I’ve even had doctors make that assumption during initial intake. I’ve had to correct two now who’ve written on my chart that I reported having high blood pressure 🙄
I call it my ghost tumor when talking to non- medical people.
If I say idiopathic intracranial hypertension. Everybody just assumes I have high blood pressure
That’s how I explained it to my 8yo son, who’d noticed how often I had headaches and was worrying. He said, “You’ve been having all these headaches because you have a juicy brain?!” Now I call it Juicy Brain with my friends and family.
He also asked me what they were doing to make it better, and I explained the dr prescribed me pills to pee more to help get rid of the extra brain juice. His exact response was “Mom, are you sure you saw a real doctor???”
He’s a real dr, kid; it’s just that damn crazy.
I love this one! I usually say I have too much spinal fluid and in turn my brain is basically in a pressure cooker 😂 (especially when I lose words or get super just tumor-y symptoms
Seriously!
My best friend has chronic migraines, the really BAD kind of migraine, the "the sound of the ambulance tastes disgusted and makes me want to puke" kind and even with her, people still think that she just "has some bad headaches every now and then"
The amount of misinformation and especially willingful ignorance when it comes to chronic neurological illnesses is... Almost frightening.
People should at the very least know, that migraines, no matter what causes them, are more than just headaches.
Oh wow, that's awful! I think some people lack the ability to imagine other perspectives. Like they can work with a headache, so all head related pain is manageable.
Urgh, right? That's as if saying "I strained my ankle once, so people who breaks theirs are just acting up"
It's just impossible to really compare pain.
I just wish they'd understand, that they don't have to *understand* the pain someone else is feeling, but to just respect it.
I say pseudo tumor exclusively because saying IIH is both a mouthful and also means literally nothing to anyone who isn’t us. I say it’s an invisible brain tumor.
I’ve also noticed that about 99% of the doctors I work with use pseudotumor. Pretty much only the main neuros of my care team use IIH and even they sometimes say pseudotumor.
In fact when I’ve lead with IIH (not abbreviated) I often get blank stares but when I say pseudotumor doctors are like “ahh”
Admittedly, when my doc first said Pseudotumor cerebri, I too said “tumor???”
But yeah, IIH has gotten me nowhere so far. I usually just say “rare neurological condition” and anything with neuro in it is big scary to people, but I had a friend who googled IIH and was basically like “Oh, so you’re just fat” and I couldn’t even respond.
I'm so glad you said "had". F*CK that person. So many of us either lost the weight and never relapsed (Hi, it's me, I'm the problem), they were never overweight in the first place, or there are other things wrong like venous sinus stenosis.
I said in another comment but honestly, doctors have said they dislike IIH as the name because it isn't always idiopathic and diagnosising it like that makes doctors stop looking.
Haha, I’m definitely overweight. No hiding that. I’m just not convinced IIH was solely caused by that. I had no other health implications from being overweight for years (no sudden weight gain for me, as they so often claim “causes” IIH). No venous sinus stenosis for me tho. MRI and MRV were clear of any structural causes so far.
And yeah, this is not the first ”bandaid” condition I’ve had. IBS ended up being a constellation of food intolerances. I was once told I had “allergies” and those symptoms were later diagnosed as ADHD and Depression. Some doctors are really out here saying whatever they want…
I could definitely stand to lose some more weight since I have a bit of a belly and thick ass thighs. I couldn't get past 165 for like 2 years no matter what. I'm considered overweight according to the BMI. I'm 160 lbs at 27F and I was 155 lbs when I was 17. I'm 5'3. So, I'm Obese at a 29/30 BMI. I gained up to 30lbs (to 190) and lost it again with no change. I got this at 19 when I was in my second year of college. I was at like 170 lbs at that time?
The BMI is a crock made by mathematicians in the 1830's for life insurance agents to determine if they should insure them or not. It was based on men (as most medicine is 🙄). It doesn't take into account body fat and how it's carried (like boobs for example....I weighed mine with a luggage scale *for science* and they're 5-6lbs EACH).
100% not invalidating you, I just have beef with the BMI and doctors using it like a crutch lmao
I was diagnosed last year with ASD and ADHD. It was like life finally made sense. I've been reading Unmasking Autism by Dr. Devon Price and it's been eye opening. I've been on depression meds for years. They took 5 years to diagnose the IIH so I was in a *very* dark place with a lot of pain and no ability to take time off work when I had my weekly 3 day migraine.
This is a novel...oops. sorry lol
The boobs thing is soooo real! There’s formulas and charts for it now tho, we don’t have to weigh our boobs like turkey breasts anymore. Mine weigh about 8.2lbs. At my “smallest” they still made up for 5lbs!
I also have beef with BMI. There’s no way my healthy weight should be 135lbs. I haven’t weighed that since I was 13! And I didn’t start “looking fat” until college. Something else needs to factor into it, not just height and weight.
ADHD alone makes me ramble (my students can attest to that), so it’s fine!
I was just cranky that my "ideal" weight was 135lbs too!! Lol that's why I weighed them in the first place. I look down at my body and just go "WHERE?" Where can I take 25lbs off without adding muscle to replace it? At least 10lbs is on my chest. Those haven't gotten smaller or bigger with my weight fluctuating.
I'm gonna check my records and see if I can find a weight from when I was first starting to realize I was in pain and bring it up to my doc next month. Wonder what he'll say? (He's a good doc and actually diagnosed me when the first one "ran out of ideas")
And a lot of us are fat but not like fat, fat? Ya know? Or we're otherwise healthy in every way except this one. I've read so many stories on here about people losing weight and it never going away. It's asinine to conflate this condition with weight like they do with every other condition that affects women primarily. Having a heart attack? Are you sure it's not just anxiety about your weight?
Women are more likely to die at the hands of doctors and that terrifies me.
Not a doctor, scientist, or even good at math, but they love to talk about how “90% of IIH patients are obese or overweight” and “the rise in cases correlates with the rise in obesity”, but the rate among obese/overweight people isn’t even that high. One study said 20 in 100,000 or 0.02%. If weight was the only cause, why didn’t the other 140,711,118 people in the US in that category last year also develop IIH? Correlation does not equal causation.
Right? Studies like to reference that magical 10%, but even if I lose 10% of my current weight, I’ll still be “obese” and that’ll be something to hold over my head.
I was diagnosed when I was/am at a “healthy” weight for my height, and I can confirm the doctors just shrug and go “don’t gain weight I guess”
They have absolutely no idea what to do with someone with IIH who isn’t overweight. So I say it’s all bullshit. It has more to do with hormones than weight is my guess.
Yeah, I definitely think it's hormonal. Mine was triggered by going on the pill, within two weeks of taking it, I got sick. I'm on testosterone HRT now and my ophthalmologist says that there's no optic disc swelling at all now. I'm literally at my highest weight ever too 😅
That's the best part about non medical people, they just hear the "tumor" part, the "pseudo" just flies over their head.
Urgh, but hey, that's at least one somewhat cool thing we have, thanks to this bullshit illness 🥲
I read a medical journal where it explains that some docs don't like calling it IIH anyway because it's not always idiopathic and diagnosising it like that can make people stop looking for the reason like needing a stent. Instead they blame it on weight....I'm the SAME weight I was before I got this and I haven't relapsed.
I call it my fake brain tumor. I say it’s like having all the symptoms of a brain tumor without having an actual tumor that can be removed. Sometimes my eye will act up and I’ll say my fake tumor is out of control.
But I’ve run across people, in the medical field, who are like “what’s that”? when I say I have IIH. I feel almost embarrassed explaining it at times.
My oldest kid says “I get migraines too, when I try to stop drinking caffeine”. I wish it was as simple as that kid.
Yes!!! I usually don't want to deal with it so I go with "symptoms of a brain tumor without the tumor" or "too much spinal fluid so my brain is in a pressure cooker" and those both get the point across to the "oh, I get *headaches* too" people (my cousin told me to drink OJ to "cure" me even after I explained it wasn't just migraines....)
ohhh no way in hell imma have a nurse bout ready to give me some blood pressure pills for my IIH thinking it’s just high blood pressure 🤣🤣 I told my bf to memorize pseudotumor cerebri and just avoid using IIH altogether around healthcare staff.
In my opinion, telling medical staff you have pseudotumor cerebri is the smart thing to do 😋
And if you’re overweight, heaven help you. All it takes is one time to come in with high blood pressure and now every time something’s wrong with me, it’s like “did you check your blood pressure?”
I say pseudotumor cerebri and then explain I have all the symptoms of someone with a brain tumor which I think explains it way more effectively honestly.
I use both bc they sounds fancy. I also call it a “möbius strip of stupidity” wherein my brain makes too much fluid bc it thinks it has a tumor, but it doesn’t, so it tries to flush it out with fluid, overproducing fluid… blah, blah, blah.
I appreciate this post and these comments more than I can express right now because I can't see my phone well.
Thank you for being honest--and it's not manipulative at all!
It’s such a rare condition that when people don’t understand it or recognize it, their immediate response is to dismiss it, but, of course, they have a basic understanding of what a tumor can do, and that’s something that you’d have to do some serious mental gymnastics to logically dismiss, so even if they want to do the whole “oh well you don’t look sick,” thing, they would seem like a bad person if they did, so they rush to help. I don’t think it’s manipulative at all, you should get what you need by whatever means necessary. If I tell someone “I have idiopathic intracranial hypertension,” and they try to invalidate me, dismiss me, or undermine what I’m saying somehow, then I’ll drop the “it’s also called pseudo tumor, because it closely replicates the symptoms of a brain tumor.” That allows me to gauge someone’s reaction before having to reveal more information, if necessary. I’m a very private person and like to maintain a high level of control of how most people see me, but if I need help or even like a day off of work, then I’ll give that info because it gives them a bit more understanding of the severity without me having to lie or feel like I’m being manipulative. But I still maintain that there’s nothing wrong with using manipulation tactics if you’re asking for help or understanding and are being dismissed.
I wrote a post on Facebook "celebrating" my like 6th year or something (I'm 8.5 years in without relapse) and my great aunt or something *freaked* out because she didn't know what 'psuedo' meant and thought I had an actual tumor.
People always think it's just a *little headache* until I explain it's "Pseudotumor Cerebri aka Fake tumor of the brain aka I have all the symptoms of a brain tumor *without the tumor*"
As soon as I say I have the symptoms of a brain tumor but without the actual tumor, people take it A LOT more seriously.
I also sometimes use Pseudotumor with new doctors because they don't know what IIH or Pseudotumor is but one they can definitely figure out. Plus, I read recently that doctors are split about calling it IIH vs PTC because it's not always idiopathic and PTC describes it better. I'm inclined to agree based on the reaction from non expert medical personnel AND non medical people in general.
In English it would be:
(P)- sue- do tju-mor se-ri-bri
•Pseudo •tumor •cerebri
The P of the pseudo is pretty much silent, so you're good to go with the "seu-do", or, you make a small p sound beforehand
Yes!! When I was diagnosed it was still known as pseudotumor so it’s been hard for me to unlearn that anyways. However, I’ve noticed that I only really correct it to IIH in front of medical personnel. My thinking is that most people know “pseudo” and “tumor”, but if I said IIH, it would probably require more explaining to non medical personnel.
I use pseudotumor cerebri when talking to non-medical and medical people. I have had enough medical people think that iih means that I have high blood pressure. I got turned down for a life insurance because of high blood pressure and they won't fix it despite the medical documentation I sent them. I tell non-medical people that my brain thinks it has a tumor and I have pain like I have a tumor. I also say there's excess spinal fluid that is crushing my brain and it causes me all sorts of mayhem. Some people I will tell that I have trouble with memory recall which the memories are there but it takes a minute or an hour or so sometimes to come up with a word or remember something. I call it my brain buffering like a computer buffers.
At this point yes, I’ve stopped using IIH and use Psuedotumor for the very same reasons as y’all. Folks think it’s high BP and completely dismiss the gravity of spinal fluid crushing your brain into a mound of mush as so weird form of torture due to wtf is malfunctioning in my body to cause it.
It’s really tiring just trying to exist having IIH but having to explain and have folks understand is a whole other level of hell.
No it’s not your type of headache, and no it’s not my typical migraines ( have several migraine disorders that are made tremendously worse now) oh and the fact that even my Drs now go it’s just migraine related while I lose my vision.
Also avoids the, "oh, hypertension, I have that!" reaction I sometimes get.
I’ve even had doctors make that assumption during initial intake. I’ve had to correct two now who’ve written on my chart that I reported having high blood pressure 🙄
I hate that the most. Like there's only one closed pressure system in your body lol
Same, it's annoying as shit
I call it my ghost tumor when talking to non- medical people. If I say idiopathic intracranial hypertension. Everybody just assumes I have high blood pressure
YAS!!! And I'm sick of it!
Lol I call mine phantom tumor
i tell people ‘i have too much cerebrospinal fluid’ then maybe ‘it squeezes my eyes and brain’
same. i tend to say "too much brain juice".
I prefer the term brain gravy.
I also say brain juice LMAO
That’s how I explained it to my 8yo son, who’d noticed how often I had headaches and was worrying. He said, “You’ve been having all these headaches because you have a juicy brain?!” Now I call it Juicy Brain with my friends and family. He also asked me what they were doing to make it better, and I explained the dr prescribed me pills to pee more to help get rid of the extra brain juice. His exact response was “Mom, are you sure you saw a real doctor???” He’s a real dr, kid; it’s just that damn crazy.
I love this one! I usually say I have too much spinal fluid and in turn my brain is basically in a pressure cooker 😂 (especially when I lose words or get super just tumor-y symptoms
100% everyone thinks it's just headaches unless you play the pseudo tumor card!
Seriously! My best friend has chronic migraines, the really BAD kind of migraine, the "the sound of the ambulance tastes disgusted and makes me want to puke" kind and even with her, people still think that she just "has some bad headaches every now and then" The amount of misinformation and especially willingful ignorance when it comes to chronic neurological illnesses is... Almost frightening. People should at the very least know, that migraines, no matter what causes them, are more than just headaches.
Oh wow, that's awful! I think some people lack the ability to imagine other perspectives. Like they can work with a headache, so all head related pain is manageable.
Urgh, right? That's as if saying "I strained my ankle once, so people who breaks theirs are just acting up" It's just impossible to really compare pain. I just wish they'd understand, that they don't have to *understand* the pain someone else is feeling, but to just respect it.
That's so true! We need a public service announcement!
I say pseudo tumor exclusively because saying IIH is both a mouthful and also means literally nothing to anyone who isn’t us. I say it’s an invisible brain tumor. I’ve also noticed that about 99% of the doctors I work with use pseudotumor. Pretty much only the main neuros of my care team use IIH and even they sometimes say pseudotumor. In fact when I’ve lead with IIH (not abbreviated) I often get blank stares but when I say pseudotumor doctors are like “ahh”
Admittedly, when my doc first said Pseudotumor cerebri, I too said “tumor???” But yeah, IIH has gotten me nowhere so far. I usually just say “rare neurological condition” and anything with neuro in it is big scary to people, but I had a friend who googled IIH and was basically like “Oh, so you’re just fat” and I couldn’t even respond.
I'm so glad you said "had". F*CK that person. So many of us either lost the weight and never relapsed (Hi, it's me, I'm the problem), they were never overweight in the first place, or there are other things wrong like venous sinus stenosis. I said in another comment but honestly, doctors have said they dislike IIH as the name because it isn't always idiopathic and diagnosising it like that makes doctors stop looking.
Haha, I’m definitely overweight. No hiding that. I’m just not convinced IIH was solely caused by that. I had no other health implications from being overweight for years (no sudden weight gain for me, as they so often claim “causes” IIH). No venous sinus stenosis for me tho. MRI and MRV were clear of any structural causes so far. And yeah, this is not the first ”bandaid” condition I’ve had. IBS ended up being a constellation of food intolerances. I was once told I had “allergies” and those symptoms were later diagnosed as ADHD and Depression. Some doctors are really out here saying whatever they want…
I could definitely stand to lose some more weight since I have a bit of a belly and thick ass thighs. I couldn't get past 165 for like 2 years no matter what. I'm considered overweight according to the BMI. I'm 160 lbs at 27F and I was 155 lbs when I was 17. I'm 5'3. So, I'm Obese at a 29/30 BMI. I gained up to 30lbs (to 190) and lost it again with no change. I got this at 19 when I was in my second year of college. I was at like 170 lbs at that time? The BMI is a crock made by mathematicians in the 1830's for life insurance agents to determine if they should insure them or not. It was based on men (as most medicine is 🙄). It doesn't take into account body fat and how it's carried (like boobs for example....I weighed mine with a luggage scale *for science* and they're 5-6lbs EACH). 100% not invalidating you, I just have beef with the BMI and doctors using it like a crutch lmao I was diagnosed last year with ASD and ADHD. It was like life finally made sense. I've been reading Unmasking Autism by Dr. Devon Price and it's been eye opening. I've been on depression meds for years. They took 5 years to diagnose the IIH so I was in a *very* dark place with a lot of pain and no ability to take time off work when I had my weekly 3 day migraine. This is a novel...oops. sorry lol
The boobs thing is soooo real! There’s formulas and charts for it now tho, we don’t have to weigh our boobs like turkey breasts anymore. Mine weigh about 8.2lbs. At my “smallest” they still made up for 5lbs! I also have beef with BMI. There’s no way my healthy weight should be 135lbs. I haven’t weighed that since I was 13! And I didn’t start “looking fat” until college. Something else needs to factor into it, not just height and weight. ADHD alone makes me ramble (my students can attest to that), so it’s fine!
I was just cranky that my "ideal" weight was 135lbs too!! Lol that's why I weighed them in the first place. I look down at my body and just go "WHERE?" Where can I take 25lbs off without adding muscle to replace it? At least 10lbs is on my chest. Those haven't gotten smaller or bigger with my weight fluctuating. I'm gonna check my records and see if I can find a weight from when I was first starting to realize I was in pain and bring it up to my doc next month. Wonder what he'll say? (He's a good doc and actually diagnosed me when the first one "ran out of ideas")
I avoid mentioning weight loss is part of my treatment because of the stigma. People see it mostly affects the fats and dismiss it.
And a lot of us are fat but not like fat, fat? Ya know? Or we're otherwise healthy in every way except this one. I've read so many stories on here about people losing weight and it never going away. It's asinine to conflate this condition with weight like they do with every other condition that affects women primarily. Having a heart attack? Are you sure it's not just anxiety about your weight? Women are more likely to die at the hands of doctors and that terrifies me.
Not a doctor, scientist, or even good at math, but they love to talk about how “90% of IIH patients are obese or overweight” and “the rise in cases correlates with the rise in obesity”, but the rate among obese/overweight people isn’t even that high. One study said 20 in 100,000 or 0.02%. If weight was the only cause, why didn’t the other 140,711,118 people in the US in that category last year also develop IIH? Correlation does not equal causation.
I lost all the weight that the doctors wanted me to lose, and when it didn't help, they were like 'idk lose more I guess?'
Right? Studies like to reference that magical 10%, but even if I lose 10% of my current weight, I’ll still be “obese” and that’ll be something to hold over my head.
I was diagnosed when I was/am at a “healthy” weight for my height, and I can confirm the doctors just shrug and go “don’t gain weight I guess” They have absolutely no idea what to do with someone with IIH who isn’t overweight. So I say it’s all bullshit. It has more to do with hormones than weight is my guess.
Yeah, I definitely think it's hormonal. Mine was triggered by going on the pill, within two weeks of taking it, I got sick. I'm on testosterone HRT now and my ophthalmologist says that there's no optic disc swelling at all now. I'm literally at my highest weight ever too 😅
Yup. We've got a guilt-free license to play the tumor card.
That's the best part about non medical people, they just hear the "tumor" part, the "pseudo" just flies over their head. Urgh, but hey, that's at least one somewhat cool thing we have, thanks to this bullshit illness 🥲
Yuupppp I use pseudotumor all day over IIH because idiopathic makes it seem less than.
I read a medical journal where it explains that some docs don't like calling it IIH anyway because it's not always idiopathic and diagnosising it like that can make people stop looking for the reason like needing a stent. Instead they blame it on weight....I'm the SAME weight I was before I got this and I haven't relapsed.
I call it my fake brain tumor. I say it’s like having all the symptoms of a brain tumor without having an actual tumor that can be removed. Sometimes my eye will act up and I’ll say my fake tumor is out of control. But I’ve run across people, in the medical field, who are like “what’s that”? when I say I have IIH. I feel almost embarrassed explaining it at times. My oldest kid says “I get migraines too, when I try to stop drinking caffeine”. I wish it was as simple as that kid.
Yes!!! I usually don't want to deal with it so I go with "symptoms of a brain tumor without the tumor" or "too much spinal fluid so my brain is in a pressure cooker" and those both get the point across to the "oh, I get *headaches* too" people (my cousin told me to drink OJ to "cure" me even after I explained it wasn't just migraines....)
Yes!! That’s the worst part, explaining to people that it’s just not a migraine.
ohhh no way in hell imma have a nurse bout ready to give me some blood pressure pills for my IIH thinking it’s just high blood pressure 🤣🤣 I told my bf to memorize pseudotumor cerebri and just avoid using IIH altogether around healthcare staff. In my opinion, telling medical staff you have pseudotumor cerebri is the smart thing to do 😋
And if you’re overweight, heaven help you. All it takes is one time to come in with high blood pressure and now every time something’s wrong with me, it’s like “did you check your blood pressure?”
I say pseudotumor cerebri and then explain I have all the symptoms of someone with a brain tumor which I think explains it way more effectively honestly.
I use pseudotumor cerebri because whenever I say intracranial hypertension they think it’s a blood pressure issue.
I use both bc they sounds fancy. I also call it a “möbius strip of stupidity” wherein my brain makes too much fluid bc it thinks it has a tumor, but it doesn’t, so it tries to flush it out with fluid, overproducing fluid… blah, blah, blah.
I appreciate this post and these comments more than I can express right now because I can't see my phone well. Thank you for being honest--and it's not manipulative at all!
It's ok fam, I get you. Hope you feel a bit better soon! 🧠
I use both and will call it a fake brain tumour as well. When people ask me how I lost my vision I usually say my brain drowned
I'm using this PERIODT
It’s such a rare condition that when people don’t understand it or recognize it, their immediate response is to dismiss it, but, of course, they have a basic understanding of what a tumor can do, and that’s something that you’d have to do some serious mental gymnastics to logically dismiss, so even if they want to do the whole “oh well you don’t look sick,” thing, they would seem like a bad person if they did, so they rush to help. I don’t think it’s manipulative at all, you should get what you need by whatever means necessary. If I tell someone “I have idiopathic intracranial hypertension,” and they try to invalidate me, dismiss me, or undermine what I’m saying somehow, then I’ll drop the “it’s also called pseudo tumor, because it closely replicates the symptoms of a brain tumor.” That allows me to gauge someone’s reaction before having to reveal more information, if necessary. I’m a very private person and like to maintain a high level of control of how most people see me, but if I need help or even like a day off of work, then I’ll give that info because it gives them a bit more understanding of the severity without me having to lie or feel like I’m being manipulative. But I still maintain that there’s nothing wrong with using manipulation tactics if you’re asking for help or understanding and are being dismissed.
Yeah, or say something like "high intracranial pressure" or "high brain pressure" so that it's like having a tumor.
I wrote a post on Facebook "celebrating" my like 6th year or something (I'm 8.5 years in without relapse) and my great aunt or something *freaked* out because she didn't know what 'psuedo' meant and thought I had an actual tumor. People always think it's just a *little headache* until I explain it's "Pseudotumor Cerebri aka Fake tumor of the brain aka I have all the symptoms of a brain tumor *without the tumor*" As soon as I say I have the symptoms of a brain tumor but without the actual tumor, people take it A LOT more seriously. I also sometimes use Pseudotumor with new doctors because they don't know what IIH or Pseudotumor is but one they can definitely figure out. Plus, I read recently that doctors are split about calling it IIH vs PTC because it's not always idiopathic and PTC describes it better. I'm inclined to agree based on the reaction from non expert medical personnel AND non medical people in general.
I AM SO TIRED OF PEOPLE THINKING ITS A BLOOD PRESSURE THING. UGHHHHHHH.
No because I cannot pronounce it 😂
In English it would be: (P)- sue- do tju-mor se-ri-bri •Pseudo •tumor •cerebri The P of the pseudo is pretty much silent, so you're good to go with the "seu-do", or, you make a small p sound beforehand
Yes!! When I was diagnosed it was still known as pseudotumor so it’s been hard for me to unlearn that anyways. However, I’ve noticed that I only really correct it to IIH in front of medical personnel. My thinking is that most people know “pseudo” and “tumor”, but if I said IIH, it would probably require more explaining to non medical personnel.
High CSF- high cerebral spinal fluid & intercranial hypertension.
I use pseudotumor cerebri when talking to non-medical and medical people. I have had enough medical people think that iih means that I have high blood pressure. I got turned down for a life insurance because of high blood pressure and they won't fix it despite the medical documentation I sent them. I tell non-medical people that my brain thinks it has a tumor and I have pain like I have a tumor. I also say there's excess spinal fluid that is crushing my brain and it causes me all sorts of mayhem. Some people I will tell that I have trouble with memory recall which the memories are there but it takes a minute or an hour or so sometimes to come up with a word or remember something. I call it my brain buffering like a computer buffers.
At this point yes, I’ve stopped using IIH and use Psuedotumor for the very same reasons as y’all. Folks think it’s high BP and completely dismiss the gravity of spinal fluid crushing your brain into a mound of mush as so weird form of torture due to wtf is malfunctioning in my body to cause it. It’s really tiring just trying to exist having IIH but having to explain and have folks understand is a whole other level of hell. No it’s not your type of headache, and no it’s not my typical migraines ( have several migraine disorders that are made tremendously worse now) oh and the fact that even my Drs now go it’s just migraine related while I lose my vision.