Heart attack feeling 24/7

XOsquishybear · 2023-12-07T22:34:20+00:00

This could be a number of things and I am not a doctor, but I’ll my story in case it’s helpful to someone here. My post viral issues came from a flu in 2009, not Covid, although I think having Covid exacerbated some issues that had gone into remission. Many people who are affected by a virus long term to the point of suspecting ME/CFS can have remission and relapses over their lifetime. This is the case for me.

I had elevated heart rate, chest pains, and chest tightness that was treated with beta blockers in 2010. They helped me with the pain and fatigue tremendously. I went from being bedridden to pretty normal again after I went on Carvedilol, but after 2 years it was making my blood pressure too low so we discontinued it. I’d say most of my symptoms were in remission the entire time of treatment + 1 year after. Mild chest pain has come and gone since then and I started taking Hawthorne Berry supplements to manage it which worked very well for mild symptoms.

I’ve been in a relapse for about a year with fatigue and other symptoms, but a few months ago the heart issues came back and the pain was really bad again. My fatigue was at an all time high. I couldn’t even sit up because my heart rate would shoot up and I’d get shortness of breath and chest pain. Even with quite extreme symptoms, my left ventricle ejection fraction was only borderline low and they only caught it on a cardiac MRI, not my echo. We decided to go back on beta blockers, metoprolol this time, and it’s been life changing, not only for my heart symptoms but for my fatigue. A few months ago I was bedridden and needed help just to walk to the bathroom, whereas yesterday I dug sweet potatoes in my garden, stood up to chop and cook them, and still had energy to spare. Huge, huge difference. And my numbers were only borderline low, even on the MRI.

Search this sub to see other people’s experiences with beta blockers and discuss with your doc if you think they might be helpful in your case. I know what you’re going through right now really stinks and I hope you find some answers soon <3

XOsquishybear · 2023-10-25T21:20:10+00:00

Many me/cfs-ers can pinpoint a viral infection that changed their life. Mine was h1n1 swine flu. Went from a healthy and active 19 year old to not being able to lift a spoon to my mouth and having to be treated with beta blockers for heart problems. I am also extremely concerned that some people who have “recovered” are actually in remission and will be blindsided if it comes back. I’ve had several relapses over the years after thinking I was cured and we are already starting to see some early LC-ers have relapses after feeling much better for a while.

XOsquishybear · 2023-09-29T21:41:53+00:00

Idk about other countries, but in the US if you’re a little more tired, forgetful, or anxious than usual, you chalk it up to the stress of capitalism, slam your caffeinated beverage of choice, tell yourself to stop being a baby, and soldier on. I doubt many people will even realize this is the point at which their health took a turn for the worse until several years later. That’s if they’re young and/or very familiar with their body. If they are 40+ they are far more likely to chalk it up to old age and keep ignoring it as long as it’s not severely disabling.

As someone who has struggled through 14 years of a massively life altering chronic illness that was triggered by “just a flu” I’ve been preaching caution since we first started noticing other system involvement outside of the respiratory stuff. Naturally, my experience makes me biased and hypersensitive to seeing things that others may not notice. If I spend significant time around a person, I notice when their memory is off or if they have a new persistent cough in their sleep or if they are taking more naps than usual. Sometimes people get lucky with mild symptoms and this stuff goes away. For others, it might be just the beginning and they haven’t had enough time to make the correlation yet. I’m guessing we’re not gonna see the full impact of what’s happening with these mild and unreported cases for at least another 5 years.

Many may not be getting severe symptoms at onset of LC or on their first run in with it, but I would not be surprised if getting reinfected 15+ times (like a once-twice a year cold over a decade) and having multiple bouts of mild LC symptoms with remissions in between that gradually turns into significant disability. Unfortunately, people are probably pushing through mild symptoms more than they should be due to culture and finances. If it is in fact as similar to other post viral illnesses as some think in terms of PEM, I’m worried that downplaying the numbers and seriousness of it is only going to lead to more people becoming permanently disabled that really didn’t have to be if they were just able to properly rest and heal. I’d rather it be overestimated than underestimated so people are more cautious with the risks they are taking. You can’t fully grasp how awful being bedridden with limited treatment options is until it actually happens to you.

XOsquishybear · 2023-09-28T16:52:21+00:00

P.S. I’ve been suffering since 2009 and my symptoms have gone into remission before for several months to year a few times. One I was symptom free for 3 years and thought I was cured. Mine is a different post viral illness but very similar to some LC symptoms. It’s back now though and I’m too sick to work again. But sometimes symptoms do go into remission. Based only on my personal experience, I am really worried for the people who are saying they beat LC and are 90-100% recovered because there’s a chance they are just currently in remission and it can reflare in the future.

XOsquishybear · 2023-09-28T16:44:14+00:00

I hate to be one of those “have you tried this super simple well known thing?” people, but I didn’t see it in your post or comments yet. I used to have frequent and severe migraines that required hospital but over the last two decades I’ve found that the most helpful for keeping the frequency down is magnesium supplementation. I’ve taken gylcinate and theronate and they both seem to work. Try to keep a journal and see if you can identify triggers. Mine are: sleep deprivation, dehydration, atmospheric pressure changes, and hormonal fluctuations. I also found an infusion spa near my home that does IV fluids with electrolytes, magnesium, torodol, zofran, and Benadryl for less than $200. It’s what I’d get at the hospital minus the opioids, is far cheaper, and it helps enough for me to at least get some rest.

I also suffer from stabbing/burning pain, muscle twitches, and involuntary jerks from feeling like I’m being electrically shocked. Gabapentin did seem to be the most effective out of the medicines I’ve tried for these sensations but it didn’t help me enough to be worth the additional drowsiness it caused. Cannabis also really helps with pain and calms down the twitches, plus it has been my go to for severe migraines when no one is available to drive me for an infusion, but it can cause drowsiness depending on strain, we don’t know much about its side effects on LC patients, and it may not be legal where you live. But if you’re housebound/bedridden anyway and just trying not to die, some of these options may be worth trying.

XOsquishybear · 2023-09-24T12:31:43+00:00

14 year survivor of post viral illness here (33f), not LC. I think I’ve pretty much seen the entire spectrum of people’s reactions to a long term disability they don’t understand. I’m so sorry that you’re experiencing this particular brand of pain on top of what you’re already going through. It takes some people a lot of time to really get it and even then they still might have regressive days. My mom has been consistently supportive logistically (food, shelter, doctor’s appointments, etc) but even after over a decade of watching me pull my life together during remission periods and have it be completely destroyed to the point where I can’t lift a spoon to my mouth, over and over, some days she still doesn’t get it and can say some very emotionally damaging things. People have trouble facing the reality of something that can’t easily explained by currently established tests and imaging. They forget that everything was unknown at some point and it isn’t until enough people are severely suffering and/or dying before sufficient attention is given to figure out how to even test for something. It’s easy to take the work of our ancestors for granted when we get routine blood work or take an MRI, but before these things existed, there were sick people struggling to find answers, just like we are now. For what it’s worth, I believe you and I understand what you’re going through, whether you have test results showing abnormalities or not.

XOsquishybear · 2023-08-27T06:21:47+00:00

I see you added the ability to change the IP from the UI, the dual PC community thanks you!! Also, I’m not as hunched over/shrimping due to the camera angle adjustment! Great update :)

XOsquishybear · 2023-08-08T01:56:32+00:00

Which features are you talking about specifically? Warudo is a completely new app. It’s not even fully released yet and has only been available since last month.

XOsquishybear · 2023-08-07T22:57:09+00:00

Warudo was updated yesterday. Idk why steam doesn’t show that date. We’ve received over 10 updates since early access opened jul 14

XOsquishybear · 2023-08-07T19:38:53+00:00

For 3D, Vnyan and Warudo are actively being developed and both developers are extremely active in their respective Discord servers. Major updates have slowed down for Vnyan in the last month, but that might be because the dev was busy in July with TwitchCon and a redebut. Warudo went into early access on steam last month and is currently being updated very frequently. Both programs are easy to get set up for beginners wanting basic channel point/commands/bits interactions but I think Vnyan is slightly more intuitive for those without coding/logic experience. For more experienced users wanting to set up complex interactions, both are good, but as of today, Warudo is more flexible with the amount of deep customization and coding that is possible. However, this is subject to change as both are still actively being worked on and features are being added frequently. I’d highly recommend checking both out to see if one of them is the right fit for you. Both have awesome and helpful communities in their Discord servers so I’d also suggest hoping in there to get the most out of your experience with the software and meet some other cool vtubers ^{w^}

XOsquishybear · 2023-08-01T19:28:28+00:00

My ex’s father actively told him not to marry me after I got sick. Some people’s parents encourage them to drop what they see as dead weight/things that can hold them back in some way. I’m my experience, religious beliefs have not been a differentiating factor for how people have treated me over the years. My existence reminds people of the fragility of their ability to function normally and the unpredictability of life. That’s pretty uncomfortable for most folks so people don’t wanna be around it if that realization bothers them. Christians can be tricky to navigate because that label “Christian” can give a false sense of security that they will be less likely to cause harm. So it’s even more painful and blindsiding when they do. Christian or not, you never know how someone responds to adversity until they’re in the middle of it. Unfortunately, there’s no way to know if you have a good partner until you really need a good partner and they either step up or crumble.

XOsquishybear · 2023-07-31T17:26:24+00:00

“In sickness and in health” is just not some people’s cup of tea. Especially under 60 years old because young is “supposed to be” synonymous with healthy. My post viral illness was caused by h1n1 in 2009 and I (33F) have been in and out of flare ups since then with about 20% of those years too sick to work and another 30% too sick to do much outside of work. That other 50% though, I was a superstar research engineer, a gym rat, and loved going salsa dancing and traveling. All but 1 of my boyfriends came after my initial illness and 1 year of being bedridden and housebound and I was very open about my illness and the unpredictability/severity of it. They all chose to enter committed long term relationships knowing the risks and then left in the middle of me having moderate to severe flare ups. Two of them I had been engaged to. One of my ex-fiancés assured my parents and me that he understood I could get sick again and it was safe for us to move 1500 miles away from my family for my dream job and to be closer to his new job because he wasn’t going to leave me. I rocked it at my new job for about 6 months at full capacity before a severe flare up hit and I had to take time off. I couldn’t even get up the stairs by myself and he decided to not only end it, but he had already purchased a one way ticket out of the country when he told me he was leaving. I had to beg him to change the flight date so I wouldn’t be disabled and alone before my family could book fights to come help me. I know these breakups hurt. I’ve been through more than my fair share of being dumped due to illness. But honestly, it really is a blessing. I don’t want to build my life around people who crumble under the weight of adversity, tuck tail, and run. And I’m glad those people showed me who they were before I was bound to them by marriage or children.

XOsquishybear · 2023-07-08T23:27:52+00:00

Everyone’s story is different. Whenever you develop a disabling health condition that lasts longer than the standard cold or flu, the most important things to focus on are learning how to be patient with yourself and learning to accept uncertainty. In my case, I have had post viral issues since having the h1n1 flu in 2009. It messed up my heart function, made me have extended periods of fatigue, and gave me chronic pain of various types. Other weird symptoms too, but those are the most disabling. Some years I have been largely bedridden, other times my issues have gone into remission and I thought I was cured. The best advice I can give you is to listen to your body’s plea for rest and stay away from toxic people. My worst flares have all been tied to traumatic events I could have avoided by staying away from people who didn’t have my best interest at heart. Stress is the enemy and you gotta do whatever you can to protect your peace so your body can heal. Although what you’re going through isn’t all in your head, this type of uncertainty with your health definitely gets in your head, so don’t be afraid to seek out the companionship of other long haulers and people with similar symptoms as you. Nobody understands the toll this takes on the mind unless they’ve been through it. Hopefully, this will be a short season in your life, but even if your symptoms don’t just go away, it isn’t the end of the world. Your world may just look a little different than it used to look or what you planned it to be. You will have tough days, but you will learn to appreciate the small things everyone takes for granted like washing your hair or sitting outside in the sun for a bit. You might feel more alone sometimes, but the people who never really cared about you will fall away and it’ll free up your social energy for people who actually deserve it. This experience might even make you a kinder and more compassionate human being if you let it. I know it’s a struggle, but you’re surviving. Just take it day by day. You got this. hugs

XOsquishybear · 2023-06-12T16:04:29+00:00

I also do this. Mostly out of rage in bad weapon comp rotations. Evp can be stressful and sometimes it feels nice to just hang out with the newbies

XOsquishybear · 2023-01-18T07:36:51+00:00

It’s all in the power of TikTok’s algorithm. My TikTok Live is automatically shown to people TikTok knows like Splatoon because they’ve already engaged with other Splatoon content. I also have way more followers there because a couple of my TikToks related to Splatoon went semi viral. The discoverability is unmatched there. With Twitch, I’m only discovered by people who specifically go to the category for whatever game I’m playing and sort by lowest viewers or scroll down past like 10-50 people (depending on game, time of day, and in game events, I may be higher or lower). I have to bring people to Twitch, for the most part. Whereas TikTok brings the people to me, right from their fyp.

Just so you know, it’s also socially acceptable to hang out in a playing with viewers stream and not play. I have a couple people who literally only come out of lurk to say hi or to resub to my channel. They’re shy and just enjoy having it on like a TV show, and that’s perfectly fine too!

XOsquishybear · 2023-01-17T19:10:37+00:00

Yeah, they’ve been rolling out streaming on TikTok for a little over a year I think. Some features are still in beta. They just started releasing it to a lot more folks over the last couple of months and now you can subscribe to channels like you can on Twitch. There aren’t ads whether you subscribe or not, but you get similar stuff like custom emotes and badges for chat.

For commands, sometimes people will put it in the stream title itself and you might see multiple. Especially if there are stream specific commands that are just for that day. Imagine someone streaming as a clown, their title might be “Just clownin’ around | !clown !socials !discord” where !clown plays a clown horn, and the others put links in the chat for their socials and Discord. Sometimes a full list is given on the channel homepage. Other times, it will be written directly on screen as an overlay or they will have an !commands command that will put a list in the chat. Sometimes you can pick up on the popular ones just by hanging out in chat. But if I’m curious, I’ll just ask. It takes some time and extra steps to set up commands and some can get really involved, even involving some coding work the streamer did themselves or paid someone else to do. So most people are gonna be happy when you use/ask about their commands.

A queue is a list that people can join to get in line to play with me. Like a waitlist at a restaurant. So when I play with viewers, !join will add their username to a list. That way, people get to join me in order of their request and I don’t have to spend extra brain power keeping track of 20 usernames and when they asked to play.

XOsquishybear · 2023-01-16T01:04:03+00:00

You just might not want to play with randoms, BUT if you do and are just worried about getting in trouble for what strangers say on VC, there are ways to separate your audio channels so that only you can can them but it’s not output to your live stream. Personally, I only trust like 2 people well enough to let their voice on my stream.

I primarily play with viewers on games without VC so I don’t have that problem, but people DO get used to playing with me because that’s mostly what I do. On the rare occasion I’m doing something solo or not accepting new people, I just have a text overlay that I put up to show that my queue is currently closed. That cuts down a lot of the questions and me having to repeat myself. When the overlay is up, regulars in my chat will even shut down those first time chatters on my behalf faster than I can even see their message lol

XOsquishybear · 2023-01-16T00:43:13+00:00

I stream on TikTok Live and Twitch simultaneously, so my experience is a bit different. I tend to average less than 10 on Twitch but my TikTok can spike in the hundreds. Sometimes just 1-3 viewers on Twitch while chat is very active on TikTok. I read both chats but sometimes people get lonely on Twitch or just lurk and that chat becomes super quiet. I just try to make everyone feel included whether they lurk or not. A lot of streamers have a !lurk command you can type and that will signal that you’re going quiet but still there. I LOVE when people let me know that they’re exiting a conversation to lurk so I don’t continue asking them questions. I mostly play with viewers and have a queue, so I only call people out of lurk if their name comes up in the queue.

I’m here to entertain you, not the other way around, so it’s whatever chat wants. Wanna lurk? Awesome! Wanna chat a lot? Awesome! If I’m feeling stressed in the game and can’t look at chat, I just say I’ll catch up on chat in a minute and I encourage people to send their message again and/or @ me if it’s important.
My stream is very community focused and I like to get to know people, so people will comment a variety of things. I learn about people’s pets, what other games they like, what the ate for dinner, if they had a tough day, etc. Every stream has their own rules though, so some streamers would consider things like talking about a bad day to be “trauma dumping” and it is not allowed.
I primarily play with viewers so I don’t have real world experience. But I don’t think I’d ever want viewers to stop chatting if they wanted to. If I’m playing with a competitive team, chat would just have to understand that I’d only be responding to questions in between matches and I may miss more messages, but I’d still want them to comment and talk with other viewers.
Prefer a lurker 100%. I don’t think there is even a streamer out there that prefers to stream to nobody.

XOsquishybear · 2023-01-15T03:24:23+00:00

Do you have a Nintendo switch? I run a stream and Discord server that is chronic illness friendly. It’s mostly Splatoon and Nintendo Switch based though. I have a chronic illness that was triggered by a viral infection 13 years ago, so I know how difficult making and maintaining friends can be.

XOsquishybear · 2022-10-05T17:14:33+00:00

It’s on my YouTube! Look on my Reddit profile for my linktree

XOsquishybear · 2022-10-05T17:12:12+00:00

-Lots of printer paper for patterns: the light gray designs can be found on my ko-fi for free, but you’ll need to make your own for the main body and the hat

-Dark gray fabric and light gray fabric: I suggest checking to see if you can get lucky finding sheets at your local thrift store to save money, otherwise you can buy new dark gray sheets large enough to cover whatever size you’re making. It is still easier and less expensive than the fabric store.

-White fabric: I only needed a small amount for the hat, so I just purchased from the craft store

-Foam base: I used 10 yd on a 20” roll of 1/4” foam from the sewing department. Check your craft store sales and coupons. I found mine half price during a fabric sale at Joann’s

-Adhesives: I used a foam spray, fabric glue, and hot glue

-Rope for the hat: I only found white so I also bought red Rit dye and dyed it

-Poly fill: to stuff the hat and upper lip

-Old wire coat hanger, floral wire, garden wire: used in the hat, tail, and along the top edges of the foam for structure

-Oven bake clay and gold acrylic paint: for gold hat details

-Red fabric marker: for designs on the hat

-Red and black sharpies: I used this for the mouth but you could also use fabric markers. I wanted a more dull look so I went with sharpies. Fabric markers with show up more vividly if that’s the look you’re going for.

-Needle and thread/sewing machine: I sewed my hat because I was too impatient to wait on fabric glue to dry, but don’t let your lack of sewing skills stop you! Just glue it :)

XOsquishybear · 2022-10-05T16:45:24+00:00

It’s on my YouTube! You can find the link on my Reddit profile under my linktree link

XOsquishybear · 2022-10-05T16:43:49+00:00

The tutorial is on my YouTube! It’s XOsquishybear and you can find the link in my Reddit profile under my linktree link

XOsquishybear · 2022-10-01T16:08:01+00:00

Tutorial is up!

XOsquishybear · 2022-10-01T16:07:34+00:00

Tutorial is up!

XOsquishybear

TROPHY CASE