To say it’s been a shitty start to 2018, would be an understatement of epic proportions.
I was diagnosed with a chronic condition called Idiopathic Intracranial Hypertension. A condition, which put bluntly, could lead to permanent loss of vision or blindness.
That’s the worst-case scenario.
I sought medical help as soon as the symptoms occurred, they were pretty hard to ignore. It took a few weeks to get a diagnosis, but my persistence at speaking to my GP, A&E and out of hours doctors when I could no longer cope, brought with it a conclusion in the form of Idiopathic Intracranial Hypertension. I was able to begin treatment as soon as possible.
What is Idiopathic Intracranial Hypertension?
Well, apart from having a really long name which is hard to remember, in a nutshell, it basically means there’s too much cerebrospinal fluid (CSF) which leads to an increase in pressure surrounding the brain. It’s a rare condition which only affects 2 out of 100,000 people. Women of childbearing age who are overweight are particularly at risk, and they make up 90% of patients. However, it’s unknown what other factors could cause the condition.
I first noticed it when I had a ten-day headache-from-hell which was excruciatingly painful. I couldn’t keep any food or liquids down and I had an extremely loud, pulsating noise in my ear. I had CT scans, blood tests, numerous discussions with doctors but they could never put a finger on what it was.
Eventually, the pain in my head lessened, but I noticed some damage to my eyesight. I went to an optician who confirmed I had swollen optic nerves (or Papilledema) and I had to seek medical help from the eye casualty on the same day.
Unfortunately, it’s unknown why the fluid surrounding the brain isn’t being flushed out correctly, which is why the term ‘idiopathic’ is used.
What are the symptoms of IIH?
Idiopathic Intracranial Hypertension can, understandably, go undetected for a short while at first. Even with a visit to the A&E and to my local GP, I was still none the wiser as to what was wrong with me. I was told it was a virus, possible ear infection or a migraine. Ultimately, it was a bit of a mystery.
I knew deep down it was none of those things. I think we know intuitively when something’s not quite right within ourselves. But who was I to question the opinions of doctors and nurses? So I tried to squish my symptoms into a box and they never quite fit.
Here’s a list of symptoms, which can be detected when first experiencing the condition but will also be persistent throughout the illness. Basically, the symptoms never truly leave, they simply scale up and down.
The headache-from-hell is where it all began and luckily (touch wood) it’s the worst I’ve had so far. There’s always that fear it will eventually return. Since that week of agony, I’ve had smaller headaches here and there that have eased off, but the feeling of pressure and tenderness seems to be a permanent fixture, especially when I’m mentally or physically tired.
My vision causes me the most concern and panic. Sometimes I’ll wake up and for the first half of the day, I’ll forget I even have issues with my eyes but then all of a sudden they’ll start to blur and feel strange. I wear my glasses to focus when driving, reading, watching TV or on my laptop. Sometimes I just need to put them on when I’m walking around Tesco to read the signs or labels on packages. The prescription on my glasses has never been particularly strong, and I’ve never had day-to-day issues with my eyesight until now.
The blurring and double vision can make me feel isolated from what’s going on around me. If I’m walking along a busy road or in a packed shop, I can start to feel quite anxious or claustrophobic. This usually leads to a feeling of panic, increased heart rate and sometimes I get emotional. It doesn’t help that I have an anxious disposition anyway.
I’m a bit more clumsy now, sometimes dropping glasses of water or walking into dining room chairs. I don’t know if this is to do with my eyesight, or if something else is at play. Perhaps I have balance issues because of my ears, or maybe the isolation sensation is affecting my judgement?
Pulsatile tinnitus can be the most frustrating symptom. I have a whooshing ‘mechanical’ sound in my ear. It kind of sounds like a washing machine. Depending on how much pressure I’m feeling in my head, will depend on how loud it is. I also have a pulsing sound which matches the rhythm of my heartbeat.
Anyone who has any form of tinnitus will be able to tell you how intrusive it is, especially at night when trying to sleep.
Some days are definitely better than others, and the level of tinnitus usually depends on how my head is feeling in general.
Nausea, vomiting, drowsiness and irritability
My body is a bit of a minefield at the moment. It’s extremely sensitive, and I have to be careful not to push too hard. I become tired easily which I assume is part of the drowsiness element. Sometimes I find it hard to keep my eyes open and all I want to do is lie down.
I was extremely sick when I had the headache-from-hell. I’ve also had quite a bit of nausea and a lack of appetite in general.
It’s really hard to say if I’m irritable because of the condition. Everyone gets irritated, right? I don’t think I’m particularly irritated, but I am more emotional than anything else. I cry quite a lot, usually if I’m having a bad day but anything can set it off.
Treatment of Idiopathic Intracranial Hypertension
Weight loss has been proven to help alleviate the symptoms and in some cases reverse them. This is the route I’m taking, along with medication.
Weight Loss / Low Salt Diet
Upon finding out that weight loss was one of the primary forms of treatment for IIH, I was already on board. I had, after all, been losing weight very slowly over the years.
Plus, being told you could lose some or all of your eyesight is enough to ditch the pizza and pick up a salad, let me tell you.
In a way, this form of treatment is great because it’s within my control. I’m the only person who has a say over what I put in my mouth, and although sometimes it can feel as though there’s a hefty weight (no pun intended) on my shoulders, ultimately, it’s actually liberating to think that my diet and fitness choices could help reduce my symptoms.
The neurologist advised that in his experience, anecdotally, when people begin to lose weight they don’t notice much difference with their symptoms but they tend to reach a weight loss threshold, whereby the symptoms die down or the condition is reversed.
Obviously, that’s not something I can hang my hat on. Everyone is different, and it’s not scientifically proven, but hearing that there may be a way out of this was enough to get me in a pair of leggings and on a treadmill.
The doctors I spoke to didn’t give me any advice in terms of how to lose weight, or foods to avoid. But upon further research, I’ve found some studies in the USA which have suggested a low salt diet. I must admit, I never usually check the salt content of food. Since keeping track of my food intake, I actually can’t believe how much salt is in certain foods I used to eat, particularly ‘convenience’ foods like supermarket sandwiches, sushi, soups and tinned food.
I’m wondering if a high salt consumption is a risk factor for IIH?
Acetazolamide (Diamox) is a diuretic, often used by patients with glaucoma, some types of epilepsy and fluid retention. The medication helps flush the fluids from the body which, in turn, lowers the pressure surrounding the brain for IIH patients.
I’ve started on a dosage of 500mg per day, in the form of two tablets. However, some people may be given a higher dosage depending on the severity of pressure on the optic nerves and loss of vision.
The side effects have taken time, patience and inner strength to get used to. At first, I was getting terrible ringing in my ears, which coupled with the tinnitus I already had just seemed so unfair and cruel. The ringing has subsided, I do get it occasionally but nowhere near as loud or intrusive.
I get tingling in my hands and feet, which is a really strange sensation at first. It can keep me up at night and I usually have to wait for it to die off before I go back to sleep.
It’s hard to work out if what I’m feeling is the IIH or the medication side effects sometimes with regards to tiredness, sickness and emotional strain.
Lumbar Puncture (Spinal Tap)
Lumbar punctures can be used as a form of therapy as the extraction of fluid can give the patient a sense of relief. However, as I quickly learnt, it doesn’t last long.
After I had my lumbar puncture (spinal tap) I felt on top of the world. The tinnitus had vanished and my head felt less stressed and stuffy. I thought that was it. I falsy believed that the lumbar puncture would keep my symptoms at bay for a couple of months. The truth is the body produces around 600-700 ml of spinal cord fluid (CSF) per day. It really doesn’t take long for it to become trapped again because the drainage issue hasn’t been fixed.
I think that was the hardest pill to swallow because no one at the hospital told me this. It really didn’t take long for my symptoms to come back.
It’s also not advisable to have routine lumbar punctures, which is why medication and diet are so important.
Surgery is an option if all else fails, and to be honest it’s not something I’ve looked into with any great detail. Mainly because I don’t want to think about it. I’d like to stay in the here and now and concentrate on doing what I can. I’m keeping a positive mindset (where possible) and don’t want to focus on the could’s of the future too much, although I do think it’s also healthy to have a rough outline of the possibilities. Unfortunately, I’m someone who gets obsessed with looking at Google and I just don’t want to go down that rabbit hole.
I’ll be splitting this into parts, as there’s so much to discuss. Not just about the condition, but about my weight loss and fitness aims, nutritional findings and also the emotional/mental health element.
It’s been a rough ride so far, but every day I try to stay positive and educate myself to live a healthier lifestyle. I’m not perfect, and I’ve had some serious moments of doubt and depression, especially since I have such a complicated relationship with food, diets and mental health.
Look out for part two!
For further information and support, visit IIH UK here
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If you’ve recently been diagnosed or have had Idiopathic Intracranial Hypertension for some time and want to reach out, please get in touch via email: firstname.lastname@example.org