Table 3 Descriptive quotes from 15 confirmed SIH patients describing the most bothersome aspects of living with SIH.

Sc01

“I mean, yeah. The biggest problem is the pain. It might be just everything else is from the pain. When you’re in a lot of pain, you don’t wanna be in a bright light situation. You wanna be in the dark where it’s like you can just kinda focus inward and let it pass.”

Sc02

“Used to go to church a lot, but of course, COVID stopped that, but then again, if it did start up, I have a hard time with that – being able to go somewhere and sit for a while. Every now and then, it flares up, and it’s like, “Oh, I can’t do this.” So, I guess that comes with the good days and the bad days.”

Sc03

“Well, it’s more of an aggravation to me, I guess, because I want to do certain things, and I know I can’t do it without getting a painful headache.”

Sc04

“Yes, it’s just hard to not –to feel like I can’t do those things because I don’t want to have to deal with that pounding, intense headache”

“I mean, I would say I have that sensation at least at some point every day. I’ve got three kids, so I’ve got a lot of bending and picking up and cleaning, and I have an infant, so physically exerting myself is like I just don’t have a choice. So, I would say every day there is something that I do within the day that tells me that’s too much, you know, because I get that sensation. I wouldn’t say it is as often or lasts as long as it did previously. Like when I was pregnant, it would put me down for a couple of hours, and I could only get up in like 20, 30-minute increments and have to go lay back down. So, it’s not as intense or frequent as it was, but I also know how to mitigate it better now, I guess.”

Sc05

“Particularly through the peak of it, I just couldn’t work a full work day, and would need to come home and take a nap in the middle of the day. There’s the asterisk that I was having stomach problems, too, as to exactly what was the origin of the fatigue, or was it both, I don’t know. It’s hard to say. But having to literally change how I lived my life, cut my work hours back, was a pretty major impact on my life. And so kind of a tie between that and the headaches.”

Sc06

“The dizziness. Bar none”

Sc07

“Not being me. Just not being able to pick up and run out to the store, not being able to go on a field trip with my son because I’m afraid I’m gonna have the pain, just not able to do things for others.”

Sc08

“Not being able to do things because of the pain. It’s pretty annoying.”

Sc09

“The intensity. For the most part, today I have a 1 out of 10 headache. Not bad at all. And a 1 out of 10 dizziness, vertigo kind of thing. But not bad at all. And I just go through the day and it’s perfectly fine and I don’t have any problem. The only problem is when it gets worse…But those are the most bothersome times, when it really interferes with my life.”

Sc10

“For me having the curbed activity. Not being able to play tennis. […] Being concerned that if I play tennis that I’m gonna get a headache or make things worse or maybe my ringing will come back. So, just not being able to be fully active. And concerns that if I don’t get this treated that something else might happen. You know. That I might have a stroke or something like that.”

Sc11

“It’s really just, I think, the impact of the quality of life and just feeling kinda crummy. The symptoms of profound fatigue and the head pressure just make you not want to do anything. And it also makes me grouchy, so I feel like I’m kinda grumpy. And I don’t complain to my family, so if I don’t feel well I don’t tell them I don’t feel well. I just am probably not the nicest person because I don’t feel well. I don’t like to complain about it because there’s nothing I can do…about it. I need to do something because it does impact my quality of life.”

Sc12

“The headache…It just doesn’t stop. It just ruins my day, and night.”

“Well, I just can’t get out of my own way. Like, we were trying to take a walk up our road, and I just –My husband had to go back home and get the car. I just wanted to lay down in the road and go to sleep. I have no energy. I have no strength at all.“

Sc13

“Assuming all my eye problems are because of this, and I am for the purpose of this conversation, I would say all the eye issues. The other things I can work around, but if I’m potentially losing vision, color vision, I can’t see. I have to close my eyes by 6:00 every night. I mean, that’s completely life-limiting. So, the pain, pressure, the eye situation, it’s a handicap. I mean, I am handicapped by it.”

Sc14

“Being limited on what I can do because I’ve always been a go getter. I like getting stuff done. I like that feeling of accomplishment at the end of the day, but this has just stopped me in my tracks. I just can’t do what I used to could do, so that to me has been the most frustrating.”

Sc15

“The headaches, the pressure, and then the whole cognitive. I know I keep saying all of those, and I don’t know if you want me to choose one, but if I had to choose one to say, “Okay, you can only fix one, you can only solve one,“ oh my god, I think I would be like – I don’t know, ‘cause they’re all pretty bad. The cognitive is more all the time kind of, so to speak. The focus or even, again, I wake up and I can’t pronounce California. I can kinda see it, but I can’t pronounce it. That right there is very frustrating.

The headaches, the pressure – the headaches, again, are not all day, for the most part, unless I have a bad day and then I have a headache all day. But it’s not that headache that is just like something punches you in the head, type of thing. But those right there are where I ask my partner, “Can you check on me in the middle of the night, please?“ So, those are very painful, and I feel like something’s gotta be happening that is not good. This is not good. I don’t know–”