Real IIH Patient Stories
Below are a series of real patient stories
The Unicorn
On a routine eye checkup when I was 21 years old I was told by the optometrist that I was to go to hospital immediately as they had found something. Obviously feeling scared and confused, I made my way there and after a few tests they diagnosed me with Idiopathic intracranial hypertension. I had no idea what this was and to be honest couldn’t even really pronounce it until about a year ago. Little did I know it was to become apart of my life forever. After tests I was told I was to have an emergency lumbar puncture to relieve the pressure, which I’m not going to sugar coat is top 3 of my worst things to do in the world. My body personally doesn’t react well to LPs and I’m sleeping for 2 days afterwards with splitting headaches. I also had to have an MRI to rule out a brain tumour.
After the initial shock of the diagnosis, I went into survival mode and started talking with the eye specialists to get some answers. This is where I first met Prof Dr Helen Danesh-Meyer, my hero for the past 10 years. I was put on diamox and thankfully reacted okay to it. Fluid stayed stable for years and I was eventually able to come off it. I found it such a weird process because there wasn’t really any answers, or reasons why people get IIH. There wasn’t any quick fix and not many people knew about it. To be honest, I was a bit naive in those years and thought I was superwoman and nothing could stop me and also because I didn’t have any symptoms…until I had a relapse 8 years later. Fast forward to 2020, 29 years old and I was going through a really stressful time in life and started having horrible headaches and neck pain, something I can’t even describe. I just thought I was tired and needed to rest so stupidly ignored it (don’t ignore your body telling you something) one night I was sitting talking to someone and in a split second my eyesight flipped and everything went blurry, it was the most frightening thing but once again I just thought I was tired so went to sleep. I woke up and my eyesight was still blurry and I knew something wasn’t right so I went straight to the hospital. The one thing I have to say is don’t take no for an answer if you are in pain, the hospital did a few eye tests and sent me on my way. I knew deep down I wasn’t right so wasted no time in calling Helen. She didn’t hesitate and tests found my pressure was through the roof. Once again I got rushed for an LP and lots of tests. Because my pressure was so high it pressed in my optic nerve causing permanent damage, I now have a blind spot in my left eye. I am as Prof Danesh-Meyer says “the unicorn” losing sight permanently is very rare. I remember being so angry because I just couldn’t understand why or what I was doing wrong. It is a very frustrating journey because some days may be good and some bad. At one point I was taking 16 diamox tablets a day. There was a solid 3 month period after this that I don’t really remember much, my body was trying it’s hardest to recover.
Moving forward, The only thing I could really do was start taking care of myself and as advised by medical professionals to lose weight as there had been a link to IIH and rapid weight gain. To be honest, I never ever wanted to be going through this again so I was willing to do what ever it took. Over the past 2 years I have lost 25kgs and my condition is stable. I go into the greenlane eye clinic for check ups every 3 months. My blind spot is still here but I am alive and can do most things everyone else can do. I know it can be lonely as not many people are aware of the condition and also you don’t look “sick” from the outside so it’s not obvious. No one really knows how to help, most days you don’t even know how to help yourself. After my relapse, I shared my journey on social media and had an incredible response from women going through the same thing. This is what I hope for this, that you are not alone, there are people who care and are trying to provide more answers and solutions.
How and Why?
Can my 7-year-old healthy boy develop IIH.
My son, a 7yr old, fit and healthy boy - fell ill with a mysterious 'virus' back in 2020.
It started with him having severe pain in his back, he was then hallucinating and had photosensitivity. He was initially assessed at Middlemore, and after many many tests his body was still shutting down. The doctors didn't know the cause and therefore how to treat! They gave him courses and high doses of various antibiotics that weren't working or making him better. He was then urgently transferred to Starship for treatment. Again his temperature, blood work/blood pressure and vitals were not stable and the many tests and bloods tests that were done were still inconclusive. However he went for an eye screening test with a neuro ophthalmologist at Greenlane Eye Hospital which confirmed he had elevated optic nerves. This then spurred the doctors at Starship to proceed for a Lumber Puncture to test his cerebrospinal fluid (CSF) pressure, which confirmed the diagnosis, with a pressure over 50. MRI tests also carried out confirming he has transverse sinus stenosis.
He was put on a drug called Diamox (Acetazolamide which is essentially a diuretic) to reduce his pressure somewhat. My Googling of the symptoms took me down many routes of possible diagnosis, as all the doctors were still unsure of what he had or why he had this - but I HAD to find out what was happening for my usually super fit (slightly underweight) 7year old!
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There were many possibilities such as flattening of the pituitary gland, chiari malformation, and autoimmune diseases. There were a number of other treatment options, such as Topamax (Topiramate), Lasix (Frusemide) and even shunt or stent (neurosurgery) surgery - I have looked into and researched them all and asked his paediatric specialist dozens of questions every week for the months, and still do now in the years following - however due to the limited amount of people who have this condition in NZ (and the limited knowledge of the condition in the general medical field) it can be frustrating getting answers - you may never get them too.
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Finally after 2 years of being on Diamox his neurologist said he could finally come off them (however I decided to slowly reduce the dose rather than cold turkey, as I felt this could have an adverse effect on the pressure). He still has some neck pain, reduced physical capabilities, regular brain fog and tinnitus but we are managing his symptoms and keeping a close eye on him. We have found that isotonic sports drinks, reduced salt / healthy balanced diet and drinking lots of fluids have helped him.
Life-changing surgery
Weight loss treatment for IIH
My journey with IIH started in April 2018 when on a family holiday I started experiencing severe headaches and double vision. We returned home on a Friday afternoon and on Saturday I went to the doctor to try to find what was causing it and to get some relief. I was sent straight to Middlemore Hospital where I spent several hours and had many tests including X-rays and a CT scan. The possible diagnosis was that it was a long lasting migraine and I was given medication to help it. The medication eased the headache but did nothing to help the double vision. I was discharged home that evening.
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The following Monday I booked an appointment with the optometrist because the next possible cause that I could think of was that my eyesight was bad and eye strain was causing the double vision. Luckily I was able to get an appointment at 2pm that day and it was not long into the examination and the optometrist told me to go directly to the Greenlane Eye Clinic as my optic nerves were swollen. She was adamant that I go that afternoon, as soon as possible.
We reached the Eye Clinic shortly before 5pm and more tests were carried out. By the time we left I had been diagnosed with IIH, prescribed Diamox, advised that losing weight would help reduce and maybe even completely cure the problem, and told I would need a lumbar puncture to check the pressure. During the lumbar puncture a few weeks later I was told normal pressure was getting a bit high at 25, mine was 37. Removing some fluid was great, while I had a bit of back pain, I could see much better for a week or two.
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The following four years consisted of trying to lose weight, attending green prescription workshops (including dietitian sessions), visits to the Greenlane Eye Clinic, Diamox 3 to 4 times every day, more headaches, occasional vision problems which affected my ability and confidence to drive, and generally a poor quality of life. I would lose 10 kgs, then get stressed and eat it back on again. At my heaviest I weighed 112kg, and with a slight 165cm frame, I wasn’t dainty.
In a visit to the Eye Clinic in early 2022 I was told that I had developed some nerve damage to my eyes that would not recover. I made the decision that somehow I had to lose the extra weight I was carrying and hopefully deal with the IIH.
Fortunately I had medical insurance so I approached my broker and asked if it would cover weight loss surgery and if so did he have any recommendations. I was in luck, my policy would cover the surgery and some of the associated appointments, just not the dietitian. I was recommended a surgeon and after the required visits to surgeon, dietitian and psychologist I was booked for surgery in early July 2022. Along came Covid to our household (but I managed to avoid it) just before the scheduled surgery so surgery was delayed a couple of weeks. Finally on 22 July my life was changed. I underwent gastric bypass surgery. It is not an easy way to lose weight as it was a huge adjustment to what I could eat, learning to drink in sips constantly to keep hydrated, making sure I ate plenty of protein etc, but I can only recommend it. The benefits have been huge.
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I have lost over 40kgs, my IIH is much more under control and it’s been fantastic going (op-) shopping for a new wardrobe. While losing the excess weight hasn’t fully cured the IIH, it has definitely helped considerably. I still take some diamox but dosage has reduced significantly. I still find when the air pressure is low with bad weather I am more likely to have symptoms, sometimes when stress levels are higher it may trigger a few symptoms but overall the surgery has had massive benefits. Best of all, I believe my chances of further eye damage are way less than they would have been without the surgery.
How IIH and me became to be!
At the age of 16 I became incredibly unwell and went to the ED. My symptoms included having the most insane headaches that I could not relieve, spinal pain, wanting to sleep all the time and vomiting with any kind of movement or touch. It was feared I had Meningitis, the doctors were quite concerned. I had a lumber puncher which ruled out Meningitis and I was sent home being told it was just a migraine. I’ve had migraines before and knew this was not the case. My symptoms did not improve so there was another visit to the ED. I remember being so frighten because no one knew what was wrong with me but everyone could see I was sick and that I was in pure agony. I felt I had to communicate clearly if I wanted any kind of relieve from the crushing feeling inside my head. During this particular visit to ED I developed the symptoms of first double vision and then complete darkness in my right eye. I had another lumber puncher, this time laying on my side instead of sitting up the fluid shot out and overflowed the test tube because the pressure was horrendously high. This is how I was diagnosed with Idiopathic Intracranial Hypertension (IIH).
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The pressure around my brain was of extreme levels so I had to have surgery to have a shunt placed in with the aim to relieve the build-up of fluid. I didn’t have the option for medication because the pressure was already dangerously high and causing damage to my optic nerve. As I was only 16, I decided to go for the Lumbo Peritoneal Shunt (LP) which is placed in the base of the spine. The LP shunt did the trick for a while and thankfully once the pressure started to be relieved my eyesight slowly came back. There is still significant damage to my optic nerve, so it’s not perfect 20/20 vision. Because of this I have never felt confident to drive as I have little peripheral vision in my right eye and a large blind spot. My Ophthalmologist said at one stage the damage was so severe that they “Couldn’t work out how I could still see but thankful I could.’’
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At the age of 25 it was decided that a Ventriculo Peritoneal (VP) shunt would be more effective at relieving symptoms because it is based in the brain rather than the spine. My symptoms were fatigue, headaches, low mood and craving sugar to give me an additional energy boost. I hadn’t been my happy energetic self for a while and it was quite upsetting to feel like I had lost my spark. Having brain surgery was tariffing and to this day I still cannot believe I actually went through with it. However, I had built a good relationship with my Neurosurgeon and trust him whole heartedly. While the recovery was a slow process and physically, emotional and mentally draining, I do believe I made the right decision in terms of getting my life back and being able to enjoy life again. Yes, I became sick at such a young age and had to deal with things well beyond my years like how to be a strong advocate for myself and how to connect with peers who didn’t quite get it. Thankfully, I do have an incredible support network of friends, family and medical staff. Instead of being angry at getting sick I have embraced having IIH as a part of me but certainly not all of me. I’m now 33 and living a relatively normal and happy life and am incredibly proud of myself and my IIH journey.