Benign Intracranial Hypertension

Join the Conversation on
Benign Intracranial Hypertension
386 people
0 stories
10 posts
  • About Benign Intracranial Hypertension
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Benign Intracranial Hypertension
    Community Voices
    Community Voices
    Community Voices

    First Neurophthalmologist appointment next week... any advice?

    So I have my first appointment with a neuropthemolegist (still can’t spell sorry) next Thursday and I’m not sure what to expect. I’m quite nervous and would love to hear about other’s experiences to quell some of my anxiety. The one thing I have heard about this particular doctor is that she is very thorough and the appointment will probably take like 3 hours so... any advice is greatly appreciated!
    #IIH #iihwarrior #IdiopathicIntracranialHypertension #BenignIntracranialHypertension #PseudotumorCerebri #IntercranialHypertension #doctorsappointment #Advice #AdviceWelcome

    1 person is talking about this
    Community Voices

    My newfound superpower

    “If you could have any superpower what would it be?” Answers to this question usually include things like flying, invisibility, mind reading, or x-ray vision. The definition of a superpower basically says that it is an imaginary superhuman power. I think that it’s time to change the meaning, or at least be able to apply it to everyday people and their everyday abilities. There are super humans all around us that don’t get the recognition: black women, women that don’t experience uterine cramps, people that “just don’t like ice cream,” or people out there working and grocery shopping with one kidney or one lung. 16 days ago I found out that my body creates way too much spinal fluid and I have decided that this is my superpower.

    I used to get migraines when I was a teenager. They were hormonal and would usually show up right before a period and take me out for a day or two. My mom and sisters got them too. I stopped getting them sometime in my twenties and I think I have only had a handful of them since then. I am now the sexy age of 39, and about eight weeks ago I started getting recurring and consistent headaches, but I didn’t want to call them migraines because they presented differently. Instead of being one sided with that pulsating/throbbing feeling and light sensitivity, they were more generalized. My whole head hurt and would worsen through the day. I had nausea too, so it made me think it was something else. Everyone kept joking that I was pregnant. I kept saying that was impossible because I have had the Mirena IUD in for a few years now. I take medication for acid reflux and have had the meds stop working and end up with headaches and nausea, so I decided to self treat and change my meds. It seemed to help and I went on with my life. Then the headaches returned. I had a #Headache for seven days in a row before I went to see my primary doctor.

    I am a nurse. Sometimes it takes our friends to pester us to go to the doctor. In this situation it happened to be my boss, Brenda. I had just submitted my resignation, was in my final days of work, and was suffering the headaches. I tried working through them; I would leave early after wearing sunglasses at my desk and cringing through every conversation because my head throbbed with each word that came out of my mouth. She asked a few times why I didn’t go to the doctor and then it turned into, “when are you seeing your doctor?” I went to the doctor on a Friday. (Brenda’s superpower is making people go to the doctor.)

    My primary doctor is pretty rad. I even told him once that he was great for two reasons: he listens to me and he does not fat shame. He started laughing and asked what I meant. I explained what fat shaming was in the medical world and how so many of my friends or people I have interacted with online have horror stories of doctors fat shaming (think of going to the doctor with pneumonia and being told you have to lose weight before they even listen to your lungs or read this story about a woman that recently died from #Cancer and her dying wish is that women advocate for their health and refuse to accept that fat is their only health problem). He was horrified and said he was sorry that anyone experienced that. Anyway, he was unavailable, but I got to see another doctor in his office that I also adore. She is so great that at one point I tried to transfer my care to her – she is every damn thing you want in a doctor: kind, thorough, available, and relatable. Also a woman – hello! She examined me and tried to get a good look at my eyes. She asked if it worsened when I leaned over and I said that yes, I had just dropped something on the way in and when I bent over to pick it up, I thought my brain was going to fall out of my skull. She suggested treating it like a #Migraine, even though it was not presenting that way, and that it was very important that I follow up with an eye doctor. She had concerns about benign tumors behind my eyes, at least that is what I thought that I had heard. She gave me Imitrex, a popular migraine drug, and told me to take one a day for three days. She said to call her after I saw the eye doctor.

    I tried to get into the eye doctor right after leaving her office, but they could not fit me in for a week. I took an appointment for the following Friday. In the meantime, I followed the instructions with the Imitrex and the headache went away. I was feeling good again. I made it through the weekend, worked my last few days and was looking forward to having time off with my boyfriend before starting my new job. We had a trip planned up in wine country and had rented a house with a pool and a hot tub and just wanted to do nothing. So we were going to run errands, get ready for the trip, and go to the eye doctor before our vacation.

    I knew that they were going to dilate my eyes, so he drove me to the appointment. I was hoping it would be quick and we could grab some lunch afterward. The doctor was nice and started the vision test. I don’t remember at what point during the exam this happened, but he said that I had to go to the emergency room after he did a few more tests. He said that he saw bilateral papilledema (swelling of the optic nerves in both eyes). He said it was mild, that all of my vision tests were totally fine, but based on my headaches and this, I had to go get a brain scan and possibly a lumbar puncture.

    Do you know what a lumbar puncture (LP) is? It is a spinal tap. Do you know what a spinal tap is? It is when a medical professional sticks a needle in the lower part of your spine to collect some of your cerebrospinal fluid. I was NOT PUMPED to have this happen especially because I had been a part of these procedures before as a nurse and the patients either scream or cry during it and then feel extremely ill with the “worst headache ever” for days.

    We went to the UCLA Ronald Reagan ER with some pictures of my eyeballs.

    I saw a lot of residents, a few interns, a few doctors, and some nurses. We were there for 11 hours. I got a CT of my brain to rule out an actual tumor (which can cause papilledema) and then was told I had to have the LP. I told the resident that 1) I was terrified because of my experience as a nurse 2) I did not want one at all, and when he assured me that he had done plenty, I asked 3) have you performed them on fat patients, though? See, the tricky thing about doing them is that sometimes it is very difficult to find the right spot. And the risk for injuries are pretty lengthy including brain herniation and hemorrhaging. He did not answer my question, but sorta laughed it off. I inquired about having it done by Interventional Radiology (IR), which everyone that has had them say it is so much better when done in IR. They use a scanner to guide them to ensure the needle goes to the right space on the first try. He said due to time constraints it would be best for him to try. I asked for anti-#Anxiety medicine and he obliged.

    I was asked to put on a gown and the nurse that brought it to me was lovely. I do not know where he went to get it, but it actually fit. I commented on that and he laughed and said, “girl, it’s an extra small!” (Roxane Gay recently talked about her experience at UCLA while getting weight loss surgery and the gown did not fit, maybe her story caused them to buy some other sizes?) They set everything up and I was asked to lie on my side. He was looking at my back and said to hold on, that he was going to have someone else take a look to confirm placement. The woman, who I did not see, but assume was the attending, came in and laughed after looking and said, “no.” She left and he asked me to sit up and told me that he could not do it (yay) and that we would have to schedule an appointment with IR (boo). I said, “aren’t they here now?” and he ran to check. He came back and said nobody was in to perform it, but they paged someone who was on their way.

    The IR LP went well. It took about 20 minutes for them to prep everything while I laid face-down on a table under the scanner, and the procedure itself was maybe 5 minutes. The LP itself is best described as weird. I just felt the initial poke for the anesthetic and then it was like someone was rooting around inside. The doctor was lovely and from Canada. He was shocked that I recognized his accent and that usually people in California assumed he was from there. (The guy was all “aboot” and “you’re welcome” so I have no clue how this would ever happen.) He said, “I am taking aboot 8 mL of fluid and your pressure is a little elevated – I am getting 35.”

    QUICK SCIENCE LESSON: Our brain is in our skull which is connected to our spinal cord which is inside the spine. Our brain makes cerebrospinal fluid (CSF) and that is in both the skull and spinal cavity. CSF protects our brain in a bunch of ways, including keeping our brain buoyant so that it can take a hit a little easier, and removing waste from our brain.

    The resident told me that the diagnosis was “#IdiopathicIntracranialHypertension.” They said that I would be given Diamox (medication), to start taking 1000 mg, that weight loss was necessary, and that neurology would contact me on Monday to set up appointments and that they would be increasing the dose of the Diamox. I said that we were going on vacation on Monday – was that okay? He said yes, as long as we were not flying.

    As you can imagine, being a research nurse, I have been using my logins on every medical site to find any piece of information that I can and have found support groups and a research foundation for this diagnosis. Here are some major points:

    Idiopathic intracranial hypertension (IIH) is a disorder and the words literally mean, “we don’t know why but you have high pressure within your skull.”

    It used to be called #PseudotumorCerebri (false tumor) or #BenignIntracranialHypertension. (Patients and the research foundation really dislike the old names because they imply that this is benign or not a big deal.)

    It is rare, but incidence is on the rise.

    Partial or total vision loss is the worst complication.

    Treatment options are very limited and cause a lot of side effects. Some folks end up with a shunt or two.

    The largest study thus far focused on weight and therefore EVERY DAMN LINK will tell you that weight is the culprit and if you lose weight, you will be cured. The support groups will tell you otherwise as they include patients that aren’t overweight at all, patients that were forced to have weight loss surgery now have worsening symptoms and have lost their vision, or patients that did not lose any weight but are in remission. (This being said, some folks report good results with losing weight too – the safe guess is that IT IS ALL A FUCKING GUESSING GAME BECAUSE NOBODY KNOWS ANYTHING).

    There is a pending class action lawsuit against the IUD that is currently in my uterus for this very disease. It is a crap shoot since the thought is that any hormones can cause this, but I signed up.

    The days following the ER visit have been complete torture. Remember that I was feeling totally fine, I had no issues and went in for what I thought was going to be a regular ol’ eye exam and ended up in the ER where MY SPINE WAS ASSAULTED. I actually went back to the ER two days later because I took aspirin unknowingly and because of the major alert warning of potential interaction with the new meds, I was told to come back. I was okay, but had a not so friendly run-in with someone demanding I put on a gown that did not fit. Then I suffered a tiny CSF leak from the LP so I had the worst headache of my life that was totally fine if I laid completely flat, but was so bad the second I moved that I legit thought I was dying and/or wanted to die. We canceled our vacation. I was on bed rest for two days. I started to feel better. Then the side effects of the Diamox kicked in. I am so dizzy it feels like I am constantly spinning, but not visually, just my body. Spinning like on a merry-go-round or riding the waves on a shitty ass boat. This is not any better when I have to run to the bathroom for the diarrhea that it has also #blessed me with, and surely not any better when I try to sit up like a functioning adult and eat something not in a horizontal position.

    I saw a Nurse Practitioner in the neuro department on Friday. She is pretty awful. Her bedside manner can be described as argumentative at best. At one point she told me to calm down and it felt like my eyeballs got as big as my head because I was trying to determine what would happen if I just kicked her and walked out. A doctor knocked on the door and asked to talk to her and while she stepped out my boyfriend calmly asked me, “how do you think this is going?” She basically gave me two options: space the doses apart so instead of taking two doses of 500, take four doses of 250 OR remove one of the 250 doses and see her husband (don’t ask) in ophthalmology right after to ensure I wasn’t causing more harm to my vision. We went with option one and it did nothing and now I am sorta doing option two. Today I took 250 in the morning and haven’t taken anything else because I felt awful.

    Tomorrow I am supposed to start a new job. It begins with a two-day orientation that is all day, sitting in an auditorium, with the exception of a walking tour. Currently I am typing this while laying down because sitting up is near impossible and walking is out of the fucking question. I need the job for money, obviously, but also my insurance with my last job ends on September 1. I am sure that my current provider has paid thousands of dollars so far for just the first week of the diagnosis, and so I need insurance.

    I am nine days into this diagnosis and feel overwhelmed, terrified, depressed, frustrated, and enraged. I have a new superpower and it comes with a ton of drama. Although, I guess flying would have to cause some other drama too – it’s gotta be cold up there and I bet birds fucking hate you. At least I get to lay down a lot and not piss off the feathered ones.

    Benign Intracranial Hypertension: Feelings Caused by Chronic Illness

    For days I’ve tried to title this feeling I’ve had lately. The title of that feeling would be the title of this post. Luckily I found one and decided to leave it untitled. That is the perfect way to describe this feeling I think all of us who endure chronic illness feel: untitled. The feeling of helplessness. The guilt that racks your brain while on yet another Netflix binge instead of being productive.   My least favorite of them all, the exhaustion that never goes away no matter how much rest you get. The embarrassment of begging your doctor to do something, anything to help you. The terror of working your ass off in therapy to get better but fearing you never will. The feeling of not knowing how you feel, just knowing you don’t feel normal. Not remembering what normal is anymore. The weariness of needing to be in bed but not wanting to be in bed. Not being depressed but not being happy either – just somewhere in the middle. And the hardest of them all: yearning to feel anything other than the pain. I hate this feeling. This feeling without a name, without a warning or directions on how to conquer it or explain it. But it comes with the territory. I pray that everyone has something they can do to soothe that feeling. Me, I pray, listen to some music and try to watch or look at things that will force me to laugh. Slowly but surely the feeling will pass, even if only for a little while. My best advice – don’t fight the feeling. Acknowledge it and allow it to pass. This feeling is just a part of enduring. We can all endure through this as well. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via berdsigns.

    Rebekah Byland

    Why Intracranial Hypertension Feels Like an Ocean In My Head

    There is an ocean in my head. The average person may have a lake inside. I imagine it with some nice beachfront property. I’m not saying that lakes are without their own problems. The shore may erode, and the waters can get murky. Storms may even pass through with their ominous black clouds. If you’re unlucky, you might experience something really bad like a waterspout or a whirlpool, but you can weather these storms because you know that soon the bright sunny days will return and you can go back to relaxing on the beach. There is no beach in my head, no matter how often I search for it. There is no horizon in all directions, there is no promise of land or hope for calm waters after the storm. Because I am lost at sea, adrift in my own head. When I stand the waves crash against my skull, the pain brings me to my knees. The tide calls the waves back and forth in steady rhythm until the sound of their breaking drowns out all else and I am left with the beating pulse of the ocean thrumming eternally in my ears. The sea foam splashes in my face, my eyes play tricks on me. My stomach churns from the constant sea sickness. My brain tries its best to navigate these torrential waters. When the pressure of the waves threatens to pull us down into a watery grave my brain casts unnecessary weight overboard. Usually it throws out barrels of memories without discretion. If I’m lucky after the storm has died down a little we can go back and still find some of these memories afloat, but some of them have sunk to the depths, never to be seen again. Sometimes my brain grows weary with the constant fight. It stands pale and gray at the helm too exhausted to manage a single thought. Listlessly it steers us without any awareness of the dangers around us. My brain cannot sleep, it must be vigilant at all times or else we might drown. As quickly as it pumps out water more leaks into the boat. If my brain were to rest we might get behind on bailing out the boat and might never wake again. And this is just an average day with the sea in my head, but there is even more to contend with than waves and water. Storms, massive tempests, come with little warning. The sea turns violent and black, massive waves far larger than my brain’s tiny ship, roll from the deep, their frothy tips striking downwards like spears against my deck. The sky becomes so black I forget even what my usual gray skies look like, and I yearn for the fog that was plaguing me just moments ago. Lighting, white-hot, sears across my skull. It strikes through my eyes, it travels down my spine until every limb has burst into fire. There is no room for thought. My brain is taken up with the sole action of navigating me through this storm. We ride the tsunamis, fear and weightlessness clenched in our gut, and only hope that we will live to see tomorrow. The only thought is survive or die. The wind whistles through my ears, drowning out my cries as I beg for mercy, my body crumples into a heap as another lightning strike drives me to the floor. I once tried to ask an expert navigator for help weathering my storms. “The ocean’s been here for years.” I explain. “But the storms just keep getting worse, can you help me?” What I got from the doctor was a drivel of excuse. “It’s all in your head. There’s no way there’s an ocean in there, everyone just has a lake, stop being so dramatic. The condition is benign isn’t it? Just lose a little weight and I’m sure all will be fine.” All will be fine? There is an ocean in my head. Can’t you see the saltwater pouring from my eyes? Can’t you hear the waves and the wind through my ears? The weight was never the cause, it’s a symptom because while your brain is catching rays at the beach mine has been fighting these gales year after year untold. I don’t have energy to spare to fight other battles, I’m spending every day just trying to stay afloat. The navigator snapped back at me. “What do you want me to do? Should I put a faucet in your head to drain this sea? Should I put a tap in your spine like a maple tree and see what comes out? Do you want pills to calm the waves but bring the fog? Do you want to lose the lightning but get more sea sickness? Tell me, do you want any of this?” I grow silent. I don’t want this, trading a worst for a bad when all I beg for is just one good day. What I want to do is take two steps off of the plank and end the mad sea, but my crew keeps pulling me back from the edge. My crew anchors me; without their help on deck I wouldn’t be able to focus on fighting the rough seas before me. I don’t know what tomorrow brings. I’ve given up hoping on tomorrows because the ocean in my head is relentless and can change without notice. I can’t plan for the future, tomorrow, next year or the years after. Too much could happen. I could get dashed against the hidden reefs at any moment. I could capsize and drown in the blink of the eye. The only thing I focus on is the squall that is around me right now, and hoping that at the rise of this next wave I might see even a glimpse of land. So today, like all days before, I somehow pull myself up and make it out on deck. The sea sprays all around, filling my vision. We just dumped a load full of memories but I can’t go back now, this fog is too dense. Again I place my hands upon the worn wheel of this ship tossed mercilessly about like Poseidon’s plaything. I grip the wheel tightly because even if the helm is not responding I must keep looking forward to the horizon. Because today, like all days, even if I cannot control the raging of this sea, I am still the captain of my own ship. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images