8 Things That Help My Idiopathic Intracranial Hypertension Symptoms

Living with idiopathic intracranial hypertension (IIH) is a nightmare, more for some than others.

Had plans for the day? Not anymore, if you’re like me and wake up at 3 a.m. crying from the excruciating pain from a headache that feels more like your skull is trying to give birth to your brain through a nostril. Visual disturbances, neck, shoulder and back pain, nausea, vomiting…Oh my!

So, how can we feel OK when we really don’t feel OK? Here’s some suggestions I’ve tried that may also work for you.

1. Hot shower: Hot water is known to make people feel better. I have found is anything hot like a hot shower alleviates the deep muscle pain that makes holding our head up feel like such a chore.

2. No bright lights: As IIH can make our eyes hurt and photophobic (sensitive to bright light such as computer screens), by either dimming as low as possible or completely turning off all devices you reduce the pain. I don’t drive, but on a really bad IIH day, I have sunglasses with me at all times. Yup, I probably look odd wearing them inside or at night, but you have to do what you have to just to get through.

3. Sleep: If all you can achieve is staying in bed understand that it is completely OK to do this. Most days I rarely get out of my pajamas, and bras are formal wear…They only apply when I apply clothing other than my pajamas. The biggest priority is us, especially when we feel like poo, so look after you.

4. Pain relief: Take it. It might mean the difference between getting on top of the pain and it being completely uncontrollable. Most of us with IIH live in a constant state of being a seven on the pain scale, while anything lower is seen as a time to run around and get stuff done while we can…Then pay for it for the next week. Also, taking pain medication could also mean the difference between getting two to three hours of sleep, versus six to eight hours of sleep. More sleep the better.

5. Hot water bottle: My back gets really sore when the pressure in my spinal column starts to rise and a hot water bottle eases that pain enough to sleep. Yes, i keep mentioning sleep because its an integral part of our ‘Bad Day Healing’ process. So, when your neck and shoulders start to get stiff and sore or your back hurts use a hot water bottle and see if that helps.

6) Music: That God-awful whooshing in our ears is terribly annoying and is also another symptom the pressure within our skulls is high. During the day I don’t really notice it but at night its a whole different kettle of fish. Personally, I use music to drown it out, mostly whales and dolphin sounds, and I have a speaker right next to my bed. The volume is just loud enough to completely counter the whooshing allowing me to hopefully drift off to sleep. A fan has the same effect.

7. Talking: We all have at least one person in our life who we can talk to, so do it. Letting someone know how you’re coping that knows a bit about IIH is good for our mental health, which is just as important as our physical health.

8. Go to the emergency room: My doctor told me that IIH not treated with a shunt can be classed as a medical emergency due to the fact that I can go permanently blind, the pressure within my skull can cause a multitude of issues such as a stroke, or brain herniation. So, if you feel you need to go to hospital, go. Just remember, you are not wasting anyone’s time by going, despite the looks you may get at triage. My IIH got to a point where I was presenting to the ER my need to be admitted for a lumbar puncture.

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