Bejeeber

For this to be occurring at all - let alone after only 2.5 months (??!!) .........seems a real miracle. What an incredible recovery so far, and what a harbinger of future ability to freely move about - she certainly seems to be determined to make it so, and this event looks like a huge one!!!

Wow² regarding mast cells.

Wow, hadn't been aware of EDS, but a quick googling reveals there are various types of it, and I have the same hypermobile left elbow as this kid, plus other related symptoms. I imagine that hypermobility in just one elbow, not other joints, might not impress an EDS diagnostician so much though. From Google What are the specific symptoms of Ehlers-Danlos syndrome? People with hEDS may have: joint hypermobility. loose, unstable joints that dislocate easily. joint pain and clicking joints. extreme tiredness (fatigue) skin that bruises easily. digestive problems, such as heartburn and constipation. dizziness and an increased heart rate after standing up.

....and not taken as such...i was riffing on your comments that are near universally true in clusterville. What Jon said - especially since @BoscoPiko could easily be deemed LLTELASN (least likely to ever leave a snide comment).

I wouldn't discount techniques for stimulating the vagus nerve as worthy experiments. I know Wim Hof claims that submersion (or showering) in cold water has a big vagus effect. I can't claim to know whether that is a legit scientific fact though. Then there's one gal on Tik Tok (which granted could really impact credibility!) who suggests placing an ice pack right on the middle of your chest as the instant/convenient/super direct way to get the same kind of vagus thing going on (in that case it was was presented in the context of relieving anxiety and insomnia).

Ah ha! This sounds to me like one highly plausible theory from our light years ahead CHfather. Like your doc could have gotten his CH and his HC transposed.

Physician's Desk Reference (PDF) perhaps? [Edit: PDR, doh]

Wow, that is one terrifically misinformed PCP - what a nightmare.

A bit off topic, but a super weird side effect of Gabapentin (Neurontin) can be suicidal ideation, even for those who have never had such tendencies prior. For anyone who might try gabapentin, I think it is good to be aware of this, to be prepared to realize any such thoughts are the drug talking, and to set them solidly to ignore (while proceeding to taper off of it).

Maybe you could still get it in there if you dress up as orderlies and wheel it in on a stretcher with a sheet over it.

Ah, but of course it applies to shorter stays also - thanks @eileenbunny. I musta previously somehow ended up at the reservation$ site while no longer having arrived there via the special rate link. That was super dum.

@eileenbunnyJust checkin' in case my 5% chance of attending were to pan out - it looks like the special hotel rate applies if you stay the 5 full nights, but not for something like a 3 night stay. Do I have that right?

Hi @KIF! The side switching, as unlikely as it seems to those of us who've only had attacks on one side, definitely does happen to others, many have reported it. From your description, I don't blame your ER doctor at all for suspecting cluster.

I think sometimes when he we mention Batch by his forum name @xxx in a post, he may be more likely to see a notification of it.

"....with BOL-148 we have to conduct an ascending dose Phase I trial, which we’ll be starting next quarter. We plan to share top line data from the study in the first quarter of next year, and then we’ll move straight onto Phase II..." So highly appreciative that this is occurring, while also remaining exceptionally jaded (after so many false starts and disappointments) regarding the question of whether we will ever get our hands on this non hallucinogenic super LSD / super busting substance that has clinical trials dating back to the 1950's.

I noticed there was a conspicuous absence of mention of BOL-148 though.

Interesting article indeedy - I had seen it too, and had been 'planning' on posting it here. Once again @CHfather beats me to the punching festivity.

I see what you did there combining hitch hiking and Atlantic crossing into one image. This thread is becoming so bloody brilliant, medals should be bestowed for it, if we don't get kicked the feck off of here first.

I hear the Atlantic is quite refreshing this time of year for a dip / crossing. Then just thumb it on over to Chi-town once you're ashore stateside and you're all good.

I've met aplenty at previous conferences, and can testify it's a crazy-good experience, not to be missed for anyone who can swing it.

Ooh nice find - gonna stick this at the top of my to watch/listen to pile, considering the subject and the interviewee.

Dude I have those too. (Not really bad tho)

I WANNA GO. But external circumstances are now making for about a 5% chance of being able to pull it off.

While acknowledging the major recovery challenge still ahead with the physio, she looks like she's doing so well at this all-tubes-be-gone, out of the woods stage!