Sleepless Nights

It’s 2 am, and the headache has already hit hard enough to wake me from my sleep. I feel it so sharp inside my temple that I swear if I could slice open my head, I would be able to remove the stone that is piercing my brain.

I try to change positions to bring relief, only to commence the whooshing noises of blood rushing in my head. I am tormented by these angry waves roaring at me in this silent hour of night.

I can’t take it anymore.

I get up and am then hit with the pounding, pulsating pressure on my brain and eyes. If I give it a moment, it will calm down enough for me to open them. Then I will be able to look around at the buffet I call my medicine cabinet. Nothing will be particularly helpful with the pain or pressure, especially at this hour, but at least they will help me sleep through it all better. Hopefully.

Otherwise, I will be left to continue tossing and turning all night over the same problem that will still be there to greet me come morning.

The Never-ending Nightmare

For a long time, I dreaded going to sleep at night. I stayed up as long as possible because I knew that if I went to sleep, I would wake up in pain.

At the same time, if I did go to sleep, it was never sound. It was never the full 8 hours. Even dreams would send my pressure skyrocketing. Sleep was nothing but writhing beneath my sheets in pain and praying I wouldn’t wake up blind.

It was taking showers while everyone else was sound asleep. It was weakly holding onto the shower wall because it had been nights without rest.

No, nights with Intracranial Hypertension are not nights at all. The sun and moon and earth just swirl around doing their thing while nothing in your body changes.

Why?

But why does this happen? Isn’t resting good for your body to recover?

Of course. Our bodies are miraculous.

At night, while your body is lying down for a prolonged period of time, spinal fluid production increases and reabsorption decreases. This is thought to actually help clear out the toxins that build up around your brain during the day.  But it also why so many of us with IH wake up in pain, as we can’t take any extra fluid around our brains.

On top of this, the pressure of carbon dioxide in the blood also increases. And if that isn’t enough, the veins in your neck that are responsible for draining blood from your head become impaired while lying down. This disrupts spinal fluid absorption even more.

What Can We Do?

So if we have no choice in what our bodies do at night, what can we do to relieve the pain?

It can feel hopeless, but perhaps there can be hope. Here are a few things you can try to get a decent night’s sleep:

Position and/or Pillow Change – Often times, people are able to find relief by changing their sleeping position. Many have found that sleeping with a wedge pillow or more propped up relieves the pressure, as gravity plays a big role in the process of CSF. (You can read more about that here.)

I personally have found that sometimes lying on one side versus the other helps. As bizarre as it sounds, I have gone from a perfect night’s sleep to excruciating pain in seconds all by turning over.

I also find that if I try to prop my pillows to be more upright or wedge-like, it tends to cause more issues with coat-hanger pain, triggering more headaches and ultimately more pressure issues. It’s almost as if it kinks the system. Instead, I prefer to have something rolled underneath my neck. This seems to allow things to flow more freely. There are cervical pillows available, but I prefer creating my own arrangement.

There has even been a growing popularity among the IH community of using Squishmallow pillows, or something of a similar plushness. I can agree that this is a very comfortable option.

Have a Sleep Study Done -Sometimes, sleep apnea can be a factor in IH. Sleep studies may be suggested by your doctor to see if this is the underlying cause.

Look Into Your Diet – While there is no set diet for IH, some patients find they do have dietary triggers. It may be worth looking into what you eat before bed or what time you last ate before lying down.

Honestly, this is all just experimenting to see what works for you.

Medication – Medication often seems out of the question when an episode hits in the middle of the night. It’s not usually advised to take strong pain killers on an empty stomach. If you take diuretics to relieve the pressure, you will still be up half the night going to the bathroom. And you certainly don’t want to take a steroid at 2 am. But that doesn’t mean medicine can’t help.

In early 2019, I began taking a new medication (Cymbalta) for chronic pain that seemed to reduce these night time/ early morning headaches. (Update 2024: I took this medication for a couple of years before bed and saw a great improvement at night. Even after stopping, there still have since been no extreme nighttime/early morning episodes.

What Helps You?

While I do wish there was more advice I could offer on the subject of sleep, I have unfortunately found little else to relieve this night time issue. But thankfully, there is a strong community of IH warriors and medical professionals who are out there looking for answers.

And if you are one of those people, we would love to hear from you!

Please let us and others know what helps you get through the night by commenting below. If you are still struggling with finding relief, you are also welcome to share this part of your journey below.