There’s so much good information in this post, Amy. I was very interested to hear about your SSDI hearing - I’m sure you were a great advocate for yourself! I was also interested in the info about Metformin and the statin/diabetes article. My doctor recently added Ozempic to treat my diabetes, while still continuing the Metformin. So far, my A1C has gone down and I’ve lost a few pounds. We’ll see how it goes. Looking forward to your next post! 😊
Thanks for reading and for sharing that, Paula. I’m hopeful these medicinal boosts we’re getting make a difference to our respective health 🤞🏻. I’ll be eager to hear how it all goes for you.
Some really great links and commentary here, thank you so much (and for the link to my statin/diabetes post). I definitely see worsening blood sugars in some people after Covid, and will keep lipids more in my radar now too. Probably a result of the direct wacky stuff like you said, and maybe less physical exercise possible with LC? And finally thanks for highlighting the Time article about chronic Lyme. 10-14% incidence would be really high but possible. I’m calling in a dose of doxycycline for my daughter as we speak since we pulled a tick off her <48 hours ago that really could have been engaged/dug in longer than we assumed. Anaplasma and babesia organisms can be transmitted from tick bites even faster than borrelia. Thanks for that nudge this morning!!
Thanks doc! Good thought about the lack of exercise. Though I saw something recently about metabolic changes with SARS-COV-2 that wasn’t specific to long haulers, so I guess we’ll see once there’s more research. It definitely shocked me because I’ve eaten a healthy Mediterranean diet for the last 15+ years and never had any of these things come back anywhere close to high.
Good luck with your daughter! Ply her with some yogurt or kombucha along with those antibiotics 😄.
Thanks as always for great info. I'm glad to hear the update on your hearing and wishing you the best outcome.
It's really interesting that there may be a link between blood sugar symptoms and (long) COVID. I just learned recently that waking up at night drenched in sweat as I do sometimes can be a blood sugar thing, potentially. I find it fascinating that all of these parts of the body are connected and work together.
Do you have long COVID or dysautonomia? One symptom is temperature regulation problems. But a lot of long haulers are also experiencing metabolic and hormone changes, so this could all be connected (as you said in your first comment!).
Hmm, I have symptoms more than explanations or a diagnosis I guess, sorry for being vague but I am not sure what I have. My hormones have been messed up / supplemented for a long time. I am glad to learn more about these things from your posts, thank you!
My husband can totally vouch for climate change wreaking havoc on his migraines; one flicker of the barometer and boom! The Migraine Monster is gnawing on his neurons once again. Long Covid isn't helping him either. The VA Neurologists are going to see if they can get him on Aimovig.
I've had a couple of migraines myself since getting Covid for the second time. They're not painful, but I get flashing things in my vision for about 5-10 minutes that make it all but impossible to see. Then they go away and, back to normal vision. Very strange...
Here's hoping that your hearing leads to profitable results.
Sounds like you are getting ocular migraines - you only get the aura but not the headache. My sister gets those. I have had migraines with aura since I was 16. It’s such a confusing symptom at first; you feel like you’re stroking out.
I was on Aimovig for over five years, only just taken off recently. It was enormously helpful in resolving the chronic daily migraines I had from 2010-2018. I hope your husband can get it and that it works for him.
So glad to hear it went as well as it could and sounds so promising ! Thanks (again) for the link to our newest substack member sharing her story and journey! I am obsessed with reading the stories and journeys of our fellow warriors.
I’ve angered myself reading the migraine increase news piece. “the research highlights a “concerning trend,” but why migraine disability is worsening is still unclear.”
In 2018 it was stated that neurologists fully expected to see a rise in severity and frequency of attacks …. Due to the launch of the smart phone! The global burden disease report (think from the same year) also reported an expectation on the rise and increase in attacks and disability by it.
It’s very British to blame it “on the weather” - we do that here a lot. And we are even doing it with disease and illness😆
How about we dig a little deeper and start exploring root cause and what can be done to counteract that? We’ll get a lot further when we do.
I hear you loud and clear, Amber! I had very similar frustrations during my eight years of chronic migraines. I don’t know about weather changes as a causality argument, but I do know that my migraines have always been far worse in the summer. And with summers getting hotter, this is poised to bring more suffering.
My headache doc took me off my monthly injectable (Aimovig) a few months ago, after being on it for over five years. My headaches have started creeping back in and they’re especially bad on the hot days. They come on so fast, too. It’s frustrating. Do you still have the occasional migraine?
They are definitely a trigger and a big one for many sufferers. I hadn’t been able to sit out in the heat (unless in the shade) for several years but that’s changed just very recently and it wasn’t anywhere near as bad as it for so many🙏
I’m sorry to hear they’re creeping back in at your end. I’m living with mild symptoms on a few odd days month by month but there is a huge uplevel coming in my healing so I’m hopeful I’ll be symptom free in the main going forward.
Attacks are much smaller and way less severe when they do happen. Reducing all the time (coming up to 6 years of this leg of my journey). I still believe I can heal myself fully, though it remains to be seen🙃 no harm in going for it anyway. I’m enjoying the best health I’ve ever experienced in my adult life as of this year.
It’s come with a blip I might add -a little adjustment period you might say…I’ve been 6 days symptomatic this month, 2 attacks on the smaller end last month. (I’ll take this as a blip any day though!) An uplevel always follows a downward turn I’ve found. I don’t take any medication apart from the occasional triptan which I only do if I feel it has a chance of working. My body was always saying no to it and my health only continued to deteriorate (was made to take 4 different types in the past before I was permitted to see a neurologist but in the end I listened to what my body was communicating). I hope it’s a little blip for you too as your body adjusts and continues to heal - only you can get an idea for sure.
I’m glad you persisted through the disability hearing-sending good vibes for a positive outcome. Love and miss you!! 🥰
Right back atcha 😘
There’s so much good information in this post, Amy. I was very interested to hear about your SSDI hearing - I’m sure you were a great advocate for yourself! I was also interested in the info about Metformin and the statin/diabetes article. My doctor recently added Ozempic to treat my diabetes, while still continuing the Metformin. So far, my A1C has gone down and I’ve lost a few pounds. We’ll see how it goes. Looking forward to your next post! 😊
Thanks for reading and for sharing that, Paula. I’m hopeful these medicinal boosts we’re getting make a difference to our respective health 🤞🏻. I’ll be eager to hear how it all goes for you.
Some really great links and commentary here, thank you so much (and for the link to my statin/diabetes post). I definitely see worsening blood sugars in some people after Covid, and will keep lipids more in my radar now too. Probably a result of the direct wacky stuff like you said, and maybe less physical exercise possible with LC? And finally thanks for highlighting the Time article about chronic Lyme. 10-14% incidence would be really high but possible. I’m calling in a dose of doxycycline for my daughter as we speak since we pulled a tick off her <48 hours ago that really could have been engaged/dug in longer than we assumed. Anaplasma and babesia organisms can be transmitted from tick bites even faster than borrelia. Thanks for that nudge this morning!!
Thanks doc! Good thought about the lack of exercise. Though I saw something recently about metabolic changes with SARS-COV-2 that wasn’t specific to long haulers, so I guess we’ll see once there’s more research. It definitely shocked me because I’ve eaten a healthy Mediterranean diet for the last 15+ years and never had any of these things come back anywhere close to high.
Good luck with your daughter! Ply her with some yogurt or kombucha along with those antibiotics 😄.
And best of luck with the hearing results, and congratulations on the well deserved nod from The Sick Times!
Fingers are crossed for you, Amy! And I've learned to listen to that little whisper of a voice. Because she's never effing wrong. LOL. xo
PEM sufferer here. It's for real! Takes two days to get over for me! Imagine- getting out of breath,dizzy and exhausted just from pulling dandelions!
So glad the hearing is done and now we wait (not patiently) for the only outcome that makes sense, in a mostly senseless world! Sending soft hugs🤗
Thank you, my sweet friend 💛 (yellow heart because I’m still thinking about how great you looked in that yellow dress!)
Thanks as always for great info. I'm glad to hear the update on your hearing and wishing you the best outcome.
It's really interesting that there may be a link between blood sugar symptoms and (long) COVID. I just learned recently that waking up at night drenched in sweat as I do sometimes can be a blood sugar thing, potentially. I find it fascinating that all of these parts of the body are connected and work together.
I’ve not heard that, Rey. Very interesting. I’ve been sweating in my sleep for years, even before COVID.
Me too, actually, have been sweating in my sleep for a long time. But it seems to have intensified recently.
Do you have long COVID or dysautonomia? One symptom is temperature regulation problems. But a lot of long haulers are also experiencing metabolic and hormone changes, so this could all be connected (as you said in your first comment!).
Hmm, I have symptoms more than explanations or a diagnosis I guess, sorry for being vague but I am not sure what I have. My hormones have been messed up / supplemented for a long time. I am glad to learn more about these things from your posts, thank you!
My husband can totally vouch for climate change wreaking havoc on his migraines; one flicker of the barometer and boom! The Migraine Monster is gnawing on his neurons once again. Long Covid isn't helping him either. The VA Neurologists are going to see if they can get him on Aimovig.
I've had a couple of migraines myself since getting Covid for the second time. They're not painful, but I get flashing things in my vision for about 5-10 minutes that make it all but impossible to see. Then they go away and, back to normal vision. Very strange...
Here's hoping that your hearing leads to profitable results.
Sounds like you are getting ocular migraines - you only get the aura but not the headache. My sister gets those. I have had migraines with aura since I was 16. It’s such a confusing symptom at first; you feel like you’re stroking out.
I was on Aimovig for over five years, only just taken off recently. It was enormously helpful in resolving the chronic daily migraines I had from 2010-2018. I hope your husband can get it and that it works for him.
So glad the hearing seems to have gone well! Here’s hoping 🤞
Thanks Cassie!!
So glad to hear it went as well as it could and sounds so promising ! Thanks (again) for the link to our newest substack member sharing her story and journey! I am obsessed with reading the stories and journeys of our fellow warriors.
I’ve angered myself reading the migraine increase news piece. “the research highlights a “concerning trend,” but why migraine disability is worsening is still unclear.”
In 2018 it was stated that neurologists fully expected to see a rise in severity and frequency of attacks …. Due to the launch of the smart phone! The global burden disease report (think from the same year) also reported an expectation on the rise and increase in attacks and disability by it.
It’s very British to blame it “on the weather” - we do that here a lot. And we are even doing it with disease and illness😆
How about we dig a little deeper and start exploring root cause and what can be done to counteract that? We’ll get a lot further when we do.
Off to go down-regulate now, tar rah😉
I hear you loud and clear, Amber! I had very similar frustrations during my eight years of chronic migraines. I don’t know about weather changes as a causality argument, but I do know that my migraines have always been far worse in the summer. And with summers getting hotter, this is poised to bring more suffering.
My headache doc took me off my monthly injectable (Aimovig) a few months ago, after being on it for over five years. My headaches have started creeping back in and they’re especially bad on the hot days. They come on so fast, too. It’s frustrating. Do you still have the occasional migraine?
They are definitely a trigger and a big one for many sufferers. I hadn’t been able to sit out in the heat (unless in the shade) for several years but that’s changed just very recently and it wasn’t anywhere near as bad as it for so many🙏
I’m sorry to hear they’re creeping back in at your end. I’m living with mild symptoms on a few odd days month by month but there is a huge uplevel coming in my healing so I’m hopeful I’ll be symptom free in the main going forward.
Attacks are much smaller and way less severe when they do happen. Reducing all the time (coming up to 6 years of this leg of my journey). I still believe I can heal myself fully, though it remains to be seen🙃 no harm in going for it anyway. I’m enjoying the best health I’ve ever experienced in my adult life as of this year.
That’s amazing to hear! Can’t wait to hear more too about this impending uplevel 🩶
It’s come with a blip I might add -a little adjustment period you might say…I’ve been 6 days symptomatic this month, 2 attacks on the smaller end last month. (I’ll take this as a blip any day though!) An uplevel always follows a downward turn I’ve found. I don’t take any medication apart from the occasional triptan which I only do if I feel it has a chance of working. My body was always saying no to it and my health only continued to deteriorate (was made to take 4 different types in the past before I was permitted to see a neurologist but in the end I listened to what my body was communicating). I hope it’s a little blip for you too as your body adjusts and continues to heal - only you can get an idea for sure.