I have a friend who is concerned they might have pseudotumor cerebri, except when they told me about it they called it “idiopathic intracranial hypertension,” and that’s how I learned it has a new name! I suffered from this in 2010 and 2011 (and it possibly actually started all the way back in 2007; it’s unclear due to heart medication side effects) and it’s the ultimate reason I got weight loss surgery.
In looking back on my posts on this subject, I discovered that there seem to be a lot of gaps. I didn’t write about the diagnosis at all, as far as I can tell. Blog posts for September, October, and November 2010, the months when I first noticed the problem and started seeing doctors about it, are extremely sparse. So I went back through my oldest Twitter account and my exported posts from my now-deleted Facebook account and pulled together some statuses about my eye. I figured I’d archive them here for my (and my biographers’) convenience. You can check out the pseudotumor cerebi tag for more context.
Heather Meadows
@alirendara
Dec 20, 2007
There seems to be a blurriness in my left eye. I’m not sure if it’s the same as the weird glassy sensation before a migraine though.
Heather Meadows
@alirendara
Sep 28, 2010
In a waiting room. In danger of falling asleep
Heather Meadows
@alirendara
Sep 28, 2010
Sitting in a waiting room as my eyes dilate. Whee
Heather Meadows
@alirendara
Sep 28, 2010
My eyes are dilated and blurry from the exam…I can’t see a damn thing lol
Heather Meadows
@alirendara
Sep 28, 2010
Have pressure at the back of my eye. Going to do more tests. Coups be causes by medicine. Untreated can cause blindness. Sigh
Heather Meadows
@alirendara
Sep 28, 2010
I can’t see to proofreader my tweets so I hope they’re coming out okay.
Heather Meadows
@alirendara
Sep 28, 2010
Bur yeah, just call me Heather Medical Problems Meadows
Heather Meadows
@alirendara
Sep 28, 2010
The eye doctor dictated a letter to my doctor in front of me…it was kind of funny.
Heather Meadows
@alirendara
Sep 28, 2010
“New paragraph thank you for the opportunity to consult sincerely.”
Heather Meadows
@alirendara
Sep 28, 2010
Really hate not being able to read
Heather Meadows
@alirendara
Sep 28, 2010
I’ve discovered I can sort of read if I don’t use my glasses. For some reason they and the tests have caused close-up blurriness
Heather Meadows
@alirendara
Sep 28, 2010
Home. Should have taken the day off to begin with. Everything’s a blur.
Heather Meadows
@alirendara
Sep 28, 2010
And I mean that literally. My eyes will hopefully recover this evening from the barrage of tests… :>
Heather Meadows
@alirendara
Sep 28, 2010
Trying to figure out what to do with myself. So much of my entertainment is based on being able to, you know, see.
Heather Meadows
@alirendara
Sep 28, 2010
Eyes are still majorly dilated, but some of the blurriness has subsided.
Heather Meadows
@alirendara
Sep 29, 2010
@Qamarlaa We’re not sure. My vision goes white in my left eye occasionally. The doctor says there is pressure on the retina.
Heather Meadows
@alirendara
Sep 29, 2010
@Qamarlaa It could have been caused by medicine. We don’t know for sure. But if we don’t treat it, I could go blind! :(
Heather Meadows
@alirendara
Sep 29, 2010
If you needed any more proof that I’m a total nerd, I just told the assistant news director, “I’d rather not lose my stereoscopic vision.”
Heather Meadows
@alirendara
Sep 29, 2010
@Qamarlaa I will see a specialist on Tuesday and find out what I need to do then. Hoping it’s just medicine and not surgery!
Heather Meadows
@alirendara
Sep 29, 2010
Not going to really make an “announcement” about my eye until I see the specialist Tuesday. Need more info.
Heather Meadows
@alirendara
Sep 29, 2010
@Qamarlaa I work on the computer, so I think that’s impossible! But this problem doesn’t seem to be caused by eye strain.
Heather Meadows
@alirendara
Sep 29, 2010
What’s weird about this eye thing is that the right eye, the one that doesn’t have the pressure buildup, has blurry vision.
Heather Meadows
@alirendara
Sep 29, 2010
The left eye, the one that’s affected by pressure and vision loss, has very clear vision (albeit with kind of a cloudy frame).
Heather Meadows
@alirendara
Sep 29, 2010
I guess I could just need a new glasses prescription.
Heather Meadows
@alirendara
Sep 29, 2010
BLAH…finally caved and talked to the health insurance-provided nurse adviser on the phone. Bunch of BS
Heather Meadows
@alirendara
Sep 29, 2010
Half the conversation was about weight loss. She listed all the standard stuff: write down your goals, watch portion sizes.
Heather Meadows
@alirendara
Sep 29, 2010
I don’t buy that anymore. I mean, I know how to eat healthily. It’s actually DOING it that’s the problem.
Heather Meadows
@alirendara
Sep 29, 2010
Blah, I’m too annoyed to explain myself properly.
Heather Meadows
@alirendara
Sep 29, 2010
Bottom line, if setting a goal and thinking about motivations worked for me, it would have worked by now.
Heather Meadows
@alirendara
Sep 29, 2010
I can be motivated to completely change my lifestyle…for about a month. And then I go back to “normal”.
Heather Meadows
@alirendara
Sep 29, 2010
I want to be able to live “normally” and be healthy. :P
Heather Meadows
@alirendara
Sep 29, 2010
I wish cooking healthy dinners was easier than ordering pizza. But it’s not. And when I’ve had a long day I’m going to take the easy way.
Heather Meadows
@alirendara
Sep 29, 2010
I am not one of these superpeople who can write happy self-help blogs. I’m a normal human being. I like food.
Heather Meadows
@alirendara
Sep 29, 2010
It’s not like I’m packing in Krystals every day. I eat at sit-down restaurants and I try different things.
Heather Meadows
@alirendara
Sep 29, 2010
Telling myself that I can’t have something just makes me want it more.
Heather Meadows
@alirendara
Sep 29, 2010
Bah, I’m so pissed off.
Heather Meadows
@alirendara
Sep 29, 2010
See? It’s OBVIOUS that “setting a goal and staying motivated” is not the issue. THERE IS A LARGER CULTURAL ISSUE.
Heather Meadows
@alirendara
Sep 29, 2010
People with amazing success stories are the EXCEPTION, not the rule.
Heather Meadows
@alirendara
Sep 29, 2010
The nurse was polite but I could tell she was frustrated that I was unwilling to buy into the guaranteed-to-fail theory of weight loss.
Heather Meadows
@alirendara
Sep 29, 2010
I’m becoming convinced that the only way I can ever lose weight naturally is to move to a healthier environment.
Heather Meadows
@alirendara
Sep 29, 2010
Someplace where walking is not only possible, but encouraged–part of the culture.
Heather Meadows
@alirendara
Sep 29, 2010
Someplace where the butcher, baker, and vegetable stand are more convenient than fast food.
Heather Meadows
@alirendara
Sep 29, 2010
Someplace where I hardly ever need to drive a car.
Heather Meadows
@alirendara
Sep 29, 2010
The nurse asked how many times I’d been depressed in the past two weeks. None, I said. I should have said “only during this conversation”
Heather Meadows
@alirendara
Sep 29, 2010
The nurse was one of the many people who don’t get the difference between “working hard” and “being miserable”.
Heather Meadows
@alirendara
Sep 29, 2010
I have no objection to working hard. But working hard without enjoying it isn’t sustainable over time.
Heather Meadows
@alirendara
Sep 29, 2010
The people who are successful are the ones who find ways to have fun doing the things they need to do.
Heather Meadows
@alirendara
Sep 29, 2010
I probably wouldn’t be THIS grouchy about the nurse phone call if not for the eye thing.
Heather Meadows
@alirendara
Sep 29, 2010
After that vision field test I’m wondering if my sight in general has deteriorated without me realizing it.
Heather Meadows updated her status.
There’s something wrong with my left eye. I was going to wait to post about it until I had more info, but it’s all I can think about. I was told there is a pressure buildup behind my retina that, if untreated, will lead to blindness. On Tuesday I will find out how bad it is and what the treatment is. Maybe we’ll figure out the cause then too; all I know for now is that it can be caused by many different medicines.
Sep 30, 2010, 4:54 PM
Heather Meadows
@alirendara
Sep 30, 2010
I suppose I should have “thought about my goal” and “stayed motivated”, but instead I ate a bag of M&Ms, a Twix bar, and some cookies.
Heather Meadows
@alirendara
Oct 1, 2010
Replying to @jabry
Carvedilol, generic for coreg. I’m on a tiny dose. I thought it was a side effect of that too, since I had eye side effects before.
Heather Meadows
@alirendara
Oct 1, 2010
Replying to @jabry
But who knows. Will find out more on Tuesday
Heather Meadows
@alirendara
Oct 4, 2010
Off to bed. Eye appointment in the morning.
Heather Meadows
@alirendara
Oct 5, 2010
Slept horribly. Woke up a couple of times due to apparently forgetting to breathe. Laid awake trying to convince myself it was okay to sleep
Heather Meadows
@alirendara
Oct 5, 2010
So, obviously, I’m worried about what I’ll learn today at the eye clinic. How bad is it? Will I have to have surgery?
Heather Meadows
@alirendara
Oct 5, 2010
How much is all this going to cost? My insurance doesn’t cover eye care; will they accept this as medical care?
Heather Meadows
@alirendara
Oct 5, 2010
Will my sight be unobstructed again someday? Will the non-nearsighted-related blurriness in my right eye go away too?
Heather Meadows updated her status.
Heading to the doctor this morning to learn what treatment(s) I’ll need for my left eye. Wish me luck.
Oct 5, 2010, 7:28 AM
Heather Meadows
@alirendara
Oct 5, 2010
Well, they dilated my eyes again. Not sure why I didn’t foresee this.
Heather Meadows
@alirendara
Oct 5, 2010
Had another eye exam and a scan of the optic nerve clusters. They want an MRI but I mentioned my intravenous filter so they’re checking.
Heather Meadows
@alirendara
Oct 5, 2010
Kind of wish the filter could just be removed.
Heather Meadows
@alirendara
Oct 5, 2010
Haven’t heard anything about treatment yet. Guess they’re still investigating.
Heather Meadows
@alirendara
Oct 5, 2010
Radiology says my filter won’t affect the MRI or vice-versa. So we’ll do that to rule out tumor and then look at spinal fluid.
Heather Meadows
@alirendara
Oct 5, 2010
Picked up some of those oh-so-stylish eye clinic sunglasses. Thanks to those and the sun not being fully up, I was able to drive to work.
Heather Meadows
@alirendara
Oct 5, 2010
First thing I did when I logged into my computer was increase the refresh rate on my CRT. WOW was it obvious with dilated eyes.
Heather Meadows
@alirendara
Oct 5, 2010
The MRI will be next Monday. After we have the results from that we’ll see about neurology stuff.
Heather Meadows updated her status.
Need an MRI to confirm the pressure on my optic nerve isn’t being caused by a tumor (doc thinks it isn’t). They’ll check both eyes because the doctor can’t tell from looking whether my right eye has the same problem. Once that’s done, if it’s not a too-mah, we’ll check my spinal fluid pressure by way of an LP. Those are the two most likely causes; there’s a long list of less likely ones that we didn’t get into.
Oct 5, 2010, 10:14 AM
Heather Meadows
@alirendara
Oct 10, 2010
Learned today (anecdotally) that my eye problems could be caused by obesity.
Heather Meadows
@alirendara
Oct 16, 2010
Overly conscious of my left eye lately. Hope to get on track for treatment soon.
Heather Meadows
@alirendara
Oct 17, 2010
I am now kind of looking forward to the LP. Assuming I actually do have pseudotumor cerebri with papilledema, it should help my vision.
Heather Meadows
@alirendara
Oct 17, 2010
(Temporarily.)
Heather Meadows
@alirendara
Oct 17, 2010
And as fate would have it, one treatment for this condition is weight loss surgery. How convenient, as I was planning on doing that anyway.
Heather Meadows
@alirendara
Oct 17, 2010
So here’s hoping we’re right and we can get this taken care of quickly.
Heather Meadows
@alirendara
Oct 18, 2010
I don’t know if my eye is actually worse or if I’m just more aware of it. Regardless, looking forward to a solution.
Heather Meadows
@alirendara
Oct 18, 2010
Thinking of all the problems that weight loss surgery would solve: less strain on my heart and knees, more energy, and the eye thing.
Heather Meadows
@alirendara
Oct 20, 2010
Finally got a real person at the eye clinic. The doc will be in tomorrow and his tech will call me about the LP.
Heather Meadows
@alirendara
Oct 21, 2010
Eye clinic should call me today about the LP. Getting antsy :>
Heather Meadows
@alirendara
Oct 22, 2010
Stopped by the eye clinic and finally got some answers. Apparently they forgot to send out the consult for the LP.
Heather Meadows
@alirendara
Oct 26, 2010
I now have an appointment with a neurologist next week about the eye thing.
Heather Meadows updated her status.
Today is just in the way. I’m eager to get to tomorrow, which is when I’ll meet with a neurologist to talk about the next steps to take for my eye problem. Also, Fringe is back tomorrow night :>
Nov 3, 2010, 1:29 PM
Heather Meadows
@alirendara
Nov 4, 2010
Turns out I’m having the LP today, but they say it takes 30 minutes and I can go right back to work afterwards. :>
Heather Meadows
@alirendara
Nov 4, 2010
In My Day, Spinal Taps Were a Much Bigger Deal
Heather Meadows
@alirendara
Nov 4, 2010
Excited about the LP. If my eyesight improves after today, that will be evidence supporting the intracranial pressure theory.
Heather Meadows
@alirendara
Nov 4, 2010
…they just called to say the LP was “scheduled incorrectly”, so it won’t be today after all. Argh.
Heather Meadows
@alirendara
Nov 4, 2010
They called again and want me to come now! So, off I go.
Heather Meadows
@alirendara
Nov 4, 2010
That was one of the worst experiences of my life. And they didn’t even manage to complete the procedure. Trying again November 22.
Heather Meadows
@alirendara
Nov 4, 2010
I couldn’t stop crying for like half an hour. I think I’m okay now, though.
Heather Meadows
@alirendara
Nov 4, 2010
My back hurts ;P
Heather Meadows
@alirendara
Nov 4, 2010
I really don’t know why they’d say a spinal tap is an outpatient procedure. It’s very uncomfortable to sit.
Heather Meadows
@alirendara
Nov 4, 2010
During the unsuccessful LP, it felt like they were going into my right hip. Surprised to find the bandage perfectly centered on my back.
Heather Meadows
@alirendara
Nov 4, 2010
The lingering pain is to the right of the bandage.
Heather Meadows
@alirendara
Nov 4, 2010
Sean is upset that I let a resident do the LP after he told me not to. I honestly forgot that he said that.
Heather Meadows
@alirendara
Nov 4, 2010
I guess I won’t tell him that she was younger than me, and answered a call on her iPhone while prepping for the procedure.
Heather Meadows
@alirendara
Nov 4, 2010
Though he will probably see that tweet.
Heather Meadows
@alirendara
Nov 4, 2010
I do wish the doctor she called to help her after she couldn’t find the right spot had been the one doing it from the beginning.
Heather Meadows
@alirendara
Nov 4, 2010
I kind of feel like this is how the LP went when I had it before. They tried to do it by touch first, couldn’t, and then did it with X-ray.
Heather Meadows
@alirendara
Nov 4, 2010
But I wouldn’t swear by that. I can’t remember a lot of details from my cancer treatments 12 years ago.
Heather Meadows
@alirendara
Nov 4, 2010
I guess I need to find some good system of taking medical notes, so I know what to do and say and ask.
Heather Meadows
@alirendara
Nov 5, 2010
Too bad I don’t have a deep comfy couch to sit in at work. Office chairs don’t seem to be doing it for me right now.
Heather Meadows
@alirendara
Nov 5, 2010
I’d take another day off, but I only have one sick day left and I need that for when I have the X-ray-aided LP ;P
Heather Meadows
@alirendara
Nov 5, 2010
Trying to drink a lot of water today. Also took a pain pill, which is really helping.
Heather Meadows
@alirendara
Nov 21, 2010
Time for sleep. Gotta get up early to have a needle shoved into my spine. Yippee!
Heather Meadows
@alirendara
Nov 22, 2010
Didn’t sleep very well.
Heather Meadows
@alirendara
Nov 22, 2010
Wow…that was so much better. Virtually no pain. On bed rest for the next two hours, then home.
Heather Meadows
@alirendara
Nov 22, 2010
They drained some spinal fluid and got the pressure down from 29 to about 15. Normal is 10! :P
Heather Meadows
@alirendara
Nov 22, 2010
Will see the neuroophthalmologist next week to talk treatment. The doc who did the LP said they usually treat with medicine first.
Heather Meadows
@alirendara
Nov 22, 2010
When I got up I had the normal vision clouding thing, only not nearly as intense. It’s just a large spot rather than the whole eye.
Heather Meadows
@alirendara
Nov 22, 2010
When Mom and I were talking she mentioned that the person we know of who had this was treated at first with a diuretic.
Heather Meadows
@alirendara
Nov 22, 2010
So it’s possible that I already had this problem when I was on spiranolactone, and it was canceling it out.
Heather Meadows
@alirendara
Nov 22, 2010
Of course, medication isn’t a permanent solution, more like a continual bandaid. Looking forward to talking with the doctor.
Heather Meadows
@alirendara
Nov 22, 2010
The person whose case we know of was “cured” by weight loss surgery. So if the doc doesn’t bring that option up, I will.
Heather Meadows
@alirendara
Nov 22, 2010
Wow, I think this is the worst headache I’ve ever had in my life.
Heather Meadows
@alirendara
Nov 23, 2010
Took Sean to drop his car off at the detailing place, then came to work. Slightly sore in my lower back and have a small headache.
Heather Meadows
@alirendara
Nov 23, 2010
Neurology called me to ask how I’m doing. They were surprised to hear I came to work today. Okay, okay, I get it :>
Heather Meadows
@alirendara
Nov 23, 2010
Everyone was like “don’t go to work!” Honestly, I think I came to work because I was afraid I’d be bored at home
Heather Meadows
@alirendara
Nov 23, 2010
If I’m being totally honest…I did start getting the headache again at lunch. But I took a pain pill and it’s gone now.
Heather Meadows
@alirendara
Nov 23, 2010
So maybe I’ll go straight to bed when I get home.
Heather Meadows
@alirendara
Nov 23, 2010
Okay…I’m going home :P
Heather Meadows
@alirendara
Nov 23, 2010
I came home from work and went right to bed. Wow, what a difference. I probably shouldn’t have tried to go to work today.
Heather Meadows
@alirendara
Nov 23, 2010
Headache keeps coming back; only thing that makes it subside is lying flat. If still like this tomorrow I’ll call the doctor.
Heather Meadows
@alirendara
Nov 24, 2010
Slept well. Yesterday taught me a painful lesson, so I’m staying home today. Hope I’m recovered by tomorrow.
Heather Meadows
@alirendara
Nov 24, 2010
Spending a lot of time lying down and drinking water. When I get up to refill my glass or go to the restroom, I can feel a dull ache.
Heather Meadows
@alirendara
Nov 24, 2010
I refuse to let the headache get as bad as it did yesterday though. That was awful. (Though not quite as bad as the first night.)
Heather Meadows
@alirendara
Nov 24, 2010
Replying to @StacieWells
@augustagaliving Hopefully it’ll be gone by tomorrow…recovery from a spinal tap shouldn’t be taken lightly though! (Note to self ;P)
Heather Meadows
@alirendara
Nov 24, 2010
It’s confirmed; this is what I have (what we expected): https://health.google.com/health/ref/Pseudotumor+cerebri
Heather Meadows
@alirendara
Nov 24, 2010
Rode with Sean to Baldino’s…now lying down again. Don’t think I’ll be driving to Kentucky tomorrow :(
Heather Meadows
@alirendara
Nov 25, 2010
Trying to pretend the headache’s gone…it isn’t working.
Heather Meadows
@alirendara
Nov 25, 2010
My new medication is a diuretic primarily for staving off high altitude sickness/nausea, but one of the side effects is “stomach upset”. :>
Heather Meadows
@alirendara
Nov 25, 2010
It’s also used to keep pressure from building up in the eye, which is of course why I’m taking it.
Heather Meadows
@alirendara
Mar 14, 2011
I may need a new glasses prescription, but my vision might have also been damaged by the pseudotumor cerebri.
Heather Meadows
@alirendara
Nov 10, 2011
Lady in the eye doctor’s waiting room doesn’t seem to know she can mute the sounds on her iPhone.
Heather Meadows
@alirendara
Feb 10, 2012
I’d like to know if my pseudotumor cerebri has improved at all with weight loss.