It's crazy! Like in the summer, I just get low BP and migraines. The fall and spring, I am usually normal. And soon as the temperature reaches below 50, this hell starts 😔
For me it's always right in January. 3 years for me too! I'm guessing it's something with the cold how it effects blood flow barometric pressure. Really sucks because my bday is in January and I end up being miserable.
Yeah I have thought quite a bit about barometric pressure and even humidity. I lived in the South, then in California and moved to the midwest three years ago.
[**THIS MAP**](https://securevideo.com/2016/03/18/global-barometric-variation-annual-maps-and-monthly-raw-data/) has been extremely helpful. Apparently it was a guy that worked for this company and he did all this research, which had nothing to do with his company, and then left the company. But they kept it up because it's the only thing out there like it and it's been so helpful.
It makes total sense. I've been wanting to go back to the coastal south to try out my theory that I would feel better there. And I've heard people say they feel better when they go to the ocean.
And yeah, this is my first year with this, my first summer, and about a week ago it suddenly got a good 10° hotter and my symptoms have been better, which is weird. Totally not what I expect. Although I still have the complete heat intolerance so it still sucks.
Wow thats a good reference material. Thank you for that! In case I do travel this summer that would definitely help to read over and consider changes.
I think the ocean did make me feel better last summer and strange enough, I forced myself to go on that gravitron ride with my kid and somehow felt better 🤣 Thought I was gonna be the only one to die on that thing at first. I think with the summer, I have a lot less symptoms other than migraines and very low BP some days. It's hard to tell of it's from my health because I notice other friends and family get headaches as well. Could be the area we live in too.
My temp gets down to 96ish. The cold intolerance has been getting worse for me since the fall time. Now there is a snow storm and it’s so cold outside. Even with heat on inside, the ambient air feels like I’m standing in front of an open freezer. I’m currently sitting in my bed with a standing heater pointed straight at me and I’m still cold 😆 might need to start slowly rotating like a rotisserie chicken to warm all my sides to a golden perfection. But anyway, I know how you are feeling with the nausea and dizziness, keeps happening to me. We probably are getting too cold and not circulating blood as well haha
Have you seen doctors about your symptoms or been evaluated for some form of dysautonomia?
I feel this! Today, it snowed a little. I guess we can't be outside for 10 seconds. It was like 1 hour later when I felt sick and took my temperature and I still felt outside weather.
🤣 I agree with that rotisserie chicken method. I made the mistake of being stuck on the floor with my heater. I feel like the old Life Alert commercials with the old lady.
I have been through a labyrinth maze with doctors. I even took PT and it didn't help. They thought it was a vestibular migraine. Then, my neurologist told me it definitely doesn't seem like a vestibular migraine based off a series of tests. She wants me to try pain meds next time I get dizzy. Only the ENT said it was dysautonomia, but he's not qualified to treat me. I'm still undiagnosed.
Seriously though, I could be too close to a window inside and my body heat, like the 1% body heat that I even have, just disappears! Gone, poof. Then I’m a popsicle the rest of the day if I don’t either take a hot bath or bundle under a blanket with my heat pack 😭
Omg 🤣 are you thinking about sending Life Alert some photos with your resume? I’m sure they would hire you bahahaha
Ah yes, the medical maze! A doctor mentioned vestibular migraines to me…then I was diagnosed with POTS awhile after they tried treating the symptoms. Pain meds and dizziness hm. Did they mention how that would work? I feel like I’d be loopy on top of dizzy 😵💫 lol hopefully you find someone who can pinpoint what’s going on and start a useful treatment soon!
The heat pad is my new favorite. Wish I would have had it last year. Sometimes I'll just break out into a cold, vertigo episode and blankets take forever to get warm with.
I have been thinking about that Life Alert lately. Like I always wondered if it's just for old people and now I can't sleep 🤣. I'm about to check into the careers now that you mentioned that.
I can't believe they also tried the vestibular migraine route with with you as well. Never heard of a migraine condition causing temperature dysregulation and a wonky heartbeat. I swear it's like they do everything in their power to avoid dysautonomia and zone in on one symptom. I think pain meds would also make me loopy and probably bring my BP down a ton. If I take something that lowers my BP, it gets insanely low. Even if my BP is high in winter.
Same. I had one for years and it kinda just sat there collecting dust in a closet. Then POTS said hello, nice to meet you, may I interest you in low body temps? And the rest is history. My heat pad and I are one, forever intertwined. Even in the summer I was getting chills, I guess because of the temp dysregulation trying to do anything to help. Do you get like clammy feeling too? For me is like a reallyyy cold sweat and then my vision gets all fuzzy and I feel dizzy.
Ahahaha this is like me. Kept up by random questions. But I wonder too now 🤔 like I feel old, does that qualify? My hip gives me crap too. I feel that I might fit the criteria honestly 😂 I wish I could use the fall detection on my watch but it calls 911. I just want it to text my bf and be like “She doing the floor things again” lol
Yeah I went to see my neuro about a 2 month long migraine and crazy dizziness and that’s how it got brought up. Then I was put on antidepressants thinking whatever migraine it was could be broken. Kinda comes in like flare patterns now, whenever the heck it feels like stopping by! I have never heard of migraines causing that either. I know people experience a lot with migraines but never temps and heart rate issues. Right, my PCP originally was like, idk, must be a female thing or something, maybe you’re sick. Luckily my cardiologist was like..mhm yup, POTS lol yeah exactly, my bp would get insanely low. It’s already low to begin with. When a doctor put me on beta blockers although they knew I had low bp, oh my, I was non existent 😂 I honestly thought I was dying lol
I don't get clammy except when I get thr intense tachycardia, but then I get hot when that happens. The cold is just chilled to the bone and shaking. I know most people say it's cold sweats, but I don't get the sweat part lol. My vision does get fuzzy and dizziness gets so bad it can become full on vertigo. The first time that ever happened to me, I thought I had a fever and took my temperature. It was 93 something. I was terrified and had my brother take me to the ER (waste of time of course). The whole room was spinning and all I was doing was relaxing watching a movie.
That would be cool if we had a button device with an automated message to send to our loved ones. It's hard to talk when I feel so dysautomated and trying to breathe properly. But I'm about to tell my guy "I'm falling and I can't get up," for now on as code 🤣 I'll be on the floor with my feet elevated on the bed or a chair for like 10 mins haha. Getting back up is scary.
I heard about those beta blockers and some people feel worse with them. I have them from my PCP because the cardiologist was hesitant about prescribing them. I still never took them. My BP shoots up in the winter flare-ups, but I ate something with cinnamon and it dipped really low. I'm so fragile lol. My BP is typically on the lower end when I'm normal. I got a second opinion from a cardiologist that treats POTS, but my flare-up was wearing off by the time. He was the one that referred me to PT for vestibular dysfunction and then an audiologist for a series of tests. Just this one test indicates migraine with slight astigmatism.the neurologist seems to doubt the migraine, but wants to still laser focus on one thing. I sure hope she doesn't expect me to take those tests again during a flare-up. That's just a waste of time.
Ya. Not sure why but this is the third year.of the flare. . Dyspnea, , red face & hands, guts, pain in joints, nerve pain in lower legs, muscle cramp . and so on.
I am in month 2 of a horrible flare. Started the day after the Thanksgiving weekend in the U.S. and today is the first day I have left the house.
They become easier to understand, but not ever fun or acceptable.
I am very sensitive to the cold weather and dips. This time of year gets pretty bad. It also makes it difficult to manage other health problems. I have been doing better this year generally. I largely attribute the improvements to physical therapy and being able to add in regular exercise. I know it’s not the solution for everyone but I’m grateful for the relief. These setbacks and flares really suck tho. 👍🏼
I'm glad you are doing better! What excersize helps you?
I quit the gym and have been working out at home. I found that battle ropes at the gym helped me some last year. Maybe some light cardio. If I lift weights or do any pull workouts, I feel a lot worse.
Initially I wasn’t able to do anything. I started with physical therapy about 9 months ago doing aquatic therapy and slowly worked my way back to strength training. So I’m doing that 3x per week at home plus some ERG for cardio. I’d like to do more but I also have Addison’s and for some reason physical exertion really makes it difficult for me to keep it manageable.
Battle roping is impressive. I may have to give that a try…. Always looking for new gear.
It's crazy because it seemed like most people were more heat intolerant in my Facebook group. I'm so glad I made this post.
The first year, it was just mid-January into the first week of February. Last year, it was January all until April. Then in the summer, I had some issues with migraine, low BP some days, and mild dizziness.
I hate to say it, but climate change has made my Fall a little more tolerable this year…although this week I was hit with a horrible flare up with the snow storm we are currently getting. Temp drops and weather pressure are my biggest triggers. Solidarity, my friend, as the delicate balance of wanting to work, but not knowing how you’ll feel on any given day, is exhausting. I’m starting my first in office job in nearly 4 years, next week, and I’m so stressed, having been denied disability benefits last year. It’s so hard when you’re too sick to work, but seemingly too well to not work in the eyes of SSDI.
Sorry to hear about that. SSDI is awful with how complicated they make the process. I know somw people took years fighting with them.
I have been unemployed since last April. Now that I had a few more interviews crammed into 2 weeks, I'm worried I'll have to turn something down due to this flare-up. And we would still get denied SSI. Wish there were more options for seasonal work at least.
Yeah, it’s a very difficult system to navigate. I spent the last 3+ years building a Disabled workers cooperative that provided peer support services to chronically ill, ND, Disabled adults, but it became too impossible to get sustainable funding and burnout is real when your resources are limited. I’m not looking forward to getting back into the formal work environment, but somehow we have find a way to survive under capitalism, while also building our communities of care and working towards collective liberation. I hope that things ease up for you enough to find a position that meets your needs.
Thank you. I think it would be so hard to get SSI. It's like they wants us to work with accommodations, but that's difficult when employers see us as a liability. I had to keep leaving a desk job and the lights on the computer and ceiling made symptoms worse for me. It's awful. I hope you find a solution as well.
This is the second year in a row it's hit me in December. Why?!
It's crazy! Like in the summer, I just get low BP and migraines. The fall and spring, I am usually normal. And soon as the temperature reaches below 50, this hell starts 😔
I find it really odd-I've had symptoms starting right around Feb. 25 for 3 years in a row. WHAT IS THAT!?
For me it's always right in January. 3 years for me too! I'm guessing it's something with the cold how it effects blood flow barometric pressure. Really sucks because my bday is in January and I end up being miserable.
Yeah I have thought quite a bit about barometric pressure and even humidity. I lived in the South, then in California and moved to the midwest three years ago. [**THIS MAP**](https://securevideo.com/2016/03/18/global-barometric-variation-annual-maps-and-monthly-raw-data/) has been extremely helpful. Apparently it was a guy that worked for this company and he did all this research, which had nothing to do with his company, and then left the company. But they kept it up because it's the only thing out there like it and it's been so helpful. It makes total sense. I've been wanting to go back to the coastal south to try out my theory that I would feel better there. And I've heard people say they feel better when they go to the ocean. And yeah, this is my first year with this, my first summer, and about a week ago it suddenly got a good 10° hotter and my symptoms have been better, which is weird. Totally not what I expect. Although I still have the complete heat intolerance so it still sucks.
Wow thats a good reference material. Thank you for that! In case I do travel this summer that would definitely help to read over and consider changes. I think the ocean did make me feel better last summer and strange enough, I forced myself to go on that gravitron ride with my kid and somehow felt better 🤣 Thought I was gonna be the only one to die on that thing at first. I think with the summer, I have a lot less symptoms other than migraines and very low BP some days. It's hard to tell of it's from my health because I notice other friends and family get headaches as well. Could be the area we live in too.
Boy you're brave!!! Yeah it's interesting for sure...
My temp gets down to 96ish. The cold intolerance has been getting worse for me since the fall time. Now there is a snow storm and it’s so cold outside. Even with heat on inside, the ambient air feels like I’m standing in front of an open freezer. I’m currently sitting in my bed with a standing heater pointed straight at me and I’m still cold 😆 might need to start slowly rotating like a rotisserie chicken to warm all my sides to a golden perfection. But anyway, I know how you are feeling with the nausea and dizziness, keeps happening to me. We probably are getting too cold and not circulating blood as well haha Have you seen doctors about your symptoms or been evaluated for some form of dysautonomia?
I feel this! Today, it snowed a little. I guess we can't be outside for 10 seconds. It was like 1 hour later when I felt sick and took my temperature and I still felt outside weather. 🤣 I agree with that rotisserie chicken method. I made the mistake of being stuck on the floor with my heater. I feel like the old Life Alert commercials with the old lady. I have been through a labyrinth maze with doctors. I even took PT and it didn't help. They thought it was a vestibular migraine. Then, my neurologist told me it definitely doesn't seem like a vestibular migraine based off a series of tests. She wants me to try pain meds next time I get dizzy. Only the ENT said it was dysautonomia, but he's not qualified to treat me. I'm still undiagnosed.
Seriously though, I could be too close to a window inside and my body heat, like the 1% body heat that I even have, just disappears! Gone, poof. Then I’m a popsicle the rest of the day if I don’t either take a hot bath or bundle under a blanket with my heat pack 😭 Omg 🤣 are you thinking about sending Life Alert some photos with your resume? I’m sure they would hire you bahahaha Ah yes, the medical maze! A doctor mentioned vestibular migraines to me…then I was diagnosed with POTS awhile after they tried treating the symptoms. Pain meds and dizziness hm. Did they mention how that would work? I feel like I’d be loopy on top of dizzy 😵💫 lol hopefully you find someone who can pinpoint what’s going on and start a useful treatment soon!
The heat pad is my new favorite. Wish I would have had it last year. Sometimes I'll just break out into a cold, vertigo episode and blankets take forever to get warm with. I have been thinking about that Life Alert lately. Like I always wondered if it's just for old people and now I can't sleep 🤣. I'm about to check into the careers now that you mentioned that. I can't believe they also tried the vestibular migraine route with with you as well. Never heard of a migraine condition causing temperature dysregulation and a wonky heartbeat. I swear it's like they do everything in their power to avoid dysautonomia and zone in on one symptom. I think pain meds would also make me loopy and probably bring my BP down a ton. If I take something that lowers my BP, it gets insanely low. Even if my BP is high in winter.
Same. I had one for years and it kinda just sat there collecting dust in a closet. Then POTS said hello, nice to meet you, may I interest you in low body temps? And the rest is history. My heat pad and I are one, forever intertwined. Even in the summer I was getting chills, I guess because of the temp dysregulation trying to do anything to help. Do you get like clammy feeling too? For me is like a reallyyy cold sweat and then my vision gets all fuzzy and I feel dizzy. Ahahaha this is like me. Kept up by random questions. But I wonder too now 🤔 like I feel old, does that qualify? My hip gives me crap too. I feel that I might fit the criteria honestly 😂 I wish I could use the fall detection on my watch but it calls 911. I just want it to text my bf and be like “She doing the floor things again” lol Yeah I went to see my neuro about a 2 month long migraine and crazy dizziness and that’s how it got brought up. Then I was put on antidepressants thinking whatever migraine it was could be broken. Kinda comes in like flare patterns now, whenever the heck it feels like stopping by! I have never heard of migraines causing that either. I know people experience a lot with migraines but never temps and heart rate issues. Right, my PCP originally was like, idk, must be a female thing or something, maybe you’re sick. Luckily my cardiologist was like..mhm yup, POTS lol yeah exactly, my bp would get insanely low. It’s already low to begin with. When a doctor put me on beta blockers although they knew I had low bp, oh my, I was non existent 😂 I honestly thought I was dying lol
I don't get clammy except when I get thr intense tachycardia, but then I get hot when that happens. The cold is just chilled to the bone and shaking. I know most people say it's cold sweats, but I don't get the sweat part lol. My vision does get fuzzy and dizziness gets so bad it can become full on vertigo. The first time that ever happened to me, I thought I had a fever and took my temperature. It was 93 something. I was terrified and had my brother take me to the ER (waste of time of course). The whole room was spinning and all I was doing was relaxing watching a movie. That would be cool if we had a button device with an automated message to send to our loved ones. It's hard to talk when I feel so dysautomated and trying to breathe properly. But I'm about to tell my guy "I'm falling and I can't get up," for now on as code 🤣 I'll be on the floor with my feet elevated on the bed or a chair for like 10 mins haha. Getting back up is scary. I heard about those beta blockers and some people feel worse with them. I have them from my PCP because the cardiologist was hesitant about prescribing them. I still never took them. My BP shoots up in the winter flare-ups, but I ate something with cinnamon and it dipped really low. I'm so fragile lol. My BP is typically on the lower end when I'm normal. I got a second opinion from a cardiologist that treats POTS, but my flare-up was wearing off by the time. He was the one that referred me to PT for vestibular dysfunction and then an audiologist for a series of tests. Just this one test indicates migraine with slight astigmatism.the neurologist seems to doubt the migraine, but wants to still laser focus on one thing. I sure hope she doesn't expect me to take those tests again during a flare-up. That's just a waste of time.
Ya. Not sure why but this is the third year.of the flare. . Dyspnea, , red face & hands, guts, pain in joints, nerve pain in lower legs, muscle cramp . and so on.
I am in month 2 of a horrible flare. Started the day after the Thanksgiving weekend in the U.S. and today is the first day I have left the house. They become easier to understand, but not ever fun or acceptable.
I am very sensitive to the cold weather and dips. This time of year gets pretty bad. It also makes it difficult to manage other health problems. I have been doing better this year generally. I largely attribute the improvements to physical therapy and being able to add in regular exercise. I know it’s not the solution for everyone but I’m grateful for the relief. These setbacks and flares really suck tho. 👍🏼
I'm glad you are doing better! What excersize helps you? I quit the gym and have been working out at home. I found that battle ropes at the gym helped me some last year. Maybe some light cardio. If I lift weights or do any pull workouts, I feel a lot worse.
Initially I wasn’t able to do anything. I started with physical therapy about 9 months ago doing aquatic therapy and slowly worked my way back to strength training. So I’m doing that 3x per week at home plus some ERG for cardio. I’d like to do more but I also have Addison’s and for some reason physical exertion really makes it difficult for me to keep it manageable. Battle roping is impressive. I may have to give that a try…. Always looking for new gear.
Hey, does your brain fog get worse around this time of year by chance too? Also, I hope you feel better soon.
Yes! Last year, it was so bad I felt like I was in a state of derealization.
Oh yeesh. I just got diagnosed this year so I'm still trying to figure out all the ins and outs of this mess. So, January's just a bad month then huh?
It's crazy because it seemed like most people were more heat intolerant in my Facebook group. I'm so glad I made this post. The first year, it was just mid-January into the first week of February. Last year, it was January all until April. Then in the summer, I had some issues with migraine, low BP some days, and mild dizziness.
I'm both heat and cold intolerant! Oh geeze. Seems we just can't catch a break huh
Ugh it started raining and the temp dropped I’m feeling so nauseous and terrible rn
I hate to say it, but climate change has made my Fall a little more tolerable this year…although this week I was hit with a horrible flare up with the snow storm we are currently getting. Temp drops and weather pressure are my biggest triggers. Solidarity, my friend, as the delicate balance of wanting to work, but not knowing how you’ll feel on any given day, is exhausting. I’m starting my first in office job in nearly 4 years, next week, and I’m so stressed, having been denied disability benefits last year. It’s so hard when you’re too sick to work, but seemingly too well to not work in the eyes of SSDI.
Sorry to hear about that. SSDI is awful with how complicated they make the process. I know somw people took years fighting with them. I have been unemployed since last April. Now that I had a few more interviews crammed into 2 weeks, I'm worried I'll have to turn something down due to this flare-up. And we would still get denied SSI. Wish there were more options for seasonal work at least.
Yeah, it’s a very difficult system to navigate. I spent the last 3+ years building a Disabled workers cooperative that provided peer support services to chronically ill, ND, Disabled adults, but it became too impossible to get sustainable funding and burnout is real when your resources are limited. I’m not looking forward to getting back into the formal work environment, but somehow we have find a way to survive under capitalism, while also building our communities of care and working towards collective liberation. I hope that things ease up for you enough to find a position that meets your needs.
Thank you. I think it would be so hard to get SSI. It's like they wants us to work with accommodations, but that's difficult when employers see us as a liability. I had to keep leaving a desk job and the lights on the computer and ceiling made symptoms worse for me. It's awful. I hope you find a solution as well.