My experiences with Idiopathic Intracranial Hypertension
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For timeline purposes, posts from 2008-2014 are summaries of significant happenings in those years. Please use the Blog Archive links to start at the beginning.
Past tense/Present tense language may change within a post, but those variances should not impact the overall telling of my experiences. I am Canadian, therefore, the spelling of some words (tumor/tumour, color/colour) may vary depending on if it's my wording or quoted text. I have tried to include both key words in the labels of relevant posts.
The blog contains medical terminology. I have tried to provide explanations or definitions when they occur. Occasionally medical images (nothing too graphic) are included to further explain or demonstrate.
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I have recently been doing some research regarding IIH, primarily looking for information based in Canada as there are a number of Canadian patients on the various boards I've visited on Facebook and I frequently see the comments made that finding information that is Canadian based is non-existent. I know from personal experience, the awareness of this condition is minimal even in the medical community especially when distanced from the neurosciences department in Hamilton.
Most information regarding IIH comes from the Intracranial Hypertension Research Foundation, based in the US and community pages on Facebook where I have noticed references made to support organizations in the US, Great Britain and Australia but no local resources for Canadians.
Google searching Intracranial Hypertension Canada comes up with the following results, primarily a medical journal (which is beyond the comprehension of most patients) and a couple of chiropractic articles referencing the condition.
I had found some information on the braintumour.ca website but currently that information has been moved and links are no longer working. I have been in communication with them to get that fixed as our resources are minimal to begin with.Rhian's story shares her fundraising efforts for brain tumour awareness in Canada.
If you share one post from me... please make it this one! Raising awareness of IIH is VITAL as you will discover reading this post!
A little more follow up on my hospital stay back in April/May. I was referred to yet another neurosurgeon since the surgeon that placed my shunt seems to have disappeared or, as I keep getting told, "is on leave".
My shunt was tied off during my last hospital visit and on August 18th it was opened up again. I was experiencing symptoms of high pressure with the shunt closed, my head was whooshing all the time, more so if I bent forward to pick something up or anything that caused me to strain. I still have headaches 24/7 but when the shunt was tied off, it was particularly worse as it would not ease with medication or positional changes. The CSF was building with no where to go.
When the shunt was untied, those symptoms disappeared almost immediately. I do continue to have headaches 24/7, but I can get minor relief by sitting upright and taking over the counter medications. I am waiting to book a follow up with the NS now that the sutures have been removed, and I am waiting on a referral once again to pain management. I am hoping that something comes out of this visit as I do have something else going on. I can't touch my head anywhere in the vicinity of my shunt.
Any contact with the bulb or catheter in my head causes what feel like nerve flares. I get sudden, severe pain throughout my head, especially across the back of my skull. I also get strange sensations down the left side of my back at random intervals (not related to touching the shunt), at times I'd swear there is something crawling along my spine but there is nothing there.
I visited a local walk-in clinic to have my sutures removed. When I was with the nurse who was taking my background information, she of course asked if there were medical conditions to be listed. I started with the typical "I have idiopathic Intracranial Hypertension, and pachymeningitis..." she gave me a look and said "I'll just put hypertension".
I had to tell her that they were not the same thing at all and that it had to be listed as Intracranial Hypertension or at least entered on the chart as IIH not hypertension, definitely a true indicator of the importance of September being IIH Awareness Month.
Most medical staff have not encountered this condition and all they hear is the "hypertension" part of the condition and automatically record it as "high blood pressure", not realizing that it is actually high cerebral spinal fluid pressure in the skull, certainly 2 very different conditions!
I find it of interest to realize, there are IIH foundations world-wide. I've linked to a couple on this post, but I have been unable to locate a similar organization in Canada!
The most relevant post I could find was from the Canadian Cancer Society, indicating the cause of the increased pressure from a brain tumour. This is an accurate description for someone who does have brain cancer, but misleading for those of us with IIH as the above image from theI have IIH Foundation shows the comparison between the two conditions, the key difference being a brain tumour can be cured, IIH CAN NOT be cured.
For awareness month, many are creating videos such as this YouTube video to share details of the condition with friends and family.
Australia has it's own division of IH support.
I have this blog to share my experiences with this disease in the hopes that it will be shared to help spread awareness.
