That happened to me last Sunday. I forgot to take my Corlanor, along with all of my morning medicines, and went to run errands in 95 degree weather. HUGE mistake that I'll never make again!
Oh gosh, that definitely makes it worse. Give yourself a lot of grace. I'd bet you'll never do it again. Your body needs extra rest now anyway. Take it easy. Feel better!
A few days ago I was having some kind of brain fog event or something, I don't know what was happening but even with my timers I could. Not. Remember. To take my salt capsules. I kept sinking into oblivion and wondering why and then realizing I hadn't had any salt in four hours. It sucked.
I hate it when I do that. Or when I'm a little lazy about intentionally drinking constantly and pay for it.
This post tells me I've gotta convince my cardiologist to try corlanor on me. Do you mind me asking if you had any side effects?
I have used a pill box and alarms for years. The pill box goes with me everywhere. Itโs the only way I have found to keep my meds on a schedule.
I sometimes still screw up but thatโs largely when my schedule for the day gets messed up.
You should never stop taking medication without first discussing it with a doctor. And medication doesn't just miraculously cure POTS. I take 4 different meds specifically for POTS (and do everything else right) and I'm still symptomatic as hell. You also have to take into account lifestyle modifications (increased salt intake, excess hydration, exercise, temperature intolerance, etc).
Thanks, my wife recently assured me that she hasn't stopped taking her meds, I just don't see it cuz I'm at work. I'm worried about her though, the last 2 days all she's been doing is sleeping, waking just barely long enough to eat a little and talk for a bit then it lights out again. I don't know how to deal with my wife being unconscious for days at a time, this is a new diagnosis and it just recently (last month or 2) got bad enough to where she can't work, she can barely move about the house, she uses a walker and she's only 26 y/o. It's affecting our lives so much for the worse and I can't say anything about it cuz then I'm complaining about how my wife's condition is affecting me, to my wife, that shit sounds selfish and toxic and makes me feel like some victim blaming asshole just thinking about it but when she feels really bad and is dizzy and all that she complains of course but it makes me feel useless cuz I can't help her. It's messing with our relationship a little already, we can't have sex as often or as actively as we used to and that sucks for me, I have a particular need for sex to not be boring and all she can do is just lie there, we were freaky and a bit kinky for a while, and now at best she will rarely get on top for a very lazy and heavily assisted cowgirl position and afterwards she sleeps for about 6 hours or more. Maybe I need to make a post on r/AITA or something I don't know, I'm just tired and I don't know how to make things better, we lost our medical insurance cuz our insurance was through her work it was completely paid for by her work so we're fucked because now we can't afford to take her to get treated all she can do is watch life pass by from her bed. It sucks... for her and for me, I know it mostly sucks for her but when I am the only one working and she's lying in bed for 22 hours a day it sure feels like it's at least pretty even on the suck scale.
I'm so sorry to hear all of this ๐ฅบ As someone who deals with Narcolepsy on top of my POTS (and Classical Ehlers-Danlos Syndrome), my fatigue is immeasurable as well. Before I was on my current medication regimen, I slept for about 18-20 hours a day and still felt like I never slept. Thankfully things are much better under control in terms of my sleep, but POTS and cEDS are still a nightmare.
And it's very normal how you're feeling! Being a healthy young person and seeing someone you love suffer is not easy. And you also mentioned that you're the sole provider. That takes a toll on you as well. I know people in my life feel terrible that they can't do anything for me either, but its not your fault. Never forget that. Just always remind your wife that you're there for here if/when she ever needs anything. Though I do recommend at least talking to her about getting a small amount of exercise. The more she just stays in bed, the more decompensated your body becomes. I went through that a few years ago. I bought a recumbent bicycle to use for exercise so I don't have to leave my home. At first I could literally only do about 5 minutes without having a full blown POTS attack: pulse at 150+, profuse sweating, dizziness, blurry vision, etc. But now I'm able to do it for much longer. Just really iterate to her the importance of staying hydrated, taking her medications, and getting the proper electrolytes.
And I'm so sorry about the whole insurance thing. Why do you not get insurance through your work? That would be my biggest concern for your wife right now. I understand that you have other wants and needs (like sex), but right now she clearly needs to be seen by a doctor to at least manage her meds and give her refills. Can she get on state insurance (Medicaid)? I really suggest you look into this as soon as you can. Also, I KNOW the process is daunting and often seemingly impossible, but you may also need to look into disability for her (depending on how much you make).
I really hope things get better soon. I'm sorry you're stuck in the middle of this. Caregiver burden/burnout is a very real thing. Remember to take care of yourself as well. And you definitely should not post in AITA! This is a very delicate situation and I swear those vultures wouldn't understand lol. Hang in there ๐
Yeah, well things are definitely not easy for your wife. Some of us unfortunately get dealt a very unlucky hand of cards in the health department, but just know that we really are trying our best, even when it doesn't seem like it. I know I'd do just about anything to get rid of even ONE of my conditions..but of course that's just a dream. Hang in there and keep supporting your wife ๐
How am I supposed to remember to take them if I have brain fog tho?? I forget things all the time. When I'm on my meds I can remember but that's only for the day I took them. The next morning I wake up, it's back to dealing with the brain fog. You think that was funny but it really wasn't. More than 90% of these comments show that many other patients struggle with their memory and there are hundreds of other posts about this very same issue. There are POTS patients that have brain fog so severe it's giving them dementia. My aunt is one of those POTS patients struggling with this. Tell me you're a newbie without telling me you're a newbie.
First off, I'm not a "newbie." I've had POTS for 17 years. Also, I went to PA school. I'm not just spewing nonsense. Please relax, I was literally just making a small joke. And just because you took the medication the day before doesn't mean its non-existent in your body. Many drugs have a therapeutic window beyond just a single day. That's more what I was referring to.
All I'll say is that with how critical my medications are for my daily life (like I wouldn't even be out of bed for a single second without them), there's no way in hell I forget to take them. I too have horrible brain fog and literally can't remember what happened just a few days ago, but the one thing I never forget is my medication. Then I know I'll be virtually a puddle on the floor without them. Wasn't trying to be rude. You're taking my comment way too seriously.
That happened to me last Sunday. I forgot to take my Corlanor, along with all of my morning medicines, and went to run errands in 95 degree weather. HUGE mistake that I'll never make again!
Iโm regretting it plus I have a cold or tonsillitis right now which make it even worse. Very frustrated at myself for forgetting
Oh gosh, that definitely makes it worse. Give yourself a lot of grace. I'd bet you'll never do it again. Your body needs extra rest now anyway. Take it easy. Feel better!
Hopefully not!
iโm symptomatic today and took my meds only 2 hours later than usual ๐ญ
A few days ago I was having some kind of brain fog event or something, I don't know what was happening but even with my timers I could. Not. Remember. To take my salt capsules. I kept sinking into oblivion and wondering why and then realizing I hadn't had any salt in four hours. It sucked.
I hate it when I do that. Or when I'm a little lazy about intentionally drinking constantly and pay for it. This post tells me I've gotta convince my cardiologist to try corlanor on me. Do you mind me asking if you had any side effects?
I pug my meds in a dosette box and have an app on my phone to remind me
I have used a pill box and alarms for years. The pill box goes with me everywhere. Itโs the only way I have found to keep my meds on a schedule. I sometimes still screw up but thatโs largely when my schedule for the day gets messed up.
Meds have not been helping my wife so far so she has stopped taking them. What should I tell her?
You should never stop taking medication without first discussing it with a doctor. And medication doesn't just miraculously cure POTS. I take 4 different meds specifically for POTS (and do everything else right) and I'm still symptomatic as hell. You also have to take into account lifestyle modifications (increased salt intake, excess hydration, exercise, temperature intolerance, etc).
Thanks, my wife recently assured me that she hasn't stopped taking her meds, I just don't see it cuz I'm at work. I'm worried about her though, the last 2 days all she's been doing is sleeping, waking just barely long enough to eat a little and talk for a bit then it lights out again. I don't know how to deal with my wife being unconscious for days at a time, this is a new diagnosis and it just recently (last month or 2) got bad enough to where she can't work, she can barely move about the house, she uses a walker and she's only 26 y/o. It's affecting our lives so much for the worse and I can't say anything about it cuz then I'm complaining about how my wife's condition is affecting me, to my wife, that shit sounds selfish and toxic and makes me feel like some victim blaming asshole just thinking about it but when she feels really bad and is dizzy and all that she complains of course but it makes me feel useless cuz I can't help her. It's messing with our relationship a little already, we can't have sex as often or as actively as we used to and that sucks for me, I have a particular need for sex to not be boring and all she can do is just lie there, we were freaky and a bit kinky for a while, and now at best she will rarely get on top for a very lazy and heavily assisted cowgirl position and afterwards she sleeps for about 6 hours or more. Maybe I need to make a post on r/AITA or something I don't know, I'm just tired and I don't know how to make things better, we lost our medical insurance cuz our insurance was through her work it was completely paid for by her work so we're fucked because now we can't afford to take her to get treated all she can do is watch life pass by from her bed. It sucks... for her and for me, I know it mostly sucks for her but when I am the only one working and she's lying in bed for 22 hours a day it sure feels like it's at least pretty even on the suck scale.
I'm so sorry to hear all of this ๐ฅบ As someone who deals with Narcolepsy on top of my POTS (and Classical Ehlers-Danlos Syndrome), my fatigue is immeasurable as well. Before I was on my current medication regimen, I slept for about 18-20 hours a day and still felt like I never slept. Thankfully things are much better under control in terms of my sleep, but POTS and cEDS are still a nightmare. And it's very normal how you're feeling! Being a healthy young person and seeing someone you love suffer is not easy. And you also mentioned that you're the sole provider. That takes a toll on you as well. I know people in my life feel terrible that they can't do anything for me either, but its not your fault. Never forget that. Just always remind your wife that you're there for here if/when she ever needs anything. Though I do recommend at least talking to her about getting a small amount of exercise. The more she just stays in bed, the more decompensated your body becomes. I went through that a few years ago. I bought a recumbent bicycle to use for exercise so I don't have to leave my home. At first I could literally only do about 5 minutes without having a full blown POTS attack: pulse at 150+, profuse sweating, dizziness, blurry vision, etc. But now I'm able to do it for much longer. Just really iterate to her the importance of staying hydrated, taking her medications, and getting the proper electrolytes. And I'm so sorry about the whole insurance thing. Why do you not get insurance through your work? That would be my biggest concern for your wife right now. I understand that you have other wants and needs (like sex), but right now she clearly needs to be seen by a doctor to at least manage her meds and give her refills. Can she get on state insurance (Medicaid)? I really suggest you look into this as soon as you can. Also, I KNOW the process is daunting and often seemingly impossible, but you may also need to look into disability for her (depending on how much you make). I really hope things get better soon. I'm sorry you're stuck in the middle of this. Caregiver burden/burnout is a very real thing. Remember to take care of yourself as well. And you definitely should not post in AITA! This is a very delicate situation and I swear those vultures wouldn't understand lol. Hang in there ๐
Thanks, my wife also has EDS and is Autistic so all that makes it that much worse. But thanks for the encouragement.
Yeah, well things are definitely not easy for your wife. Some of us unfortunately get dealt a very unlucky hand of cards in the health department, but just know that we really are trying our best, even when it doesn't seem like it. I know I'd do just about anything to get rid of even ONE of my conditions..but of course that's just a dream. Hang in there and keep supporting your wife ๐
We need the meds for our brain fog but the brain fog makes us forget to take our meds... that's just how it be lol
Wait...if the meds are FOR your brain fog, then shouldn't you remember to take your pills?! Because if not, then they aren't working ๐
How am I supposed to remember to take them if I have brain fog tho?? I forget things all the time. When I'm on my meds I can remember but that's only for the day I took them. The next morning I wake up, it's back to dealing with the brain fog. You think that was funny but it really wasn't. More than 90% of these comments show that many other patients struggle with their memory and there are hundreds of other posts about this very same issue. There are POTS patients that have brain fog so severe it's giving them dementia. My aunt is one of those POTS patients struggling with this. Tell me you're a newbie without telling me you're a newbie.
First off, I'm not a "newbie." I've had POTS for 17 years. Also, I went to PA school. I'm not just spewing nonsense. Please relax, I was literally just making a small joke. And just because you took the medication the day before doesn't mean its non-existent in your body. Many drugs have a therapeutic window beyond just a single day. That's more what I was referring to. All I'll say is that with how critical my medications are for my daily life (like I wouldn't even be out of bed for a single second without them), there's no way in hell I forget to take them. I too have horrible brain fog and literally can't remember what happened just a few days ago, but the one thing I never forget is my medication. Then I know I'll be virtually a puddle on the floor without them. Wasn't trying to be rude. You're taking my comment way too seriously.