When you have chronic illness, a headache is rarely just a headache. What you think is a horse can oftentimes be a zebra. So when you have hydrocephalus like me, it can also be a shunt malfunction. In fact, that’s the first thing you should get checked out when you have hydrocephalus, a shunt in your head, persistent headaches and dizziness that won’t go away. “It’s the shunt, stupid” was the mantra drilled into our heads (apologies for the pun but come on, it was *right there*!) at national conferences.

Always. Check. The shunt. First.

Always check the shunt first, oh but also, “A headache could just be a headache. People with shunts can get ‘just a headache’ too.” Could just be a horse. So, y’know, figuring out when to go to the ER is clear as mud. 😐… 😐… 😐

Stress, tension, migraines can affect us too. Or in my case sudden changes in barometric pressure can cause headaches. And Colorado has those all the time! 50° swings in less than 24 hours are pretty common through out the year. And they will take me out! A day or two before they happen, I’m laid out in bed, sensitive to light and sounds. When they pass, I get better. It may or may not be shunt related, may or may not be related to the neuroma close to my shunt.

But the point is I still don’t panic about it.

Recently tho, I felt like I had a reason to panic.

I was standing in the bathroom, and suddenly I got dizzy. Not just any kind of dizzy. Not the kind of dizzy where you stand up and think, “Ok I did *that* too fast. 😵‍💫” No. A kind of dizzy that felt…familiar. A kind of dizzy that felt eerily recognizable to my soul.

The last time I felt it was summer 2013, when the 6 week old shunt they had just replaced my 17 year old shunt with failed. Feelings of vertigo followed by sensations of blacking out.

And it happened a couple more times that day. I spent the rest of the day in a small panic, knowing what I had to do, who I had to call the next day. And it was also a day spent mostly in the ER with Kischa because of some of her own pain she was experiencing that had been lasting a week or so.

So dealing with both, that was good times.

Shunt failure is nothing to mess around with, so the next day I called my doctor to have her send a referral for a shunt CT. She did so, without hesitation.

Meantime, nothing. No dizzy spells. Nothing. I get the CT, get results and…nothing. “No change in ventricles. No indication of shunt failure. “

……..k 🤷‍♂️

Life went on, ok for about a month. No dizzy spells, no headaches.

And then the headache came. No dizziness tho, so no worries, no panicking. “Maybe the weather. Maybe ‘just a headache.’ Maybe just cuz it’s Tuesday.”

But then it didn’t go away. Then the dizziness came.

But it wasn’t as frequent as when it was blatant shunt failure. And when I stopped to think about it for a second I also realized it wasn’t as bad. Oh it was new! It was not normal. But it wasn’t as severe as blatant shunt failure. So I didn’t panic.

I couldn’t just go to neurosurgery because US Healthcare 🙄, so I made an appointment with my doctor again and she agreed that the best course of action was an appointment with the neurosurgery department. “There’s a special number we can call when we feel like patients need to get into a specialty department right away, but aren’t quite severe enough to go to the ER.” So she called the number while I waited.

Neuro calls her back. The doc had enough experience to know what else it could be. Grateful for that, because the answer was something that didn’t even occur to me.

My doc wanted some blood work, mainly to look at my white blood cell count, to look for any signs of infection. She comes back and says, “Oh good, you haven’t had blood work done yet. Neuro wanted a few more tests.”

Ok. 😳

So rather than the one vile, they get 4.

I leave, with the promise that as soon she gets the results, she’ll interpret them and let me know what any results mean that might be out of range.

Meanwhile in a departure for me, I’m actually relatively calm about what the results might show. I know right, so weird! 🤣🤷‍♂️ (And shout out to the bestie who ChatGTP’d some stuff for me and helped me narrow it down before the doc commented on blood work results!) The normal CT a week earlier and the lack of frequency for the headaches and dizziness had me thinking it was likely not the shunt. That’s all I cared about it. No shunt surgery. All that mattered.

So it could be bad, but hey, I probably won’t need surgery. Let alone two surgeries in 6 weeks.

***Now’s a good time to mention, the last shunt revision really messed me up! Well, the second one in 6 weeks messed me up. The first one had me thinking, “Ok well, 17 years ain’t too bad. Whatev. Was a good run.🤷‍♂️” But the second surgery six weeks later?? The second surgery 6 weeks later, that one did a number on me! On my sense of safety. On my sense of mortality. On my anxiety! Everything leading up to that surgery -the dizziness, the pain, the black outs, the “lost weekend” I couldn’t remember. The doctor saying he was frankly surprised I hadn’t at least had a seizure as my ventricles filled up with fluid- it was all bad, recovery wasn’t great, and I was hyper aware of all my physical pain. Any little headache was not “just a headache” anymore. Led to a downward spiral in my already precarious mental health. That year culminated in me cementing my place in the Semicolon club.

So maybe someday I’ll write about that. But, y’know, probably not.

We now return you to your regularly scheduled blog****

So I wasn’t panicking. Mostly just wanted to know what was wrong.

Results came in several hours later. With her comments. I took a deep breath in (I may have been panicking just a little bit when the moment of truth actually came and the results would tell me what’s been going on. 🤷‍♂️😇)

DRUMROLL PLEASE…. 🥁🥁🥁🥁

Severe anemia.

I am severely “iron deficient” anemic. Apparently there are several different types of anemia, one I think is even indicative of cancer! But mine, and the most common, is iron deficient anemia. Maybe related to my severe osteoporosis, maybe not.

So that’s why I’ve had dizzy spells. That’s why the world spins. That’s why I’ve had random headaches. And that’s just the 2 biggies that led me to seek a diagnosis. But hindsight being 20/20, it’s also likely why I have brittle nails and why the bathtub hair catcher has seemed just a little too full of hair for my taste! Never lost clumps of hair or anything, but anemia can cause thinning hair and hair breakage.

And that’s why I’m always exhausted!!! I thought it was just because of Life™. 🤷‍♂️ Just life and everything that happens in life. Everything I gotta do as an adult with Spina Bifida. The appointments, the self care, all the things involved with chronic illness. And then my wife. All the things I do to care for my wife who has End Stage Kidney Disease and is on nightly Peritoneal (home) Dialysis. I’m the main caretaker. She helps where she physically can do things. My parents are a god send, and support us the best they can. But it’s a lot. I do a lot.

And I sorta just thought I’m always exhausted because everything is just a lot.

Turns out I’m doing Life™ with severe anemia. Ha! 🤷‍♂️

So. There ya go. Moosey is severely anemic. Add that to the list of stuff, along with Spina Bifida, secondary and tertiary conditions of SB, severe osteoporosis, and, I dunno, this hang nail that’s been bothering me for a few days. 😊 🤷‍♂️

So next up, an endoscopy and colonoscopy to look for a cause for the blood loss. Ulcers or polyps, respectively. Had a colonoscopy, my first, four years ago where they did find and remove 2 pre cancerous polyps. Get your colonoscopies, kids. I’m thinking more likely it’s an ulcer. I take prescription Omeprazole for reflux, have for years, and was told it can work to not only stop the reflux but also mask an ulcer.

I can’t get in for those procedures until April, 2 months away. Hopefully when that time comes, they’ll find something easily fixable. Guess we’ll see.

But hey, at least it’s not shunt failure. Stay tuned for updates after they stick cameras in me… 🤷‍♂️

What’s your experience been like with anemia, severe or otherwise? What helped? Pills? Infusions? Tell me your experiences.