worsens on standing and gets particularly painful towards the end of the day, was a clear symptom for me from onset. It was something my POTS cardiologist noted early on before I understood the significance. It can be completely absent if I spend most of the day...

It's a rotten situation and this won't help much, but just in case it alleviates some worry: I have never had a problem getting GPs (across a couple of surgeries in different NHS areas) to continue prescribing ivabradine, pyridostigimine and slow sodium based off the initial cardiology...

My n=1 experience has been a bit different. I had a sleep study at major teaching hospital, terrible sleep quality but no obvious pathology discovered. The consultant gave the usual spiel about insomnia CBT but also recommended my GP prescribe Circadin before discharging me - definitely off...

The prof I saw in the UK explained my negative punch biopsy this way, along the lines of "well of course it was negative, your neuropathy is not length-dependent so you'd need biopsy samples from multiple locations to show it". Instead I was sent for a microneurography investigation...

I was thinking more along the lines of the apparatus effectively holding the person up when stationary. Obviously wouldn't be as significant as being strapped to a tilt table, but perhaps a closer analogy would be perching with legs dangling over a bar stool. Both can be absolute killers for...

I'd wonder if this could actually exacerbate OI in some cases, where engagement of muscle when upright is seemingly important to combat blood pooling.

I haven't pursued a diagnosis but have a strong suspicion of ADHD too. A GP in a migraine clinic brought it up and remarked that I might want to get assessed but it didn't go any further. 5/6 on ASRS v1.1 now. I've had a few prolonged partial remissions and relapses over the course of 30 years...

Yes - I'll drop you a PM so as not to go off-topic :)

I had a microneurography investigation with these guys, part of a POTS workup. It was pre-covid, I have a long history of ME/CFS & a negative IENFD skin biopsy. Without understanding the specifics, my headline findings appeared the same as here: spontaneous activity & abnormal recovery cycles...

This one is all too relevant to me, unfortunately. Diagnosed chronic migraine and probable SUNCT (a trigeminal autonomic cephalalgia), which developed in the past couple of years. I wonder how many of those deemed to have "cranial neuralgia" in this study were a missed SUNCT diagnosis, rather...

I've been taking it for about 7 years now, at a typical dose for MG (2x higher than normally used for POTS). I had side effects initially, the dose needs to be incremented very gradually, but they're not noticeable now. I was prescribed it off-label for POTS and have had a thorough workup in a...

From my perspective it was older doctors unwilling or unable to acknowledge modern terminology and consensus guidelines that have been around for well over 10 years now. To date I still don't think i've had anyone but my diagnosing Rheumy even use the correct terminology in correspondence.

I suppose it was that same attitude that led to the delay in my nr-AxSpA diagnosis and subsequent treatment with biologics that halted progession and significantly improved my QoL.

Some recent studies have shown a female predominance in nr-AxSpA. Whereas AxSpA is closer to 1:1, way down from the original assumptions of strong male predominance.

Thanks - all the time I can get prescription circadin I think that's the better option. The sleep clinic Neurologist said the supplement versions are less likely to be controlled and reliable doses. @oldtimer clinical trials for Circadin (prescription melatonin) were done and it is approved for...

Circadin (prescription melatonin) is something i've been keen to get off after being prescribed it post sleep study, maybe 6 years ago - at the time Neurology stuck to guidelines and suggested I come off it after a few months but the GP hasn't blinked. I don't need it to initiate/maintain sleep...

I'd recommend having a read up on chronic or "transformed" migraine - it's more nuanced than just "lots of episodic migraine". Possibly related to that are just the changes in presentation that can occur as episodic migraineurs age. I had strictly episodic & uncomplicated migraine for about 15...

That's about right for me too - no swollen glands or feeling "poorly" with a migraine. Sleepiness (different from fatigue) is more present with the migraine but not in PEM too. One crossover I do get though is they both tend to worsen autonomic function, i'll find being upright a lot less...