Today is Rare Disease Day, an international day of observance and awareness raising event for rare diseases. While there are over 6000 existing rare conditions, I live with one of them. Idiopathic Intracranial Hypertension (IIH), also known as pseudotumor cerebri affects 1 in 100,000 people globally. As with other rare diseases, lack of scientific knowledge and quality information results in a delay in diagnosis, and treatment is often a guessing game.
Everyone can understand and sympathize with the seriousness of a brain tumor. However, many people can’t understand or sympathize with IIH, in which your body and brain reacts as if you have a brain tumor. Instead of a tumor, there is an excess of cerebral spinal fluid in the head which puts pressure on the brain and backs up into the optic nerves.
IIH can cause a variety of symptoms and issues including:
- Vision disturbances
- Seizures
- Memory loss
- Gait issues
- Cognitive function loss
- Nausea
- Extreme pain
- Tremors
- Complete blindness
- Cerebral spinal fluid leakage from ears and nose
- and more
Although women are more consistently diagnosed with Intracranial Hypertension, men can be affected as well. Women are often diagnosed and put into a box, with doctors blaming weight or diet when the true underlying cause of Intercranial Hypertension remains unknown, hence the ‘idiopathic’ part of IIH. Unlike suffering from a physical brain tumor people with IIH don’t have advocacy or support. There are no awareness walks or well funded studies for a cure. In fact, there is no cure for Idiopathic Intracranial Hypertension. You can manage the diagnosis with a variety of medications, none of which are specifically formulated for this disease. You can try to lose weight, to avoid being fat shamed by your physician. You can travel to see neurologists and specialists; but there is not any one regimen for successful treatment. If you happen to respond well to a special blend of medication and there is no presence of head pain or optic nerve swelling you can go into remission, just like cancer. However, there is never a point in time which you can be declared cured – and it will always rear its head again.
People who are severely affected by IIH often undergo surgeries. Stents to open up the arteries in an attempt to get the spinal fluid to drain more easily can be attempted. Often patients undergo shunt surgery, where tubing is snaked from head to abdomen to have the cerebral spinal fluid drain more freely. However, these surgeries are not cures. Oftentimes, they aren’t even effective – with a 40% failure rate. Many people I know that suffer from IIH have brain surgery an average of once a year and they still suffer debilitating head pain.
Living with IIH can be crippling. Depending on the severity, a person with IIH can experience daily headaches or migraines. Bending over, sneezing, coughing, or sitting up suddenly in bed can cause sharp sudden pain – even to the point of vomiting or blacking out. It is not uncommon for vision to get fuzzy, or see “floaters” or have a decreased line of sight. Sometimes, spinal taps can temporarily relieve high pressure and alleviate symptoms, but cerebral spinal fluid replenishes in 24 hours.
How rare is Idiopathic Intercranial Hypertension?
- It is 8 times more common to be diagnosed with a malignant brain tumor, than it is to be diagnosed with IIH
- It is 6 times more common to die from a brain tumor, than it is to be diagnosed with IIH
I have headaches on a daily basis. A headache to me is defined as being a 3 or under on the pain scale, assuming 1 is little to no pain, and a 10 is the worst pain imaginable. Anything above a 3 I describe as a migraine, although technically my pain is not a real migraine it’s just due to a buildup of cerebral spinal fluid. One of the worst parts of having IIH is the fact that it is an invisible illness. Unlike with cancer – which people can easily understand the severity of and grasp – there is no outwardly visible signs of the symptoms of IIH. This leads to regular questioning from people who simply don’t understand. “But you don’t look sick.” “What’s wrong with you? I can’t see anything” or “Oh, I had a headache yesterday. Here, take some Excedrin, it helps me.” “Why are you so tired all the time? Admit it, aren’t you just a little lazy?”
Imagine waking up with a headache. Working with a headache. Becoming increasingly sound and perhaps light sensitive. Going to sleep with a headache – and then waking up with that same headache, day in and day out. Most people after experiencing a day’s worth of head pain get cranky, irritable, and tired. Some people may take day off of work to recuperate, or increase their caffeine intake and take some over the counter medication to lessen the pain and continue on with their routine.
People with IIH can’t find relief in medications or caffeine – or if we do, its temporary. Typically, there is no relief from that headache. I’ve had a headache every day for 3 years. A good day to me, is when my headache is low level enough to be able to function “normally”, or at least within my modified range of normal. I can drive, I can run errands, I can complete work. When the pressure – and pain – increases, it starts to go downhill. I’m a lucky case – I’ve successfully avoided brain surgery so far, and have found a mixture of things that help relieve my pressure and keep things manageable. I haven’t lost my sight, and I don’t leak cerebral spinal fluid. I’m one of the lucky ones.
The unsettling thing is, at any point in time this could change for me. My condition could get worse and I could be forced to increase my medication, increase my doctors visits, undergo brain surgery, or have regular spinal taps to relieve the pressure. There is never a guarantee of maintaining my current state despite my best efforts. I look at those I know who suffer with IIH, who are shaving their heads in preparation for brain surgery #9, or who are in the hospital having their shunts revised, a bolt stuck into their head to monitor their pressure. Those I know who can’t work, but struggle to apply for and be given disability because “they don’t look sick,” or because “headaches aren’t enough of an excuse.” I have acquaintances who are steadily losing their vision, or are watching their children or spouses suffer through this diagnosis and are helpless to change the outcome.
Living with Chronic Pain
Just like any other permanent rare disease, Idiopathic Intracranial Hypertension changes the course of your life forever. You have to weigh out the number of activities you can participate in, and struggle to find the balance between pain management and happiness. Normal people can’t begin to understand the number of choices people with chronic pain make every single day.
- If I wash the dishes, will I have enough energy to make the bed?
- I feel good, my pain level is manageable – can I walk the dog, or do I risk overdoing it and causing my pain to increase?
- On a bad day, do I miserably stay in bed, or do I try to go to work, and just suffer through it?
- Should I eat healthier and make dinner tonight, or should I reserve my energy and order out?
- The floors need to be mopped, but can I do that without bending over, which causes dizziness and increased head pain?
Chronic pain causes you to continually adjust your life to maintain an acceptable level of pain. As sad as that sounds, its true. Those of us with chronic pain have determined what is considered an acceptable level of pain, and a good day typically means that your pain level is below what you consider acceptable. An excellent day may mean a day with little – perhaps even temporarily no – pain. Excellent days may cause us to take advantage of it and overdo our activities, which we then pay for with increased pain later. It’s a delicate balance that you can only learn through trial and error.
If you are interested in learning more about my rare disease, I recommend visiting the following website:
The Intracranial Hypertension Research Foundation, the world’s only not for profit devoted to supporting the research of chronic Intercranial Hypertension: http://ihrfoundation.org.
Do you or someone you know suffer from intracranial hypertension? Reach out to me – I enjoy meeting fellow IIHers!
74 Comments
It was very interesting to learn more about this. I can’t imagine having headaches daily – that sounds so rough. Thanks for bringing this disease to my attention since I hadn’t heard of it before.
Thanks for being willing to learn and read about it!
Thank you so much for your post currently have had IIH since 2009 & go into remission unusually once a year. I’ve had several surgeries & over 300 spinal tap I am almost scared to go to the Dr. I ended up with Chiari in 2014 due to lp shunt over drawing fluid & was in a nursing home. So I am currently disabled home on my couch hurting as you mentioned. I pray we all get better & theirs a cure. Thank you Shelly
I rarely get headaches but when I do I always think of people who live which chronic headaches. I was drawn to your blog because I enjoy medical info, but Isaiah 33:24 is what comforts me, especially when I see illnesses with no cure or real treatment. I can only imagine the frustration.
It is very frustrating. Thanks so much for taking the time to read this rather wordy article. I really appreciate it
Hi very interesting. I am a fellow IIH sufferer with a shunt. Would love to hear from you.
Nice to meet you Sharonne!
Your article really hit home for me in every way. You have taken the words I have always tried to say and explain to others and shared it for the world to see. Thank you very much for sharing your storty and spreading awareness for this very rare and under reasearched disease.
I also suffer from IIH. I have been diagnosed for over 2 years now, suffering for longer.
I am also so far a lucky one with no brain surgery yet. But medication still is not fully working, resulting in a miserable life suffering from this horrible disease.
Once again, thank you so much for sharing.
Kari Catleugh
Thanks so much for your comment Kari. I’m so sorry your medication isn’t working fully. I really wish they could find some way to treat the pain!
I am a one these unlucky people to have “IIH”. I was diagnosed with the condition over 20 years ago. I have a “VP” shunt in place, which has had to be revised 6 times. I live in an area that most Dr.’s don’t know anything about my condition. I am in constant pain, daily. I know all to well, the “so you have a headache, that does’t mean you cannot do this or that. Just take some pain meds. ” Even with my shunt, I have to have several spinal taps every year. I am lucky, that after 20 years, I have not lost my sight. I cannot work, and have my 6 year old grandson to support and cannot get disability. I recently lost medicaid due to the fact that I do not have court issued guardianship, which I cannot afford to get a lawyer to do. So since I do not have medicaid, I have to pay for everything out of my pocket.
But that is life with “IIH” you live in pain and struggle from day to day and most of us do it without that many people realizing how difficult it is to even get out of bed some days.
My favorite line to my friends when they complain about a headache or migrain is, “I would love to have a migrain, then at least you know at some point the pain would let up and go away.
I have never heard of this disease before but now that I took the time to read this article I am very pleased with the information that has been put out. It is a very helpful to me because it explains in detail what these people that are diagnosed with this disease are going through on a daily basis. I hope with all this information that people will become more aware of others pain/depression. Thank you very much!!
We hope for awareness too! Thanks so much for taking the time to read and get informed.
Well done and spot on. Thank you for being my voice xxx
Thanks for the kind words. I really appreciate it
Thank you from a fellow IIHer. You have said in this post what all us who suffer feel. Thank you, thank you, thank you!!!
Thank you! I appreciate your kind words
It’s nice to read my own voice coming back at me. And to be reminded I’m not alone. I’m currently in bed with my bad head – wearing earplugs to block sound and sunglasses to dim light.
Medication and weight loss have helped me, I’m lucky, but never “ok”.
I have headaches every day . I have never been diagnosed with this, but I have several spinal issues. Chronic pain is miserable. On days that I am not forced to function , I stay in bed. Every fiber of my body hurts.. I wish we could all be pain free
I wish we could all be pain free as well! Gentle hugs to you
Thank you so much I feel like you best described what we go through. No one understands us but us!
I don’t believe any neurologist intends to “fat shame” us by recommending weight loss to combat the symptoms of IIH. I lost 15% of my body weight, and I’ve weaned off the medicines and am now in what they consider remission. It took two neuros telling me to lose weight before I listened, and I’m glad I did. They don’t have ulterior motives; they really want to see us get better. Weight loss doesn’t fix this for everyone, but it’s worth a shot for all of us. 🙂
I don’t believe they all intend to fat shame, but I know a number of patients who have been, in some cases when they weren’t even overweight or obese to begin with.
It is a fine line. I was recently diagnosed with IIH and while my neuro-opthamalogist told me my weight wasn’t an issue, he still recommended losing some weight. To give you an idea, I am 5 foot 7 and 150 pounds. I am also very athletic and weight lift, so most of my weight is muscle. It is no small thing to be told to lose weight when you don’t have very much weight to lose. In addition to all of this , I feel helpless to be proactive about my condition as I don’t present with most symptoms. I don’t have headaches, don’t hear my pulse in my ears, don’t fatigue, no nausea, no double vision. The only symptom I had was blacking out in just my left eye and papilledema in just my left eye. Even my opening pressure from a spinal tap was barely over the normal range. I also barely fit into the age range typically associated with IIH as I am 18. I have never had an infection or head trauma either. It is so important to put conditions like IIH on people’s radar, because something that can make me go blind before I finish college should at least have doctors and people who understand it.
I wasn’t diagnosed until after I lost 70lbs from weight loss surgery. It’s gotten worse the more lose. This disease is very complex and mysterious at the same time…
Yes it is! You are not the first I’ve heard say that symptoms got worse after weight loss
I was diagnosed with IIH 4 years ago, I knew there was something not quite right beforehand, I went for an eye test and the guy flipped out, my optic discs were completely blown out. His panic frightened me, I went straight to my doctor and I was sent for ct scans, luckily nothing showed up but I collapsed and ended up in hospital. MRI’s and lumbar punctures soon revealed IIH, optic neuritis and MS. My life has completely changed from the strong independent woman I was to becoming dependant, I couldn’t drive and the pressure in my head was making me so ill. I do have a large white spot deep in the centre of my brain which is being kept an eye on. I have told my neurologist I have a leak but they didn’t take me seriously and yes I have been placed in that box and fat shamed, not very nice but what do you do, your relying on these people to help you. I just do my best to get through everyday and keep praying it will all settle down. Thank you for this post, it shines a light on what I’m going through as are many other people.
Your story reminds me of my own! I went in for an eye exam thinking my headaches were due to a prescription change with my glasses and I was long overdue for a checkup. My optician saw my swollen optic nerves and immediately sent me to a referral for both field of vision tests and to get a secondary referral for a spinal tap, telling me I most likely had IIH. It’s a scary way to learn something is seriously wrong with you! Thanks so much for sharing your story.
Im actually living and caring for my ex and son as she has been diagnosed with IIH..Same thing..all hospitals and doctors told her to take headache tablets..so she had eyes tested incase it was her glasses causing this…Optometrist took her phone took photos of scans and said go staright to hospital..upon arrival we were told WHOS AN OPTOMETRIST TO TELL YOU SOMETHINGS WRONG..HES NOT A DOCTOR GO HOME..We didnt leave and after being sent feom hospital to hospital we found a doctor who cared..She was instantly rushed in for shunt and lumba puncture…
I feel for anyone with this nasty disease..We are in Australia and im about to start a charity to raise funds for studies into IIH..Im hoping to get the new womens Australian football league involved…Fingers crossed and God bless you all
Please keep us posted on your fundraising efforts!
I have had symptoms for so long I can’t remember when they first started. Just before Christmas I became extremely sick and with a constant headache (what I thought was a migraine at the time) for 5 weeks. I too went for a routine eye test thinking I needed to update my prescription. I had my 12 year old with me and whilst the optometrist impressed upon me the urgency to go see my GP and an opthamologist asap she was very sensitive to the fact my son was there. I could sense she wanted to say more but held back and just wished me the best of luck. After many tests I too have been diagnosed with iih and have a follow up appointment soon with my neurologist for some of the test results I haven’t yet seen. Your story sounds so similar to mine and whilst this is a horrible disease it’s nice to know we are not alone and that others understand what we are going through. Thank you for sharing and bringing some comfort to fellow sufferers.
I am thankfully one of the lucky ones, diagnosed in 2013 after vision disturbances. I had ignored the wooshing, and the headaches for yrs thinking it was just unlucky UN healthy me until my vision changed.
At the time I was in ER to have spinal tap that the Neurologist insisted I have an MRI where they then found MS lesions and a meningioma. 3 illness at once..
After the first 20 attempts by a registra in the ER. ( without pain relief ) to get a needle through to my spinal cavity unsuccessfully, I was carted off to have it done under fluroscopy, 3 more attempts until success. Because of some small amount of nerve damage and the need for further tests I was admitted for a week.
All up I’ve had 28 spinal taps. But have been managed well with Diamox, high amounts at first then eventually low amounts. I am almost at remission, but I do worry about it coming back at full force again!
My MS is now maintained due to monthly infusions and have no further lesions appearing whilst on this.
The Meningioma isn’t causing any problems yet so they are happy to leave it as its sitting on the brains main vein.
So I have a full working and social life regardless of this bad luck that has befallen me, and am lucky to say that all treatments are working well..
I am so lucky!!
Oh my goodness. You must have been so scared getting three diagnosis like that at once. I’m so happy you are almost in remission – stay strong!
My daughter has IIH, and your words are so helpful. She’s 13, and she struggles to communicate how she feels. Your words helped me understand what she lives with. Additionally, your post is something I can share with others — family, teachers, coaches, etc. — who don’t understand her condition. Thank you very much, K.
I’m so sorry your daughter is struggling with this at such a young age. 13 is when I started having major health issues as well, and was diagnosed with fibromyalgia. It’s one thing to have a chronic disease at any age, but to have it so young really shapes your childhood. Give your sweet kid a hug from me.
I want to thank you for sharing this article I Also suffer from IIH. It’s always nice to to know you have people out there who understand what your going through. I am getting ready to have the Surgery for a LP SHUNT
Good luck with your surgery – I hope the LP shunt helps you improve!
Hi there! I am recently (Feb 16th) diagnosed with IIH at a late stage in my life (50 next birthday).
I live in a small rural town in New Zealand & I was just fortunate that a doctor from one of our big city hospitals was locuming the day I got finally admitted after a week of turning up to ED with head pain at 8 & 9.
I knew it wasn’t my regular migraines. But it took a week for our ED staff to get serious about treating me.
I have had my first lumbar puncture- which I believe I am very fortunate & blessed to be able to say was completely pain free.
At the moment I have relatively monitor constant pain with a few spikes throughout the day. I’ve had a rapid change in diet with some weight loss, & am taking the Diamox twice a day plus some other meds. The more I read people’s stories though the more I live with the knowledge that the next week, or the next day or the next hour of my life could be very different.
I do have some damage to one optic nerve, but strangely not the other as far as my optometrist can tell. I’ve yet to see a neurologist or opthamologist tho.
Hi Annie! I’m glad you are getting treatment and that your doctor is aware of IIH. You would be surprised at how many doctors don’t even think to diagnose it. I hope you stay well, it sounds like treatment is going nicely!
Thank you so much for taking the words from my mind and speaking it to the people I have found it so struggling to share with my one what I have been going through and how life is with IIh. I am also one of the lucky ones and haven’t had brain surgery yet but was only diagnosed with the disease just under ten months ago at the age of 19. When I started experiencing this extreme headache I had gone to get my eyes tested and they freaked out and sent me to my local doctor, from there once they looked at my discs they too freaked out and I was ambulance out to the closest hospital of suspicions of a brain tumour but after an MRI and further tests was diagnosed with IIh. I have had three lumber punctures though and been in and out of hospital more times then I can remember and have had four calapsing episodes in this period. Medication is also still a very big struggle and I have regular doctor visits. I have also been told my weight is a problem with my disease and have so far lost 17 kg but has so far not helped in the slightest. Every day is a struggle and my heart goes out to those that are also living with IIh though there are few of us doesn’t mean that we are worth being ignored or to be put into a category labeled with “you don’t look sick” one day we will be further known. And again thank you so much for your amazing words.
Hope for a cure ❤️
Thank you for your kind response! Weight loss is so difficult when you can barely function, congratulations on your loss so far! I hope you feel relief soon.
Wow this completely hit the nail on the head… it’s funny because everyone always makes fun of me saying “if I had a headache I would be in bed so it really can’t be that bad” hahaha nope I’m just used to the pain is what I always say! Hahaha it’s nice to know I’m not crazy… I have had headaches my whole life, diagnosed when I was 8 with migraines and put on medication. I am 37 now, I went in for my normal eye exam a month ago and was told that my optic nerves were swollen. Was sent to my neurologist for testing. After MRI and vision test they performed a spinal tap yesterday and freaked out because my pressure was so high. Now realizing I have IIH and have proscribed medication… it’s good to finally after all these years know what’s wrong! But lord I really wish people around me would understand what I’m talking about when I say I don’t feel good but look completely ok! They look at me like I’m faking it! Makes me so mad!
I’m glad you finally have a diagnosis! It’s so much easier to face something head on when you know what it is. I hope the medication helps you
I think one of the worst parts is we look “normal”. I get that all the time… how can I be out and about with a headache, how can I be posting on Facebook if I have a headache, how can I be doing things with my son if I have a headache. People don’t understand that we have lived with this pain for so long that we have learned to work around it, to put on that “Happy” face and to power thru it.
Exactly! We have been in pain for so long that we are used to it. Yes I could halt my life but why? I have kids, husband, job, etc …I have things to do… they will never understand unless they deal with it personally.
Exactly! You learn where your limit is and work on a certain amount of pain until you reach that threshold where you back off because pushing past that point makes it worse. Having an invisible illness is an uphill battle.
Oh my goodness! This was beautifully written!
As a fellow IIHer, having just gone through my eighth surgery in March, my sixth VP shunt surgery sadly, I can totally relate to everything you said.
Thank you for bringing awareness to our disease and the daily struggles we go through.
Thank you for writing this article. My adult daughter was diagnosed with IIH last year, and it has been a scary ride for both of us. It’s a disease that’s so hard to understand and comprehend. This article makes it easier to to be able to explain her condition to friends and family members.
Thank you for your story and all the other people who have contributed! My IIH was found thankfully due to my daughters rigid routine of getting new glasses at the start of the school year she has Aspergers. I also suffer from an autoimmune disease that requires medication that can effect sight ( I different type than the optic nerves) . Our optometrist insisted that day I get checked like others she panicked at the sight of my optic discs. That night I had Drs telling me I had a brain tumour! Wasn’t to the next day it was confirmed to be IIH. It’s been a year. Some days are good, some days are absolutely horrid. I have 3 children 2 with ASD I feel I just have to get on with things. Its tough though as between the headaches, tinnitus, blurry vision, upset tummy, exhaustion you just want to curl up into a ball – some days I do!! I do think the weight thing helps if anything just improves energy levels to fight this rotten disease. I’m scared about where I will end up and so hope it doesn’t ever take my sight.
My IIH was discovered during a routine eye exam too. It’s a very unnerving way to find out – go to the eye doctor expecting new glasses and come out with referrals and a warning of a spinal tap! I can’t imagine raising children while battling IIH. That’s a whole other level of warrior!
Hello! I was diagnosed with pseudo tumor cerebri in 2000 and had a VP shunt placed in2001. I am lucky that I haven’t had to have a revision, but have been suffering from daily headaches the last 3 years. The Dr says my shunt is working, yet nobody can figure out why I still have these debilitating headaches. It’s Gerri g really old, really fast. One good thing is knowing I am not alone and that I can go to blogs and people’s pages to gain some support. Thank you for posting this so that other people can become aware.
I’m sorry that despite surgery you still have headaches 🙁 Honestly I hear of this frequently – despite perhaps the disappearance of paps or placement of a shunt people still get the daily headaches. I really wish doctors were more willing to look into why instead of being so dismissive of their patients.
Very informative!! My DIL has been diagnosed with IIH and my husband has glaucoma so I had lots of questions about what the differences are in the two of them. I have a medical background but had never heard of this so this was very clear and informative. My gosh…there are some crazy illnesses out there that are just unnecessary and cruel. This is one of them. Lymphedema is another…which yes, i have that. God bless you for taking the time to school so many folks.
Gina in Dallas aka ladyjack51
I also have IH and am getting ready to have my second VP Shunt operation in less than 8 months. This has been a great article and I look forward to seeing more information about this rare disease.
Thank you so much for writing this. I am a fellow IIHer. I have had two brain surgeries, three spinal shunt surgeries (insertion and removal), two seizures, and a bought with meningitis all in the last year. I still have headaches every day and fatigue. It has gotten to the point where I needed to stop my Masters degree work and stop working. Your article is spot on and I am very appreciative for it. Thank you!!!
Thank you! I’m so sorry you had to stop your Masters degree 🙁
Finally someone who understands what I’m going threw. It’s horrible my family thinks I’m not that sick but they just don’t understand. That was the best anyone has explained how i feel on a daily basis. Thanks
*hugs*
thank you for this article …IH took my son’s hearing too. it also took his life.. he was 25 years old.. and at his passing probably weighed 100 pounds.. he was diagnosed in 2008 and passed away in 2017… not only did it take his vision and hearing but at the end his kidneys just shut down.. he had 15 surgeries and countless spinal taps and hospital stays..and as you said a headache everyday… not a day went by that his head did not hurt.. some days a 5 but some days a 10….I watched him go from a healthy 14 year old to bed ridden and death.. with one complication after another all due to IH..doctors say IH is not a death sentence but I believe it can be.. I believe it took my son from me..pills or shunts nothing worked for him…I have met and grown to love many with IH and pray daily for them.. I will always fight for IH.. I believe it has nothing to do with weight female or fertile as doctors like to say..because my son was not any of those..I also believe the IH foundation is great but we need more then data.. we need REAL research on IH..I only wish I knew someone or somewhere to start it…thanks again for this article.. God Bless and prayers for a pain free day..
I am so sorry for the loss of your son <3
I have had ooh or pseudotumor cerebri for the past 3 years,went into remission for a few months but it’s back with a vengeance. This information and article was a breath of fresh air. I don’t feel alone anymore.
I meant iih not ooh lol
Thank you for this article. I’ve recently been diagnosed with IIH. I spent several months seeing different doctors about different issues (ear pressure/ringing, neck/shoulder pain, and just not feeling like myself). Finally, my optometrist figured out what was going on when on a routine exam observed papilledema. It’s very hard to explain to family members and coworkers about your pain when there is no obvious sign that you’re unwell. I’m still learning to adjust my life style so I don’t exhaust myself and suffer with pain later in the evening/pain. I plan to share your article with my friends and family. Hopefully, it will help give them more insight into this disease.
My optometrist found papilledema during a routine eye exam as well!
It’s probably silly but this brought tears to my eyes. It’s hard to explain what this is like and yet you said most of what I try and explain not that anyone ever gets it. Thank you for writing this and helping people like myself find an explanation for this awful illness.
*big hugs*
Hey! I have IIH and unfortunately have had to undergo brain surgery! Thank you for this amazingly detailed article that I can share with friends and family!
I am one of the few people that have iih now being 15 i have had a couple spinal taps though no shunts or any thing like that since i was diagnosed around age 10. I have had many rumors around school saying different things about me since people like to talk though none of it really bothers me they dont understand so why blame them i mean everytime im out of school for more than 2 days people assume im out for some huge surgery when really im just out for something like strep throat. The worst thing about iih is how your head always feels like something is running around your head having a party making you miserable.
This is the most relavent thing I have read reguarding IIH— most people do not understand the daily battle we face each day. I am currently 22 years old and I am in nursing school, I also work part time 24 hrs a week as a CNA in my local hospital. My life does not have a pause button on it and it is incredibly hard to manage my busy lifestyle with the symptoms of IIH. I am currently being schedule for surgery where they will place a VP shunt. I am nervous for this new road ahead of me, but I am hopeful that this will decrease my symptoms. My intercranial pressure is at a dangerously high level and I cannot wait to get some relief. There have been several doctors along the way since my diagnosis in (2015) that have use the fat shaming methods and it is extremely unsettling when I have maintain the same weight over the past five years. I have worked so hard at weight loss with no changes. I am currently about 180 lbs and I do not believe this IIH diagnosis comes from my weight as I am an extremely active 22 year old. I eat extremely healthy and am consistent in my diet. It’s so unfortunate to have this diagnosis and I have never met another individual with IIH. I would love to hear some stories and how you have coped with this illness! I am an extremely positive individual and I believe you grow through what you go through, and that this will only make me a strong individual and in about a year an amazing RN❤️
I stumbled across this website and am so glad I did. I have recently been diagnosed with Idiopathic Intracranial Hypertension and have just started a new medication (Diamox). It has helped somewhat with the headaches – at least my head doesn’t feel like it’s in a vice anymore. I also have lived with chronic pain for almost 20 years due to an injury from my former career as an RN. I am now a teacher and the thought of not being able to continue really bothers me. Your post really helped me see things in a different way than hearing it from the doctors. I will definitely be checking out the IHR Foundation for sure … the more information the better. I just hope I don’t get to the point where I need to have surgery – I am pretty tough but the headaches are brutal. I’m even getting use to the floaters/dirty dishwater vision! I can manage that but the headaches and light issues are so unpleasant :((
Hi I just found out a couple hours ago that I either have iih or a tumor but they are leaning mire toward iih they will be doing more testing probably next week. So I am here reading about iih in hopes to learn more. Thank you for sharing this.
[…] written before about living with Idiopathic Intracranial Hypertension (IIH) and the difficulties of dealing with this diagnosis. Chronic pain of any kind in any form can be […]
Wow. I could have written this myself. I particularly connected with your comments about it being a fine balancing act. If I overdo things now will I lay for it later. We dance with the devil! Thank you for putting into words what I feel every day X
This was such a well written easy to understand article. I was a nurse for almost 19 years and never heard of. IOH till I woke up blind in my right eye. I have just seen a judge for my disability after I was denied 2 times. I had a great attorney but I know she would get flustered with me (I get flustered with me) I would literally burst into tears uncontrollably then a few minutes later I would be laughing. I emailed her this article with a little note. Read this Incase you ever have another client like me and so maybe you can understand me ,your crying laughing anxious client that doesn’t look sick.. I got an email back with a thanks and she enjoyed the article and it was very informative.
You really explained team IIH perfectly thank you!
I was diagnosed with PTC (Pseudotumor Cerebri) AKA IIH back in 2004 at the age of 12. I totally understand what you mean by headaches. I unfortunately had experienced the lumbar headache which is also from IIH because of the pressure build up. I was told that I had only 23 months to live before they found out exactly what I had. Thankfully, I’ve been in remission on and off since then (currently, I’m in remission), but it was such a scary time for me because I was just a kid. Since they didn’t know what it was, I was told to stop all activity and because of that, I gained over 100 lbs between my 6th and 7th grade year and developed depression due to bullying. I’ve been on a mission to lose weight, but let’s face it. It’s a bish for sure, but I’m staying on it the best that I can! Thank you so much for writing this, all I could do was nod my head and just go, “YASSS GIRL! PREACH!” I hate that weight is the common thing to pick at and be told that that’s why you have “X, Y, and Z” when weight is a symptom of something else most of the time. It’s kinda like, “I know I’m fat, you clearly can see that I’m fat, let’s move on from that, thanks!” Ha ha!
Anyway, thank you so much for writing this piece, I’m doing research on my disease for a health essay and it’s been bringing up a lot of horrid memories.
xoxo,
Ileyia H.
This was most uplifting. Thank you for writing it. I have been diagnosed with iih for 5 years. I had an lp shunt placed a year ago. I am very allergic to sulpha and cannot take the regular medication. I suffered without any medication for a few years because my doctors couldn’t agree on if I actually had it or not. I became a regular at the er to get lumbar punctures. One neuro flat out told me I have psychological problems. It took one awesome neuro-ophthalmologist to set them all straight. When you are in such pain for so long you forget what it’s like to not have it. The relief I felt from the surgery was so great that the pain from my incision with no big deal. I have been able to lose a 20% of my weight but now my symptoms are worse. Read a couple of studies that suggest weight gain is a symptom and not the reason for iih. Thanks again. Feels good to know you are not alone.