Seeing the Light Without the Pain

Reduced IIH Pressure, Less Chronic Pain, and the Unexpected Joy of Quieter Days

Yesterday was almost pure joy for my senses. Today seems to be following a similar pattern.

Ahh, the joys of quieter days where light doesn’t have a voice and my ears are not tuned into The Buzz 101 FM WBZZ.

In turn, my head doesn’t feel as much pressure inside. The headaches are milder, with no presence of a migraine.

My assumption is simple: Cerebrospinal Fluid (CSF) must have gone down enough to allow some functionality. Just in time, too. I have a family dinner tonight with my partner’s sister and her family.

💡What Is It? Cerebrospinal Fluid (CSF) is often referred to simply as “Spinal Fluid.” It is naturally produced by the body to help cushion your brain and act as radiator fluid for your cooling system. Everyone’s body makes it, but those with IIH-like conditions produce too much or it doesn’t drain properly, creating a hypertension situation. It puts pressure on your brain and causes a variety of uncomfortable symptoms.

Tire Pressure & Tension: Momentary Pressure reduction with Reduced “Invisible” Symptoms

My hearing still rings a little if I listen to something with focus for too long. I still find that I have to turn the sound down the longer I listen. It is wreaking havoc on my education, as I like to use an Immersive Reader for my notes at the beginning of each day.

My diva status has been revoked. Indoors, at least. I can walk around the house without feeling assaulted by light. My vision is still sensitive to light, but less so. My photophobia was intense. Any reduction feels like heaven.

After over an hour of listening to notes this morning, I had to stop to save my ears. The sound was starting to feel intense and create auditory feedback. Think of it like static when you try to tune into a radio station, but it doesn’t come in clearly.

Considering I will be out in public, inside a loud restaurant, I want to preserve what audio and visual tolerances I have today to survive tonight.

Upgrades & Mods: The Medications, Referrals, And Bloodwork

Vitamins Matter

My bloodwork came back. I have high markers for things related to inflammation, and my Vitamin D was insufficient. The normal range for this test was between 30 and 100. Insufficient was 10-29. Under 10 was deficient. I had a 19.

📝 Laughter is the Best Medicine. I had an appointment with my therapist yesterday. While telling her about my results, I noted the insufficiency in Vitamin D. Being a Michigan resident, it is not uncommon to find low levels. I told her, “It is okay. There are another 9 points until it is considered dangerously low. I have some wiggle room.” That is when she laughed and told me that my dark humor is truly what keeps me going day-to-day when everything feels difficult. She is right.

I’ve had chronic pain for years due to my lumbar going through the degeneration process. Before I reached this point, I had lived on NSAIDs and grit alone. It was all I had. I’ve reached a point where NSAIDs are not enough, and grit can only take me so far. I micro-dose THC/CBG edibles, with 5mg in the morning and at night, and 2.5 mg doses as needed (equals around 15-20mg per day). I don’t get stoned, but the combination in edible form does relieve muscle spasms and reduces the pain I feel.

With that said, it doesn’t surprise me that I have all the markers for high inflammation. It is like fighting a house fire with a garden hose. I’m doing the best I can to hold the flames back, but I’m not saving the whole house.

I’m adding Riboflavin and Vitamin D to my regimen. My doctor requested that I use Riboflavin (B2) because it is a natural protector from migraines. With my low Vitamin D levels, adding that became necessary, too. I don’t really go outside much despite eating plenty of dairy. I’m guessing it isn’t balancing properly. It needs help.

Neither vitamin is an insurance-covered benefit, but I found 4-month supplies for reasonable prices. I’ll start those soon.

⚠️ Buyer Beware. Vet where you buy vitamins. I buy from Amazon, but I always try to confirm the product or brand before purchase. In-store purchases are usually a reliable bet. Still, double-check products sold online before purchase. Scammers are out there.

Medicating the Symptoms

My doctor added two prescriptions, too. One is Pepcid. I have GERD that likes to spike based on how I feel. It seems to be the most intense when I am dealing with intense migraines and other invisible illness-related symptoms. I told her that I cannot afford to lose Celecoxib. It is the most gentle NSAID available on the market. It is also less effective for me. However, anything is better than nothing.

No NSAIDs leave me unable to move and crying a lot. I’ll take what I can get.

I already take a GERD-level dose of Pantoprazole, so I was worried about what she would say. I presented options, and she suggested Pepcid at night. If I take my GERD med in the morning plus prescription Pepcid at night, it battles the stomach acid from two sides at different times.

Last night was my first night adding the new antacid, and it turned my life around. I could lie down without having to drink a gallon of milk (slight exaggeration). It calmed the reflux pain enough to sleep comfortably.

Another medication she added was Propranolol. It is a beta-blocker used to treat elevated blood pressure. For me? It is to promote migraine prevention. I briefly used it in the past to reduce anxiety symptoms, but it was prescribed as an “as-needed” medication that didn’t really help. My PCP and I are curious how it will affect my high anxiety levels as a daily medication.

💡Did You Know? As a beta-blocker, Propranolol slows down your heart rate, reduces heart workload, and lowers blood pressure. As I mentioned already, it also helps prevent migraines, reduce physical anxiety sensations, treat irregular heart rhythms, reduce essential tremors, and treat certain symptoms of an overactive thyroid. It doesn’t treat IIH directly, but it can help manage the symptoms of pressure-related headaches.

When I started Losartan late last year, I had a blackout while stretching to turn off a lamp. I woke up sitting on my plastic tote-turned-stool (now crushed), with crushed folding tables and my essentials all askew. My poor laptop took flying lessons, too. My cat had been behind my computer at the time. I woke up around 10-15 minutes later, very confused. My first thought wasn’t why I was on the floor. I wanted to know why I threw everything everywhere, because now I needed to clean.

It took a bit before I realized I didn’t sit there willingly, and I lost consciousness.

We reduced my Losartan. I’d had black spots and shortness of breath already. I didn’t know if that caused the problem or my blood pressure. We felt it was better to be safe, and reduced it anyway.

Adding Propranolol had me concerned about a similar issue happening again. In turn, we added a low dose of the new medication while lowering my existing blood pressure medication. My PCP didn’t mind, but she did urge me to continue tracking my blood pressure to avoid potential issues.

Ophthalmologist, Second Opinion

The last major change to come through was a referral to a new Ophthalmologist. After the previous experience, I knew I needed a second opinion. He could be right, he could be wrong, but I also know he held a grudge against me without explanation.

🔎 Learn More. I wrote about this experience in a previous post: Holding Boundaries in the Doctor’s Office: A Quiet Act of Self-Care. It is available under Diagnostic Mode.

I won’t write about that experience again. However, if you haven’t read about it yet, I recommend taking a look. It’s a firm reminder of why you should always advocate for yourself.

My Craft Room: My Crochet Project is Giving Me Side-Eye

I’ve been really flummoxed by life. Everything feels intense, and my emotions are high. Usually, learning about something helps me feel in control. In control of the illness, and my own emotions, too.

Finding time for myself has brought me some mental peace. Using my “executive function transition” printable is also helping me move between tasks while feeling scattered.

📎 Free PDF Download. If you’d like a copy of the tool I use to help with task transitions, visit Executive Function Tips: Mastering Task Transitions or visit the Skills Toolbox.

I keep using it as a reminder to stay on the outskirts of hyperfocus and allow myself moments to stretch, stand, and relax. I think I live my life in a state of chronic stress. I’m very jumpy, always worried, and always trying to resolve something. I don’t think my system ever calms down. This is my first step into attempting a calmer life.

So, I crochet. It is when I feel the most peaceful. I’m working on the unique frog-accented netted slouch.

🔎 Learn More. I discuss the slouch and have earlier photos, which can be found on “I am grateful for creative expression and inspiration when all else feels too intense.” It is shared under Grounded & Grateful.

I am not of the appliqué-design mindset. I crochet wearables, mostly, with a specialty in hats. The occasional blanket, too.

I wanted to make a special hat for my daughter. Her favorite color is green and she loves frogs.

I collect Hello Kitty, and she collects Keroppi.

I decided to try making an appliqué design again, and this is what I came up with. Worse than that is my ability to embroider using crochet stitching.

Making two eyes and a mouth cannot be that hard. Well, I was right, it wasn’t bad. It took some patience, but I finished that first eye. I’m happy with it. I need more practice, but I am happy.

📌Crochet Patterns (for fun). Check out this cute, giant amigurumi/stuffed crochet frog pattern on Etsy. This is an affiliate link. Costs you nothing, and still helps support our content creation.

Ever since my daughter told me she is now collecting all things frog, I have been trying to check out as many fun forms of inspiration as I can.

Final Thoughts

Now that it has been two hours since I started this post, I can only hope it doesn’t feel like it takes two hours to read! I think I covered everything on my mind, though.

I am going to try functioning as a college student once again.

Those of you who made it this far, thank you for stopping by and staying with me for a while. I enjoy sharing my journey with you, as I consider my goal a success if one person feels like they are no longer alone.

Is that you, or do you know someone this would resonate with? Please take a moment to like this post and share it with someone you know. It might be the message they needed to hear today.

What do you do on the days your chronic pain or symptoms relent? The portal to sharing your story is found within the rectangular box below. I’d love to listen!

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