Wow… lots of links!! I’ll have to return to read the second half, as my leaker brain just went fritz.
I am so disappointed to hear that trolls have told you such horrid things. I hope that you block them and move away from people who know so little about what it means to fully be alive.
And YES to asking people to stop asking “how are you” ❣️. I have had to tell everyone I love that this question is not helpful. Instead, it helps to have them say, I’m thinking of you and sending love, or do you need anything from the store? Or I’m going to be out and about today, could I pop by and vacuum for you? Or would you like me to bring you a latte and drop by for a short game of cards? ….. anything except how are you, how’s the pain. When people forget and ask me, I softly say, no change, and thank you for caring, now tell me what’s happening with you.
Always lots of links haha! And there's overflow each month, where I cut it back to make it a little less long for peoples' inboxes.
Being online necessarily brings those kinds of angry people your way, but yes it's awful to get emails or replies like that. I got them in a different vein just from writing about the history of food, so now that I've moved into something like science/health, it's more prevalent.
Wonderful stuff as always. Thank you for all of it. Quick note that Hakai is not *totally* gone, thank goodness. BioGraphic folded in Hakai’s editorial staff and ran a successful fundraiser to bring on many of its journalists too — and broadened its remit to include coastal and marine issues. Maybe a wee bright spot for you. 🐋
Thank you Rebecca! A reader named Andrea sent me the link on BioGraphic in reply to yesterday's newsletter, and I learned as you said that they were folding in Hakai's staff. I'm thrilled! Thank you for the comment, and for reading.
The "More Than Things" and "What Thieves Did Not Steal" links reminded me of a book I read a few years ago. Old Records Never Die by Eric Spitznagle follows the author's journey to find some of his old records - not just a new copy of that LP, but the exact LP he sold in the 90s. "The Bon Jovi record with his first girlfriend's phone number scrawled on the front sleeve. The KISS Alive II he once shared with his little brother. The Replacements Let It Be he’s pretty sure, 20 years later, would still smell like weed."
As a nearly lifelong insomniac, I’m fascinated to read about brain cleansing and Ambien’s potential interference - I knew Ambien changed the brain’s natural sleep cycles, but not how.
It is fascinating, I agree. I used to be in the same boat — when people would ask if I had one wish, it was just to sleep, please pleaaase let me know sleep. In my case, it ended up being a mast cell disorder that was my problem. Once I treated that, I started sleeping again. Feel free to message any time if you want to compare sleep help notes!
I find I'm sleeping the best when I take antihistamine in the morning. That seems to give me enough tiredness by the evening. It's about 45min of deep sleep which Fitbit considers below average but I've had periods with less.
I'd really enjoy more on that topic from you but it doesn't really make sense to ask you to explain separately to different people. I'll just be patiently waiting. You'll get to it when you can.
Thank you Merike. Standard treatment for MCAS patients is to take antihistamines twice daily, H1s and H2s. I do have my MCAS protocol and my research notes here: jodiettenberg.com/mast-cells
For sleep, low dose melatonin 2-3 hours before bed + Quercetin alongside my evening antihistamines have helped the most, among other changes that (like you said!) I hope to write about at some point.
H2 medication isn't unfortunately available here. I've also tried taking H1 twice daily but sleep wise it worked less. The one I'm taking has a half life of about 24h so perhaps this sort of fluctuating blockade just suits me better. After all histamine is naturally higher during night too.
I'll reread your page it seems you've updated it recently. I don't know how you can manage so much, but thank you!
Ah right, we'd discussed elsewhere — my apologies, I forgot. The H1s I take are 'meant' for 1x a day as well, but dosing for MCAS is more frequent to create a full histamine blockade. Mast cells also have H2 receptors on them, and for me (with a spinal CSF leak) adding the H2 blocker helped my nerve pain considerably. But we can only do what is accessible to us, and I know you're more researched than almost anyone!
Indeed, histamine peaking in the night is part of why treating MCAS treatment helped me sleep.
Thank you for the kind words. I have a few more studies to add to the MCAS page but we're hiring a new ED at the Foundation so that's been my priority. Hope to get to it soon <3
Ah sorry to hear it! For me it was “long dengue” — MCAS popped up after I got dengue fever many years ago. All my research notes and what I take are here: jodiettenberg.com/mast-cells. Happy to chat further about any of it
This monthly curated linkfest is my favorite place on the internet for a deep, cleansing brain massage.
Hah, can CAE induce waste clearing too? Thanks for reading Kira! 🤍
I am so sure it can and does!! Thanks Jodi, as usual amazing
Thank you Jo! <3
Wow… lots of links!! I’ll have to return to read the second half, as my leaker brain just went fritz.
I am so disappointed to hear that trolls have told you such horrid things. I hope that you block them and move away from people who know so little about what it means to fully be alive.
And YES to asking people to stop asking “how are you” ❣️. I have had to tell everyone I love that this question is not helpful. Instead, it helps to have them say, I’m thinking of you and sending love, or do you need anything from the store? Or I’m going to be out and about today, could I pop by and vacuum for you? Or would you like me to bring you a latte and drop by for a short game of cards? ….. anything except how are you, how’s the pain. When people forget and ask me, I softly say, no change, and thank you for caring, now tell me what’s happening with you.
Always lots of links haha! And there's overflow each month, where I cut it back to make it a little less long for peoples' inboxes.
Being online necessarily brings those kinds of angry people your way, but yes it's awful to get emails or replies like that. I got them in a different vein just from writing about the history of food, so now that I've moved into something like science/health, it's more prevalent.
((Hugs)). I cannot imagine what is causing those trolls to be so afraid.
Wonderful stuff as always. Thank you for all of it. Quick note that Hakai is not *totally* gone, thank goodness. BioGraphic folded in Hakai’s editorial staff and ran a successful fundraiser to bring on many of its journalists too — and broadened its remit to include coastal and marine issues. Maybe a wee bright spot for you. 🐋
Thank you Rebecca! A reader named Andrea sent me the link on BioGraphic in reply to yesterday's newsletter, and I learned as you said that they were folding in Hakai's staff. I'm thrilled! Thank you for the comment, and for reading.
The "More Than Things" and "What Thieves Did Not Steal" links reminded me of a book I read a few years ago. Old Records Never Die by Eric Spitznagle follows the author's journey to find some of his old records - not just a new copy of that LP, but the exact LP he sold in the 90s. "The Bon Jovi record with his first girlfriend's phone number scrawled on the front sleeve. The KISS Alive II he once shared with his little brother. The Replacements Let It Be he’s pretty sure, 20 years later, would still smell like weed."
Here's a review.
https://www.theguardian.com/books/2016/apr/21/old-records-never-die-eric-spitznagel-review-high-fidelity
Thanks Neil! Will read the review, appreciate you sending!
As a nearly lifelong insomniac, I’m fascinated to read about brain cleansing and Ambien’s potential interference - I knew Ambien changed the brain’s natural sleep cycles, but not how.
It is fascinating, I agree. I used to be in the same boat — when people would ask if I had one wish, it was just to sleep, please pleaaase let me know sleep. In my case, it ended up being a mast cell disorder that was my problem. Once I treated that, I started sleeping again. Feel free to message any time if you want to compare sleep help notes!
I find I'm sleeping the best when I take antihistamine in the morning. That seems to give me enough tiredness by the evening. It's about 45min of deep sleep which Fitbit considers below average but I've had periods with less.
I'd really enjoy more on that topic from you but it doesn't really make sense to ask you to explain separately to different people. I'll just be patiently waiting. You'll get to it when you can.
Thank you Merike. Standard treatment for MCAS patients is to take antihistamines twice daily, H1s and H2s. I do have my MCAS protocol and my research notes here: jodiettenberg.com/mast-cells
For sleep, low dose melatonin 2-3 hours before bed + Quercetin alongside my evening antihistamines have helped the most, among other changes that (like you said!) I hope to write about at some point.
H2 medication isn't unfortunately available here. I've also tried taking H1 twice daily but sleep wise it worked less. The one I'm taking has a half life of about 24h so perhaps this sort of fluctuating blockade just suits me better. After all histamine is naturally higher during night too.
I'll reread your page it seems you've updated it recently. I don't know how you can manage so much, but thank you!
Ah right, we'd discussed elsewhere — my apologies, I forgot. The H1s I take are 'meant' for 1x a day as well, but dosing for MCAS is more frequent to create a full histamine blockade. Mast cells also have H2 receptors on them, and for me (with a spinal CSF leak) adding the H2 blocker helped my nerve pain considerably. But we can only do what is accessible to us, and I know you're more researched than almost anyone!
Indeed, histamine peaking in the night is part of why treating MCAS treatment helped me sleep.
Thank you for the kind words. I have a few more studies to add to the MCAS page but we're hiring a new ED at the Foundation so that's been my priority. Hope to get to it soon <3
ooh! i have MCAS i recently learned (part of long covid) - so very curious what ended up working for you mast cell wise
Ah sorry to hear it! For me it was “long dengue” — MCAS popped up after I got dengue fever many years ago. All my research notes and what I take are here: jodiettenberg.com/mast-cells. Happy to chat further about any of it