Episode 3: Gassing Up My Pseudotumor
Updated: Feb 28
Hello and welcome to episode three of BrainFart! Today we are continuing my “Pseudotumor Saga,” and I'm gonna get a little more in depth with my specific journey involving it, I'm gonna give a little more information and get a little bit more specific.
It's kind of been the main topic of this podcast, thus far even though I promised other content - but I think it's important to come lay out this ground work before I start talking about the other things that stemmed from it, involving emotions as well as other illnesses. So I'm just gonna break that down today!
And it all starts my freshman year of college, I think - we think. The problem with Pseudotumor, or Idiopathic Intracranial Hypertension, or whatever you wanna call it. (They decided they wanna switch the names because Pseudotumor had weird negative connotations that were misleading - 'cause sometimes I tell people I have it and they think I have a brain tumor. And they say, “Oh, how big is it?” And I'm like, “Well, it doesn't exist. It's just fluid. It's not a mass, but... Thank you.” So that's why they're kind of changing it to Idiopathic Intracranial Hypertension - which makes sense, because ‘idiopathic’ essentially means ‘no one knows where came from;’ and then intracranial is in your cranium or your brain; Hypertension, which is fluid build up. So it makes sense that name makes a little bit more sense. Pseudotumor is, I think, a little more obvious, but not to some people).
So back on track, where... What was that talking about?
Oh - so the problem with IIH, PTC (those are acronyms I might be using), I think no one's quite sure why it happens. As much as my research has told me, everyones’ kind of happens for a different reason, or comes from a different thing or occurrence. There's really nothing linking them. I think with mine, mine was a very specific occurrence that happened that kind of started this snowball effect; while other people get it from this certain birth control that was out that affected people, or sometimes it's seen in people who are labeled clinically obese.
There's really no rhyme or reason, and that's why it's such a weird little bugger to get. So for mine - what I have come to the conclusion with and what my family has kind of decided (I don't know if this is like our way of coping with me having it, but we've kind of decided why we think I got it rather than just being lost in the dark)...
My freshman year of college, I was a part of a production, and about two days before we opened - I had this roller skating moment and - I fell and broke my butt. Yes, my butt. Or I guess the more correct term would be coccyx, I broke my coccyx [laugh], so that happened. And I continued the show, I did everything, I was fine. There's not really anything you can do about a fractured coccyx. Because it's your butt - you can't really cast it, you just do a little bit more standing and sitting on these donut pillows. But then I never bought a donut pillow because I was too lazy, so I would just wrap a scarf kind of in a donut shape and just sit on that instead.
That happened, and it just kind of was a bummer. I still, when a cold day or a cold breeze blows in or a cold front comes around, I feel a little aching [chuckle] in my butt, and I know that the weather is changing; or if I sit on a hard surface for too long, my butt aches - you know, just all of those butt issues you have. So that happened and that was over, and I got better, it was better. And then the next year, almost a year to the day (probably a month off the date), the Pseudotumor happened. (So keep the butt thing in mind.)
So we're back at where I've kind of talked about this night and the night that it happened, and guess what? I'm still not gonna talk about it because next week I'm actually gonna bring in a friend of mine who was there with me, and she's going to give a probably more detailed account, because she remembers it and I have no recollection. So she's gonna come in and we're gonna talk and we'll have a little powwow.
[Future Maddi here - at the time of this episode’s recording, I didn’t know that the term ‘powwow’ shouldn’t just be used by anyone to refer to any meeting. I know now that this word is not for me to use in this way, and I apologize. I’ve chosen to keep my incorrect use of the term ‘powwow’ here to shed light on why non-Indigenous people shouldn’t use the term like this - here is a link to an article on related terms that shouldn’t be used by non-Indigenous people, and why: https://www.insider.com/native-american-offensive-racist-things-2020-1#stop-referring-to-meetings-as-powwows-1 ]
But so what happened? You guys kind of know what happened, I was fired from the show... All that stuff happened. And the first night in the hospital, I was sent home like eight hours later. I went there, I couldn't remember my name, I couldn't really think of anything, I was just sobbing. And you know what they thought it was? They thought it was drugs. They literally drug-tested me for every drug imaginable, and it came back clean because I'm a good girl (mainly I'm just a scared girl, and I haven't tried any of them, and they worry me [chuckle]). But I came back clean and they were like, “Oh well, maybe you're just hungry. Eat this sandwich and go home,” and I was like, “You know what, thank you for that medical advice. That's exactly what I'll do.” [chuckle]
So I went home and the next week I kind of was deteriorating…. Rapidly [chuckle]. Like I said, I had all of the symptoms of what I have in my episodes, but on steroids, it was so bad - to the point where one of my acting teachers came into the bathroom and found me during class one time and she was like, “Okay, I talked to my friends, I found a neurologist that she trusts, you're calling them right now you're setting up an appointment for whatever time, I'm driving you there and we're fixing this, we're figuring it out,” and I was like, “Okay!” I love it when other people do the work for me! [laugh]
So I called and they set up an appointment for the next day, which was a Wednesday, which was a week from the first really severe episode. I went to the doctor and I just kind of told her, I was like, “You know it, I don't wanna be admitted to the hospital again, I had a horrible experience. So please, just to do what you can,” and she was like, “Okay, we're gonna try and do these tests” - they wanted to do an EEG, which is basically when they put a bunch of wires on your head to figure out if you're having seizures (and probably a bunch of other things), basically to measure your brain wave lengths and stuff. So she wanted to do that, she wanted me to have an MRI, she had all of these lists of test she wanted to do, and as the appointment progressed, she realized that I couldn't be let go, that I needed to go to the hospital, so she admitted me, and that was the start of my five-day stay, or four-day stay. Something like that.
And so I was admitted. I got an MRI - [chuckle] I have kind of a gross story and I'm debating whether I wanna tell it, but I think I'm gonna tell it because who cares... This is my podcast...
I was on my period when I was there, and I was getting the MRI done, and you know, you sit in the big machine… If you don't know what an MRI is, you can look it up for more specifics, but basically you go into a big tube and it just scans you. It's a more formal x-ray. So I was in the machine for a while, you have to sit still. So I was just sitting there and everything was fine, and then they moved me to a traveling gurney and then they brought me to the room, and then my teacher... She asked if I was on my period. And I went, “Yeah. How did you know?” And she goes, “Oh, because you bled through both the MRI table and the travel gurney,” and I went “Great.” [laugh] Just icing on top of the cake.
Okay. But so back to the story, I'm in the hospital. They're doing all these tests, no one knows what’s wrong. The doctor that I initially saw, she up and left, she was like, “Girl, I wanna see this through, but I'm going on vacation. So here's another doctor,” and so the other doctor came in, and this lady was not the greatest lady…. She didn't really believe me or what was happening to me, she came in after about a night on the EEG, and I was still having seizure-like symptoms, and she basically was like, “Girl, we checked here, EG, you're not having seizures, so you're faking it. We don't know what it’s coming from,” and I started bawling. I was sobbing, because I was like “What?!” How do you fake a seizure? I don't know… what is that? How? What? I was so shocked, and then I started thinking and second guessing and I was like, “Is this all in my mind? Am I'm making this all up? Like, how could I do that? How could I have that good of an imagination to wanna be... Why would I wanna be sick?” I’m getting worked up here. But so she said that, but then she did say that they saw a cloudy like “shadow” or something on my optic nerves in the MRI, and that's when she brought up... Pseudotumor.
And she mentioned it and she was like, “We need to get an ophthalmologist in here for your eyes to check your optic nerves to see if they're swelling ‘cause that's a tell-tale sign.” And then she also wanted a spinal tap, she wanted a lumbar puncture to see - 'cause a big thing they test is when they do the lumbar puncture, is if there's a high pressure of fluid coming out, that means that the fluid is building on your spinal column, and so that is a sign, or one of the indicators that you have Pseudotumor. And so at this point in my hospital stay, my mom had flown out from Las Vegas. There was a moment where my aunt who lived in New Jersey came to visit me and she called my mom and she was like, “I think you need to be here, this is getting a little serious.” And so my mom was there eventually, and I ended up getting the spinal tap.
So, [chuckle], they wheel you down to this room, you lie prone on the table, I don't know how, like Jesus on the cross style [laugh], your arms are splayed out and you're laying there. I had really nice nurses. The doctor came in, he did a little “boop-boop” and put the needle and tube into my spinal column, and then I sat there. Then they tilted the table and I was not strapped in, and I thought I was going to slide off that table! I'm sure they only had it tilted a couple degrees, but to me it felt like a solid 60 degree tilt. And I just waited there while my spinal fluid dripped out of my body and into a tube. Oh, and then the nurse after let me see it! He was like, “Look, it's clear, that's healthy,” and I was like, [chuckle] “Cool!” And it ended up being that my opening pressure, I was higher than normal. It wasn't severely high, which is what they kind of look for, but it was higher, so they were like, “Okay, that's a tick in the box for Pseudotumor.” And then the next day, the ophthalmologist came in and he dilated my eyes and he looked at my optic nerves, and he was like, he was like “Yup, yuppers. She’s swollen.” And so that kind of solidified that diagnosis. I also have to mention that after I got the spinal tap, it felt like... It felt like a release of pressure. I felt better. Which freaked me out even more 'cause I thought… “There was no way that this made me feel this much better that quickly,” and I told my doctor that and she was like, “Well, that's another tick in the box, because that just goes to show that it was so uncomfortable with the pressure that when we drained it, you felt immediately better.”
And so I was diagnosed and they decided to put me on Topamax, which is actually more of an anti-seizure medication, but it helps become a diuretic. So I was on that, and I left the hospital. I was back in school, and I was seeing my neurologist every week to every other week. I came in after I think the first two weeks of Topamax, and I was having horrible reactions… I can't even remember, I just remember needing to be off it and I was saying that I wasn't feeling better, like my symptoms started to come back, and I was also getting a... Oh, that's what it was! I was also puking in the middle of the night, always! I would feel so sick in the middle of the night, and I was feeling really paranoid, and all this stuff, and I was like, “What's going on?!” And my doctor said, “Okay, let's just switch you.” So they ended up switching me to a diuretic (which is basically just to help drain the fluid, it’s a diuretic, it’s what it sounds like), called Diamox.
I started, I think pretty light on that, probably like 100 milligrams a day, which wasn't awful, but then my symptoms just kept coming back, they just kept getting worse and worse. So we just kept upping diamox to 250 or 500, to one 250 day, and then one 500 a day, to two 500. So I was taking a 1000 milligrams or a gram of Diamox every day, just in different ways - taking it for long release, so it would release over the course of a day, and sometimes not, and so it was just trying to figure out this medication and that was going on for months and months, and I was still having my Pseudotumor symptoms, but then I was also having symptoms from this medication. I would start losing feeling in my hands and my feet, and so I couldn't really dance anymore because I had no feeling in my extremities. Obviously I was peeing all the time. I mean, I already peeled the time, but when you're on a diuretic, it was constantly... And so it was just all of these symptoms, and my eyesight was doing weird things, and I was feeling weird things emotionally. Obviously, I had just gone through kind of a traumatic experience as well as a traumatic... I don't know, traumatic diagnosis, just something that was not what I had expected in my lifetime to be diagnosed with at 19 - no one ever expects those things, but you are.
I was just still feeling like butthole. Like just a poop.
And we were doing everything in the book - we being me and my parents - and I ended up finishing my sophomore year of school, and I went back to Vegas for the summer. It was just the worst. The worst, it was the worst it ever got. I was basically living on my couch in my house because I didn't wanna walk upstairs, I didn't wanna watch TV, I didn't wanna talk to anyone, I didn't wanna listen to music, I didn't wanna read because it was all too overwhelming for me. I couldn't even paint, I couldn't do any physical activity other than getting up, walking the bathroom, peeing and then walking back to the couch... I mean, my mom would ask, she was like, “Do you wanna watch TV? Do you wanna watch movies?” And I was like, “Sure, put them on,” and then I’d just fall asleep because it was too much for me. I couldn't even talk to my parents really, because I couldn't think of things to say - I didn't know how to phrase things. And then I would just get frustrated, and I would take it out on them and I would yell at them and I’d say, “How can I live with this? How can I do this career if I can't even get off the couch?” It was getting hostile and bad - and I have always had an incredible relationship with my parents. They have been my number one since day one, I've always been very close with them, we never went through a period where I became really angsty and doing all that stuff - but this was like my angsty period at the ripe age of 19, turning 20. I was anxious and mean and lashing out of them, packing all of my teenagers into this one summer. And of course, my parents are just horrified at what I had become. And the thing is, they try to understand as much as they could, they never took it out on me, they just let me say my piece and tried to help as best they could. We were seeing specialist after specialist: I was going to get acupuncture, and I was getting reiki done… I was still on my medication and that wasn't working, so we were like, “What if we tried this?” - and I was going to a chiropractor to see if he could help me because I wouldn't move, so I was basically just like crystallizing, like I couldn't move things anymore. So we were going all of these separate doctors, it was a different doctor every single day for weeks and weeks and weeks. We just weren't figuring out what was going on, and we were going to my ophthalmologist, and my eyesight was getting worse and it was like, “Oh no, we're on a downward spiral and we're not stopping!”
Until - my dad had a client come in (he's a lawyer), and she talked to him about this guy in Vegas, who was a specialist in ‘neuro-muscular movement retraining.’ She had gotten into a car accident and she had hurt her shoulder, I believe (I could be getting this wrong, [chuckle]). Essentially, she was very injured and she went to him, and he helped train her body to basically heal itself. He worked with her and helped her and everything until she felt great again. And to my dad she said, “Maybe this would help your daughter!” ‘Cause my dad had mentioned me.
Well, I was so skeptical about it at first 'cause I was like, "How” Nothing else is helping me. How is this guy supposed to help me?” Oh, and not to mention that I had just met with a neurosurgeon and we were a couple weeks away from deciding on surgery, deciding to put a shunt into my head. So basically what a shunt is - (sorry, I have to backtrack, this is very important), a lot of people with PTC or IIH have a shunt. It's basically this implant that goes into your brain: they cut you open in your skull and they plop it on your brain, and it basically is… (How do I describe this?) It measures the pressure in your head and there's a tube connected to it, and then the tube does a little nice snakey train down your skull, down your neck, down your shoulders, all the way into your tummy - it's all on the inside. So it goes into your stomach, and basically what it does is it measures the pressure in your head, and you have it on a setting that it drains the fluid from your brain, the device collects all the fluid and it drains into the tube into your stomach.
There's different kinds, and you can go more in-depth with it all. We are figuring out what would be the best one for me, and I was really worried 'cause I was like, “Will I be able to dance again? What happens if it doesn't work?” I was reading all these horror stories about people having to go right back in after surgery to fix it or to adjust it - which people do deal with, it wouldn't have been the end of the world if I got it - most people with IIH and PTC get it. But so we kind of thought was the route we were taking, and I was talking about it with my neurosurgeon, and then this is where that that man came into play with how my dad heard about him. We were on the train to ‘surgery town,’ and my dad kind of wanted to get off at the next station [laugh]. (That was such a weird analogy for whatever). So basically he didn't really want me to have brain surgery - I mean, it's a pretty straightforward procedure or nothing too outrageous, they've done it many times - but of course, my dad didn't want me to have brain surgery and neither did I!
So we heard about this doctor and I was super skeptical 'cause I was like, “How? How is he gonna help me? How was that gonna work?” And so I went in - and I worked with this man for... God, like the two to three hours a day, for every day to every other day, for five weeks. I would go in and he would basically just try and get my body back to its optimal place, to optimal healing position. And I know people are gonna be like “That’s hippie-dippie, this sounds weird,” whatever, but honestly it worked for me, and that's all that matters. And so it took a while, I'm not gonna lie. It took a while and it took hard work - and this is where my broken butt comes into play. Because this is the conclusion that we came to:
We have this theory that when I broke my coccyx it kind of solidified, it healed itself in a way to protect it, it became very static and it wasn't moving a lot, and so it kind of stopped production on everything to protect itself. So when your spinal fluid (I think I mentioned this in the first episode), moves up and down your spine. So when it was getting to my coccyx, in my sacral area, my sacrum, it was hitting this bad patch and it wasn't able to go back up or come back down as easily as possible. And on one of my brain scans, one of my ventricle systems in my brain is slightly narrow - not significantly to the point where you'd be like “Yep, that's the cause,” but so much so that I feel if I had something else going on, it would be significant enough to cause a problem. So that is the theory we came to - because no one else had any other theories, they didn't know where it came from, so we are just writing my own story. [laugh]
That's what we think it is, and that's what I believe it is. Because after doing this training, it helped! I was doing so much work, and it was so physically and mentally exhausting. For the first five or six sessions, I would go and it would help relieve the pressure and the pain a little bit, but then it would come back on immediately when I left. And as I kept going, it would become a little bit longer where the pain and the pressure wasn't building up. We were massaging out my tight muscles, and then we were working my weak muscles just so my body could get to its basic healing mode again.
It's hard to describe this because it's a very unique process that I had never heard of up until this point. Honestly, if I heard about it, I don't think I would have believed it, and I'm sure a lot of you are confused and don't really know what it is. I have to say, if I didn't experience it help firsthand, I would have continued to be skeptical. But after probably the second or third week, it started reversing to where I was feeling better most of the time, and there would only be a couple occasions where I had pressure or head things. It was amazing 'cause I felt like I was becoming myself again and I could talk more and I could talk longer and I could go outside longer and not be completely exhausted, and I was basically healing myself that way, and then of course I was like, “Okay, I gotta eat healthy!” Gotta help the body in any way I can. I mean, I think your health really affects you, because it's your body. I don't think it's an end-all-be-all to curing, but I think that if you can help your body in any way you can, you should.
I was getting better, which felt crazy because it was such a different method to go about. I'm not saying this method will cure all people with IIH or PTC or anything, but I think because of my unique situation and what I think might have caused it, it really helps for me - and I think that's the way you have to deal with this disease. You have to see what works best for you. Because I went back to my neurosurgeon after, and he saw how much better I was doing. He was shocked, and he said, “Did you up your medicine? What did you do?” And we told him about, it and he was like, “Great, that's incredible. If something is working for you, that is what we need, I don't wanna go in and give you brain surgery, I don't wanna do that because you're young.” And lots of young people deal with traumatic surgeries and a lot of things that are hard on your body - of course they live and survive and thrive, it's not like it would have killed me or been the end-all-be-all for me, but he just was very much in the mindset of, “Let's do whatever we can to help you before we do the surgery.” And so he loved it! He loved that it was working for me, he said, “As long as it's working for you, keep at it. And we'll continue to check, you'll have to go to your opthamologist to make sure things aren't getting worse,” all of that stuff, and so we did.
This allowed me to go back to school. Because there was a time where I was like, “There's no way I can go back and go to school, how can I? How can I possibly go to school in such a demanding major and two minors, and not be able to get out of the couch?” It would have been impossible, I couldn’t even talk to people, let alone be around people. But after these exercises, I was able to go back to school! And I was in a show, and I got to do the show, and I was physical in the show, I was dancing in the show, it was incredible. I just continued with the exercises he gave me and all of my other things to help, when I would go back for winter or summer break I would visit him. He would see me with no extra charge, he would wanna help me and fix me in whatever way he could. And he always was there, I could always call him and ask advice if something was happening, he was there. And I was still seeing my neurologist - everything was still looking fine. So we were all just kind of like, [chuckle] “Okay, we're gonna leave it and hope it's good.” And I was going to my ophthalmologist - and my eyesight is still a little up and down, I'm not gonna lie. That's still the one I'm trying to figure out the most.
I'm not gonna sit here and say that I'm completely healed - 'cause I'm obviously not. I still have episodes and sometimes they're worse than others. But I'm just lucky that I found something that works for me. I do well with it, and so I'm gonna stick with it as long as I can before I have to go on more diuretics or do something else, because it works for me.
The thing is, there's no end to the pseudo-tumor story. It just continues and you just hope there's a little reprieve until the next big funny story comes out of it (not funny, but later on it, it's funny).
So yeah, I just kinda wanted to break down the medication I was taking for the Pseudotumor, what helped me get back to a productive state for me. That's the story I wanted to tell.
I think next week will be interesting because - you thought this was more detailed? - next week, it's gonna get even more detailed when my friend Sarah comes in. She is someone I attend school with, we've been close since freshman year. She's one of my best friends. She was there - I had lots of friends who were there with me - but she kind of was the main one because she was the first one they called when it first happened, so she went to the hospital with me, and she was there the second time - so she's seen first-hand how it's affected me. And so I wanna bring her in to give you guys more details and more insight about that.
And I think that's all I wanted to say.
Oh! Dang it! I wanted to tell you, I named my Pseudotumor. Her name's Psandra [pronounced Sandra], with a P.
I'm sorry if anyone out there listening [or reading] is named Sandra, but we call her Psandra T for Pseudo-Tumor. Yeah. We co-exist, we live together. I like it when she's a quiet roommate and not a rowdy party girl.
So there you have it! Next week we have Sarah, and then the week after that, I am finally going to dive into Lyme, Epstein-Barr Virus, wormy-McWormy-town, and… (What else do I have?)... Oh, Hypothyroidism [laugh]. So I'll go more in-depth with that that week. I'm not gonna do hormonal female stuff because I'm gonna save that for another-nother week. And I'm getting ahead of myself yet again! So that's when you have... [fumbling over words] That's what I had for... And look to... No. Okay, let's rephrase.
That's what you have to look forward to. There we go!
Alright, thanks for listening, guys, I hope you got some information. Of course, if you have any questions, most of you are my friends, so feel free to just text me. If not, please reach out. I have an email for BrainFart now, it's email@example.com. So if you have any questions or tips or corrections ('cause you know your girl isn't a doctor,) email them in and I will try to answer them or I'll email you back or I'll talk about it on the upside.
So thanks, guys, thanks for listening and I will talk to you next week, okay?
Have a good whatever time it is.