CurseAvoider

Things you would only post from an alt account lol.

The one thing they don't tell you about pulmonary embolism is for a time it makes you anxious about everything. It really pulls your confidence out of you. I don't know why PEs specifically, but almost everyone reports it.

Of course mine happened a year ago, so I'm well past the initial stages. I just feel like I didn't have the opportunity to recover fully as my other problems (the nausea vomiting medical mystery) happened so soon after. Haven't been able to go back to the gym since January, and I could barely go once or twice a month before that.

On top of that my symptoms are coming back stronger. I was brushing my teeth just earlier + mouthwash and that was enough to get me heaving for several minutes. I once again had to gather all my inner strength to stop myself from throwing up. After ~2 months of doing relatively better, it's back to being essentially disabled. I kinda saw it coming, I noticed it over the past few weeks.

My hairdresser appointment is tomorrow. I'm excited because I really need it, I haven't had a cut in 2.5 years as I was growing out my hair and I need it cleaned and cut shorter. I'm thinking chin length.

But on the other hand I'm just imagining myself coming in tomorrow saying hey so, I'm on blood thinners so if you accidentally cut me let me know so I can do my thing (press down on the wound for a few minutes), also we might have to take breaks so I don't puke on your floor, also I need a shampoo because I haven't washed my hair yet this week, also I know you only have 35 minutes with me. lol.

I have to MRIs scheduled this month. They found two spots on my liver during the CT scan but they're not concerned, they think it could be an imaging artefact. The other MRI is for my brain cause they have no idea where to look anymore. My dr said after that we may do a hormonal assessment and after that I don't know, guess I'll get there when I get there.

I also ordered a medical bracelet. They're not really seen often in Europe, but I feel like it'll be beneficial. You never know, I mean, not just if I get into an accident and can't respond, but also if I forget to let someone know about my medication when they should be aware.

I also need to get my teeth cleaned at the hygienist but in my condition forget about it. Can't get anything near my mouth for more than 30 seconds lol. Been fantasizing about it though, that's how much I appreciate the small things in life now.

I started growing my hair out before I got sick, and then wanted to get a cut last year but, yknow, everything happened lol.

Anyway since I'm doing better at the moment I'm ready to go get one but all stylists use an online appointment scheduling thingy and you have to select your cut there.

I assume men's haircut is fine, but just wanted to make sure. Is it enough time? Are they going to complain because my hair is long? It's not super long, upper back length something like that. I want to bring it back to a convenient chin-shoulder length.

I think I'm just gonna take a mens haircut and let them deal with it lol. It should be enough time for a basic cut.

But also happy to hear some tips if you have cool long hair advice to share.

But as always I remain ambivalent lol

I got the test results back and everything looks good except for some strabismus which I've known about since I was a kid, it's not really news to me lol, and the slightly lower reflex response from my right side which they found during the test.

But this means it shouldn't be menieres because it doesn't present like that.

So on the one hand it's good, on the other man i don't know. Each time we thought it was something it turns out it was nothing. Just a complete phantom illness.

The weird thing is I know two people that have the same symptoms I do, also without any causes. They're much older but still, it's weird right? A syndrome of just always feeling nauseous and on the verge of vomiting and they don't find anything that causes it.

I think it's worth continuing the medical tests. But also I'm not expecting them to find anything anymore. Everything is gonna turn up fine which is great, but not really helpful either. I'm also lucky that currently I am doing much better. No idea how long it'll last but I can leave the house now and go to my appointments as long as I take it easy and slow. I probably couldn't be out for more than a few hours though.

I think my two options are accepting this is either caused by stress, or by covid somehow. These are my best answers. Just chalk it up to a best guess.

I'm only worried about two things, that I don't know what this means going forward, and that I don't know if doctors are going to stop believing me eventually if they can't turn up anything. Like what do you do with your life

I went and did the caloric test yesterday. Honestly it wasn't so bad, I can definitely imagine that my experience was milder than others, but the way you hear about the water in the ear thing makes it seem like it's torture. One website even said you should probably get someone to drive you home afterwards lol. It was perfectly fine, the noise when the water first hits your ear is the worst thing about it and it lasts a split second.

Anyway the tech couldn't really tell me much but from what I saw my reactions (it's a whole battery of tests) are too mild to be menieres. I'm seeing the ENT again next week to discuss the results but at least it's probably not that. At most I have some diminished capacity in the right inner ear but just a little bit, I doubt that's cause for concern. Audition is apparently perfectly fine.

I have a CAT appointment in a few hours for an abdomen scan, ordered by my GP. I get the feeling nothing will come out of it either, but we'll see. I forgot what we're looking for this time but it's not gastric issues. Then after that depending we'll be doing an MRI, which I think is a good idea - I don't know why, but I can feel that it's a good idea to get one or talk to a neurologist. But if the MRI comes back negative, then we're out of ideas lol.

I guess if that happens I'll have to say that it's caused by stress or anxiety or panic lol. Thankfully I'm doing a little better these days - still not great, but good enough that I can do chores around the house, and I can walk outside without getting to 99% puking. It might go up to 50% so it's not cured by any means, but it's manageable. At least it allows me to get to the appointments.

I also saw vestibular migraines which could be a contender but tbh the dizziness is a tenuous link that we're testing out because we're out of ideas. The real problem is the constant, a-draft-could-make-me-puke nausea. And I'm not sure people get year-long endless migraines.

As part of trying to isolate a cause for my problems I went to see an ENT yesterday. I last saw him in late 2023 for random vertigo episodes, at which time he found an imbalance but no cause for my vertigo. Since the PE the vertigo has returned, 3-4 times per year or so. It seems obvious to go see an ENT with this description but the symptoms are so general that it was also obvious to go do a gastroscopy and blood tests.

I barely spent 10 minutes with him yesterday lol, but he immediately said that based on everything I said it was likely menieres. He did cancel another appointment to test me on Monday so that was nice.

His theory as to the random nausea is that my inner ear is affected but my body works to compensate, so I don't notice it, but it still causes nausea (through the compensation I think?)

In any case he was quite sure of it, apparently everything I told him fit with menieres. I'm trying not to think too much about it until I get the test done, then I'll probably have a ton of questions about it. And if it's not that, we're back to square one.

I'm super tired these days also, going to take naps in the morning or afternoon, but I also go to bed early and in consequence wake up early lol. But idk. It feels like I'm just eating and sleeping these days lol.

I say not anymore but to be honest I never knew what the problem was in the first place. First we thought it was the blood thinners, now I've tried literally all of them and I still have issues, so of course logically it means the thinners are not the problem. Or are they?

I've had a pretty bad week all of last week, actually since I went to see my dr on Monday last week. Socially though my symptoms are mostly inhibited, which makes it hard for people to see how bad it gets and I think they either don't really get it or outright think it's not as bad as I make it out to be (how can you make "it takes me 20 minutes to put on a t-shirt because I have to fight the urge to puke at every step" clearer). I was doing fine from the moment I got into my dr's office, but upon getting home symptoms came back pretty quickly. From Monday up to Friday evening I basically even had nausea while doing literally nothing (watching youtube videos, which sometimes even that is too much and literally the only thing I can do outside of watching paint dry is read a book).

I invited some friends on friday to celebrate one year of the PE and right up until they rang the door I was actively fighting not to puke, outright thinking "should I get it over it now and hopefully that way it gets better when they're here?". Just as I was thinking about it the door rang, I went to say hi, and 2 minutes later the symptoms disappeared for the entire night. I was actually doing pretty good, because even when I don't have nausea I can kinda feel something is wrong in the abdomen area. But I digress.

Since Friday night though? I've been doing pretty well. I feel like never before. But I also feel like it's gonna come back, because it's been going on for a year now and I don't believe it will just get up and leave like that out of nowhere.

The one thing that has changed in regards to the meds is I got back on Xarelto beginning in May after around 1.5 months without it.

What do you even do in this situation? When I tell people I'm doing better for the past 3 days only (to be clear) they think I'm cured. But I can also feel that physical activity such as walking triggers mild symptoms again. I don't think it's as simple as "oh he's doing better job done all good move on with your life".

I'm grateful that I've had some past few good days. I want to get better. But I also know with 99% certainty I'm not actually better, and doing anything will trigger back the symptoms again and I'll be back to square one. If the weather is good this week and I'm still feeling good I'll try to go take a walk and see how I fare, that's about the best troubleshooting I can do on my end.

What is even the problem at this point. It's not the medication but changing the medication makes things better for a little while. Social situations (depending) inhibit symptoms for a while. I say 'depending' because since a couple months ago going to my therapist does not stop the symptoms, she actually saw once how difficult it was for me to even talk (couldn't get more than 5 words out without getting the urge to puke). It's like, I can puke on the fucking side of the road while walking there, breathe heavy in the waiting room, and then as soon as they call me over I'm suddenly all good. There is a clear link with physical activity (of any kind) though. Sometimes after eating I also feel mild nausea and sometimes I don't. No idea what that means either.

My best guess at this time is something similar to how you can puke if you exercize on an empty stomach. This is your body's way of saying "I don't have the nutrients currently for what you're asking me to do so take it easy". In social situations, my body may decide that it needs to prioritize this over trying to send me a message or expel whatever it wants to expel that it can't. I have no idea but it seems to make sense to me.

idk if anyone remembers me as my last post was 2 months ago but it's in my profile history if you need context.

Long story short, I've now tried literally every blood thinner that exists. None of them solved the problem - actually, Xarelto, which is the one I started on, is also the one I tolerate best.

This likely means that my problems are not a side effect of the medication but caused by something else. And we don't know what, so that's cool.

I have more tests scheduled (in the 2 months since my last post I basically tried the last 2 blood thinners, that's how long it takes lol) to look at other causes but my dr is pretty much at a loss and so am I. We're just taking stabs in the dark trying to find something on tests.

The funny thing is I was talking to my neighbor today and they told me the husband's sister-in-law has the same problem as me apparently, except no clot event prior to that. But she also can't leave the house because it causes her to have nausea and vomit.

But it's such a general symptom, where do you even begin with it? Looking things up online I saw a medical case of someone around my age who had a lesion in the cervicals (iirc) and developed a similar problem from it, vomiting up to 25 times a day. It's the most generic symptom which makes it hard to pinpoint a cause.

So we're kinda back to square one, but at least now I can get certificates if I need them because it's not caused by the medication anymore so they can't argue lol.

I invited some friends over on Friday to celebrate one year of the embolism, which is technically on May 13. I probably won't be able to stay too long, but I think it's important to still have some social contact in these situations. And it's funny.