u/Another_throwaway446

Weird question, but basically, I was on ketotifin oral compounded, started very low did it all right, but it ended up doing nothing for my overall symptoms and made me dangerously depressed. HOWEVER. The ONE thing it did was significantly reduce my extremely painful conjunctivitis/ocular rosacea. My eye doctor told me that red eyes were just a lubrication issue but eye drops all make it worse and the fact that it so significantly decreased with the new antihistamine makes me wonder if it’s MCAS/allergy related. Had anyone who couldn’t handle oral Ketotifen tried the eye drops and found any benefit?

I’ve been on 1mg for a few weeks now and I feel nothing. Absolutely no better or worse. It had a nice drowsy effect for about 2 nights which was helpful but now that’s gone too. My environmental allergies are honestly kind of worse. My food reactions are the same. My migraines are the same. I’m mostly feeling nothing at all.

Honestly I kind of hate being on medications like this and I’m not sure if I should stick it out or quit now before I’ve made my body dependent on it. Antihistamine withdrawal can be nasty and if it’s having no positive impact I’d hate to come off of it later on after taking it longer and have to suffer worse for no reason. I’m already dependent on Zyrtec and basically can’t stop taking it now. The doctor who prescribed this is very hands off and has no guidance. I was hoping this could drastically hanger my life like some people but it seems like nothing. I have ME/CFS too for reference.

I remember being a kid, nearing adolescence, and seeing how several of my peers struggled immensely with self hatred. The way they talked about themselves, the way they treated themselves. I saw self hatred all around me, but yet I did not understand it. I felt very lucky, like I knew at the time that I was lucky, to not experience it at all. I saw that those kids all came from rough homes and suffered abuse and hardship, which I did not. I was a very self aware kid. I also saw all that older kids/teens seemed to experience it, and I felt that I had a wisdom that childhood had given me that I did not want to lose. In the intro to one of my journals, I wrote a list of things to remember as I entered adolescence. One of the list items was “don’t start hating yourself.”

She was wiser than me. Because I really fucking hate myself. I don’t even know how it happened. It was definitely sometime in high school. I think I remember the moment I realized I’d failed her.

I don’t really understand why I hate myself. I mean I can think of a few possibilities. I was a bratty kid who was horrible to my parents and my sister sometimes. I’ve failed at school repeatedly. I have certain types of sexuality OCD that make me feel gross sometimes even though I am aware that it is OCD and it only rears its head very rarely. I know myself to have bad qualities like being mildly emotionally manipulative sometimes. And I get extremely mad at myself when I do it without catching myself. I struggle with personal hygiene. I shop on amazon. I waste money irresponsibly. But all of these things are things that I can rationalize. I know I was just a kid doing my best. I know I have disabilities that made school hard. I know that intrusive thoughts do not a bad person make. I know that my awareness and effort to work against micro manipulation probably puts me above a lot of people in that regard. Disability sort of excuses the last ones too.

But yet I still hate myself. I don’t even know if it’s because of all those things or completely unrelated. I just hate myself. It’s so ubiquitous to the way I live it’s like this undercurrent that narrates every bit of my life. I so regularly verbally abuse myself under my breath or in writing. I feel this sense of disgust at the thought of trying to love myself. Like physical vile recoiling disgust. Like as if I’ve been asked to drink toilet water or something. It’s no way to live.

How do you cope with being homebound when you are the opposite of a homebody. I used to spend every moment possible out of the house. It’s been a year now and it just gets worse and worse. I see so many people call their bedroom their safe or happy place but it is nothing but a prison to me and I resent it and I resent the prison of these walls of this house of this body and this skin. I am naturally the opposite of a homebody, nothing about living this way is healthy for me. It’s honestly not safe. It’s not okay.

I spend all day, every day, looking at reels and chatting with people in reddit DMs. A year inside is just too much, it’s gotten entirely out of hand. I don’t care about anything. I don’t care to ever work in projects or work on my health. I’m even failing to see my irl friends who I could 100% be able to see if I wasn’t wasting my brain energy like this. But I just can’t stop. There is no “healthy addiction” I can replace it with. I miss people so gd much. I just stare at my phone all day talking to random lonely men mostly. I check my notifications every few minutes and can’t stand it when there isn’t a new one. My screen time is 15 hours a day. I’ve lost the ability to do everything else. When I was much sicker, and couldn’t tolerate screens, I had hobbies, and consumed healthy media like comics and magazines. Now I stay up until 8am, wake up at 5pm, chat, scroll, chat, scroll, till it’s the next day. Like purgatory. I’m so desperately lonely but it’s just making me miserable. There are people who are so much more severe than me who have less abilities who manage to be healthy about this. So no my illness is not an excuse but it makes it fucking impossible to get out of. My mental health got like this during Covid lockdown and literally the ONLY thing that helped was leaving the house more. The only way for me to ever get u plugged is to leave th house but I can’t. I’m literally having my life for the be extracted by big tech. They’re probably happy I’m disabled because I give them so much of my time now. I can’t take SSRIs and those have never worked for me anyways. I just don’t see how I’ll ever escape so long as I am housbound. I fuckin that’s being at home, I always have, my entire life every day all I wanted was to go out. I used to ask to go on errands with my mom as a teenager just to get out. I used to go to work on my off days just to leave. I can’t exist here without destroying my brain. Feels like it’s reached a point so bad I’ll never crawl out. I tired to spend 30 minutes not on my phone last week and I ended up cleaning my room for that 30 minutes and it put me in bed for 3 days. The week before I tried reading instead of scrolling for 30 minutes and that also put me in a crash. SOMETHING HAS TO GIVE

Well I’m not sure if this is exactly face blindness, but it is a facial recognition thing. I am comically bad at judging someone’s age based on how they look like. Like the amount of times I’ve been upwards of 15 years wrong and offended people. I mean I know of a degree everyone is but I just really don’t know how to even begin to know. Recently I was talking to a guy online who is 5 years older than me which is fine for my age but like definitely the upper limit. We exchanged pics and I realized I have no way of verifying if he looks like who he says he is. Like I honestly thought he looked a bit older than he says he is, not bad at all but I don’t know if that’s true or not or how to judge. I’m weirdly paranoid about this, he seems like a very normal guy and I didn’t even set an age limit so I don’t know why he’d lie, but I just hate that I can’t use my own judgment, it makes me feel so vulnerable to being taken advantage of :/

I WANT TO CLARIFY UPFRONT: this is not a problem for me once I’m in love with a person. Once love is there, the attraction stays to that person regardless of gender. I’ve been in love twice, one time for multiple years, and my attraction did not change. So this is not a situation where the answer is “be polyamorous.”

The problem is during the “getting to know you” phase. When I’m single, my bi-cycle is extremely unstable. It will swing all the way one direction and then the other. So I’ll get really interested in men, chat up guys for a few guys, but then wake up one morning and my attraction to any of them has just vanished. And all I can think about is women. And then other times I’ll have an opportunity to flirt with a woman, sometimes even someone I was crushing on, but it happens during a time where my attraction to women is zero, and so I miss my chance. It makes it really hard to navigate how I actually feel about someone, because like, am I actually not vibing with them, or is it just because I’ve swung the other way again?

Unfortunately the only way I’ve found around this is the few times I happened to fall in love with the person before we even start dating. Like just falling in love with a friend and getting lucky. But that can be pretty painful and messy and I’d really like to be able to just date normally.

Do you know how many people who have actual disabilities, and so are thus in the disability space, who I’ve talked to who STILLL do not realize the CFS and chronic fatigue are different things?

Like I just talked to someone who’s had MS for 15 years told them I have “ME/CFS” and they respond “oh yeah I have MS-flavored CFS.” I ask them about PEM and they say they’ve never heard of it and had to look it up and they don’t experience it. Okay. So not CFS.

I can’t say ME cause it reads like “me” and I can’t say myalgic encepha whatever cause no one fucking knows who that means.

Tired complaint I know but I’m annoyed 😑

It doesn’t matter if I do nothing extra. I did NOTHING. Same food, same entertainment, same level of activity and sleep. I just felt good. No headache. Higher HRV and less reactive heart rate. Depression lifted. I DID NOT EXERT MYSELF AT ALL but I’m still paying for it. Now I’m in a crash. I didn’t do anything at all that would normally trigger a crash. It is seemingly just punishment for not feeling miserable for a few days. Again, I did *nothing* different. I watched the same videos and ate the same food etc etc. I was literally just not feeling like I wanted to die while doing my usual routine and now I’m being punished for it. I hate that improvement is never real and always just a dark omen of future suffering.

(The context of this post is that I have a severe disability which now keeps me inside in low stim activities every day.)

I just don’t in how to be interested in someone who I have no context for. I’ve tried making friends online but it’s just awkward. Sometimes people reach out asking if I want to be friends and say yes and try to talk but I don’t come across very well online I guess cause they never respond. I hate texting I hate trying to somehow have an interesting conversation online it feels so fake. But I’m lonely. It’s just that strangers online don’t really fulfill my loneliness.

I keep thinking about people I used to know. I keep thinking about this guy I worked with 4 years ago. In slow shifts, we’d get talking. He admitted something about his mental health and his feelings about the world that I felt too. I’d never heard anyone express it exactly the way I felt it. I remember the look in his eyes when he realized I was the same. To me it was really profound. Maybe he wouldn’t even remember. A few weeks later he stopped coming to work. No one seemed to know what happened. I fear sometimes that he ended his life but I’ve never known one way or the other. I think about him all the time and I wish I could find him. I know I never will.

I think about old coworkers, old friends. People who used to be in my life because we were both in the same place at the same time. Those were the connections that always meant the most to me. I don’t know if those people knew how much their presence meant to me. I can’t function without it. I can’t find community unless people are forced to be around me I guess. Or I’m forced to be around them. They all liked me, I know they did. But those kind of connections aren’t the ones that stay after you leave. Especially when you’re too disabled to even see your other friends.

I loved those people so much. I loved the people in my life so much. I cannot sustain or create those connections anymore.

I somehow ended up backing myself up with treatments to try and I’m feeling kind of frozen in indecision about which to go with. I am housebound, mod-severe for the last year. Suspected MCAS and pots, PEM, concussion like symptoms. Currently I take ultra low dose naltrexone (.5mg), coq10, Zyrtec x1 daily, magnesium, and just recently iron because my ferritin is low. Here’s all the potential new things I have in my possession/ready to go:

Upping the ldn dose
Oxaloacitate
Thiamine (vit b1)
Folinic acid (I have MTHFR gene)
Guanfacine
Ketotifen (my allergies have gotten worse with summer pollen)
Leaving for a different city for a week to stay in house that is confirmed to be mold free to see if there is mold in my house making me sick

It’s not a good idea to do any of them at the same time and I’m just not sure how to go about prioritizing. I have adhd which makes it worse 😭 I was excited to try Ketotifen but I heard some stories that made me nervous. I know I’m supposed to up my LDN dose cause it’s sooo low but I always feel a little weird when I up it so I’ve been putting that off too cause things keep happening. All of these things could have the potential to really help me but I just feel stuck :(

Basically I got Covid pretty bad but then recovered but then 2 months later I got a concussion which was also pretty bad but I was slowly recovering but then 2 months after THAT when I was about 50% recovered from the concussion I woke up one morning unable to speak and then by the evening couldn’t walk or eat by next morning couldn’t roll over or open my eyes now I’ve had severe me/cfs ever since. Sorry I’m always on this forum. Anyways I’ve been reading about anti virals for long covid but the problem is idk if I have long covid or not. Can long covid hit you 4 months later? Cause *something* happened that made me wake up unable to speak and then devolve over 12 hours into very severe ME but I just have no idea what. Like was it covid virus reactivating or something or was it all purely physical I just wish I had some way of knowing but doctors don’t care for finding “root causes.”

Basically that. Warm rice bag at the base of my neck is the only thing that helps the awful achy nerve pain at the base of my skull that I get during PEM or when I have a migraine. But I know that MECFS and MCAS causes brain inflammation and I read that heat will make brain inflammation worse so now I’m not sure if it’s safe for me to keep doing that. I’ve tried ice,which is what everyone recommends. Ice makes my symptoms worse and feels awful. :(

I’m mostly just wondering if anyone who knows more about the theory surrounding mecfs has any ideas about what this might be. It’ll be later in the day after I over exerted myself, but before PEM had hit. It feels kind of like thirst, but water doesn’t help. So then I think maybe salt, but salt doesn’t help. So maybe food, and I’ll eat some food, when that doesn’t help, maybe a different kind of food. But nothing helps.

One time, after over exertion, I broke my diet and ate fries and a shake and a burger, and the feeling ever came, and I didn’t crash. So part of me wonders if it’s just the need for carbs because my fucked up mitochondria are wasting so much energy or something? But I’m not really well versed I. How that all works. If anyone has any ideas pls share!

I don’t think I’ve ever truly rested in my life. Don’t get me wrong, I’m great at being alone with my thoughts, I can walk or ride the bus or sit by the ocean with nothing but myself. But I cannot close my eyes and lay still and be in my head. I never have. When I was a kid my parents had to sing me to sleep or I’d have a breakdown cause I hated being in my bed having to be still with my eyes closed. Then I learned to self medicate with media. Phone till I can’t keep my eyes open has been my sleep routine for 12 years, sleep depriving myself so that I’ll knock out the moment my eyes shut. If I am forced to observe the inside of my skull with zero sensory input, it is not restful. It is racing, churning, zooming. I actually really don’t know if a calm restful stillness is possible for me. I was forced my my illness to be still and in the dark for months when I was severe, but it was sickly, feverish, stuffy, anxious. It was not restful.

I have tried. So much. But any time I try to observe my body, just be present in my body and mind, I find these inherent anxieties that just seem like rocks at the base of my personhood that simply do not budge. The oldest one is climate change which I have had since about age 10. The rest have changed over time, but for the last 14 months, it has been: my dad’s declining mental state, my dire financial future, the disturbing actions of my government and the infection of ai slop into everything, the unending dirt and clutter that one accumulates just by being alive, and most obstructively, the fear that there is hidden toxic mold making me and my family sick.

This is what exists where rest is supposed to. It is like a thick sticky pool of tar at the base of my consciousness that I have row over, or an else be consumed. And I’ve tried plunging into it. I’ve tried many times. But I’ve discovered there is no bottom. It’s not an “the only way out is through” thing. I just end up covered in gross tar and feeling worse. So I stay on the boat. And the boat has to keep moving to stay afloat and it’s unstable and I feel seasick and I’m aware of the tar beneath me but at least I’m not covered in it.

Meditation doesn’t feel restful. It just feels like trying to build a raft over the tar. Somatic tracking just feels like sitting in the tar and going “look look look tar tar tar I’m in it see no don’t panic I’m in it and that’s fineeee here I am and it’s fine fine it’s fine it’s fineee here I am, drowning in the tar, I’m acknowledging it so it can’t hurt meeghhuhkjsbd”(*drowns again*).

How tf am I supposed to get the fucking tar out of my brain so that I can get out of my rocking paddling boat and be still for once in my life and maybe actually heal? 😩 Especially with the mold thing, and with MCAS and other environmental allergies. It’s like ocd. Once you get the idea in your head that your environment is poisoning you it’s really hard to ever feel truly zen.

I’m not split attraction, I feel sexual and romantic attraction the same ratio no matter what, I do the same sex activities, have the same number of crushes, find the same number of people hot, and watch the same amount of porn women vs men. But yet, with men, it’s like you dialed up the sensitivity dial. It’s the same feelings but stronger. All the same but the feelings men give me are louder.

But the thing is, sometimes I don’t really have the energy for the louder feelings. Sometimes they are so strong they overstimulate me. So my comfort zone is with women, that’s what I mainly seek out. But it just seems wrong to do when I’m feeling less with them. My orgasms feel just a little more flat, the butterflies in my stomach are a little softer instead of stabbing. But they still happen and I still enjoy it.

Sometimes I just wish I could open up the panel in the back of my brain and turn the attraction to women dial up to match the attraction to men. I actually wish for it so deeply, all the time. Because the way that it’s all the same feelings but just slightly dulled truly makes it feel like, there is something there, but I’m just being blocked by static interference, or like foggy glasses, muffled ears. Like if I just scrubbed those glasses and took of those things earmuffs and reconnected my brain, suddenly I could feel for women the way I so desperately wish to.

Idk if anyone will really know the answer to this, but I’m having trouble parsing info.

I buy full fat coconut milk, the type that is half or more coconut cream. I probably consume ~1/3 - 1/2 cup a day in oatmeal, smoothies, etc. would this make MCT oil supplementation redundant? I’d been reading all the benefits for my particular condition, which is neuroinflammatory, but then realized maybe I’m already maxing out whatever those benefits might be with the coconut fats already in my diet.

Honesty, unless they are talking about copious sugar, deep fried food, or charred meat, I don’t want to fucking hear it.

I just cannot tolerate the demonization of foods. I avoid the foods that give me hives. I avoid the foods that give me reflux. But I have to fucking eat. It makes me start panicking every time someone does this. People forget that some of us have fucking starved before. People forget that sick people need fucking calories and it’s scary trying to be well enough to consume enough calories. When someone tells me how one of my safe foods is actually killing me it makes me literally have a panic attack. I think I’d be dead without coconut milk don’t fucking tell me I can’t eat it. Oooh don’t eat sunbutter it’s bad for your brain. Get out and of my fucking face I didn’t fucking ask you. My brain feels better when I eat it so I eat it. Because that way I’m not fucking dead cause I’m fucking eating. I eat a well balanced diet all the foods I eat are nutritious it’s a rainbow of colors simple foods and it’s stuff I can access and make to keep me alive. So you should say good job and move on. Like wow you’re sick AND you’re managing to feed yourself? Amazing job no notes.

Okay so dementia runs in my family and when I got genetic testing not put me in basically the highest risk category for Alzheimer’s so that sucks. I’ve had my eyes on ketotifen as the thing that might pull me out of my severe illness, but now I learn it is classes as the type of antihistamine with dementia risk 😭 I already have been taking Zyrtec for a year which makes me nervous but I think from my understanding is less of a risk. Has anyone had to make a similar decision? How did you weigh it? I’ve never had anaphylaxis, I’m able to eat without dying, but I have severe neurological symptoms and various skin reactions