Today I was thrown a curveball. As a travel blogger, my idiopathic intracranial hypertension diagnosis (IIH) hit hard. You see, IIH and flying are not always a good combination. Once mine is under control, there will be options. For now, I am grounded.
Disclaimer: I am not a medical professional, but rather someone dealing with my own with Intracranial Hypertension diagnosis and recovery plan. Remember to seek medical advice before making any changes in your own life.
What is Intracranial Hypertension?
If you are wondering what is intracranial hypertension, you are not alone. I had never heard of it either.
In simple terms, the pressure of the cerebral spinal fluid in my skull is too high frequently resulting in an intracranial pressure headache or other IIH symptoms. The good news is I finally have a diagnosis to explain the series of neurological problems which started last October. It is a rare condition, with lots of names, called intracranial hypertension, idiopathic intracranial hypertension, benign intracranial hypertension, or simply IIH. Regardless of the name, what causes intracranial pressure remains unknown.
I struggle now with what to write. Do I whine about the intracranial pressure symptoms and feeling cruddy all the time, or do I talk about the future? If I don’t get it under control, there is a 25% chance I might lose most of my eyesight. It’s pretty scary.
Intracranial Hypertension: What Can I Do Now?
- Reduce stress
- Reduce weight to normal range (my doctor suggested weight loss can sometimes put IIH in remission)
- Get more sleep (I used to average 5 hours per night, now I get 7)
- Cut out caffeine (I am four weeks without coffee)
- Reduce salt
- Walk (It’s the only exercise they allow, otherwise no lifting and no bending). Hubby gave me a fitness tracker (Fitbit Alta) and now I walk in Shakespear Park almost every day. It cheers me on with messages like “Go Rhonda” and “You walked 76,853 steps last week”.[UPDATE: I believe my fitness tracker was hugely helpful in getting me into remission.]
- Stay grounded: At the initial diagnosis, they didn’t want me above 5K feet. Therefore, there was no IIH and flying for a while as well as no mountain elevation. [Update: now I can fly with prescription medication that allows IIH and flying without complications]
I also started monitoring my blood pressure with an upper arm blood pressure cuff. It’s super easy to use and takes less than a minute. This was my own idea, not my doctor’s suggestion. Somehow it is comforting to know that my blood pressure is still okay on days when my stress is up. Or, when my blood pressure is too high, I can choose a less stressful activity.
Intracranial Hypertension: What can you do?
- If you’re local, walk with me, but remember I have to go slow, I can’t raise my heart rate too much.
- Have a cuppa with me, I can drink herbal tea.
- Carry things for me as for now I am not supposed to lift anything.
- Don’t be offended if I turn down your delicious home-cooked food as it’s probably not on my diet.
- Remember that the trouble is inside my skull so while I may look fine and not complain too much, I generally feel cruddy.
- Make me laugh – really it has nothing to do with it, I just like to laugh.
Learn More About Intracranial Hypertension
If you want to read about the condition, check out one of these two articles (both titled simply, “Intracranial Hypertension”):
Or, if you want a much more technical explanation, pick up one of these books. They are all way beyond what I understand or even want to understand about this condition.
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