Dizziness & headaches

I’m no medical expert, but here is some practical advice: you need to calm down immediately—and I mean right now. You aren't helping anyone by staying this worked up; you're just causing yourself extra harm through pure anxiety. I know it’s easier said than done, especially if you have a tendency to panic—trust me, I’m the same way—but you HAVE to control it. Regardless of what the diagnosis ends up being, whether it's serious or minor, managing your stress is the first step toward recovery.
Your current lifestyle, the lack of routine, and this constant stress are only making things worse. You need to get your act together: eat regular meals, get enough sleep, and start looking after yourself. You’re far too young to be living like this; protect your mental health now while you still can. 👍

redharbor23 said:I’m no medical expert, but here is some practical advice: you need to calm down immediately—and I mean right now. You aren't helping anyone by staying this worked up; you're just causing yourself extra harm through pure anxiety. I know it’s easier said than done, especially if you have a tendency to panic—trust me, I’m the same way—but you HAVE to control it. Regardless of what the diagnosis ends up being, whether it's serious or minor, managing your stress is the first step toward recovery.
Your current lifestyle, the lack of routine, and this constant stress are only making things worse. You need to get your act together: eat regular meals, get enough sleep, and start looking after yourself. You’re far too young to be living like this; protect your mental health now while you still can. 👍

Haha, true enough. 🤣
So, I went in for my checkup today, and I finally have some decent news. In just two days, after taking five corticosteroid pills, my platelet count actually doubled. Went from 18 to 60 between Wednesday and today. Small wins, I guess.
They told me I'm still on the meds for now. I've got another follow-up scheduled for July 4th to figure out the next steps. To be fair, things are looking up—the morning dizziness is finally gone. I barely feel any spinning while the pills are active, either. Well, "barely" is the keyword. I still get hit with a wave of lightheadedness here and there, especially if I get worked up or if I'm just plain exhausted. Lately, I've been waking up around 7 AM every day, mostly just from the stress of all these tests and doctor visits.

That’s good to hear, but take it slow. If you approach things with a bit more composure, you’ll find they start looking better.
Don't let this scare you 😉 it isn't a reflection on you. I spend a lot of time reading and writing in forums dedicated to malignant diseases, and those people are going through hell. But if you could just see what sheer willpower can actually accomplish 🙏 🙏 I've seen it firsthand. Just take it one step at a time, stay calm, try to minimize your stress levels, and get outside into the fresh air as much as possible. 😁
Keep us posted. 👍

copperpilot11 said:Thanks for the heads up. Got my neurology referral today, and I'm heading in tomorrow to see how the steroid treatment is working.
On Monday, I've got an ENT appointment for a full balance system check—middle ear stuff, etc. Honestly, I probably won't sleep easy until I'm 100% sure there isn't something serious going on in my head.

By the way, placidorca16, do you ever struggle with balance when it's dark or in low light?
When I say balance issues, I mean actual vertigo and being unable to stand on one leg, which is pretty much the standard balance test...

Well, whenever I had those dizzy spells or felt unsteady, it didn't really matter how much light there was—it happened in both bright rooms and the dark—though it wasn't quite bad enough to make me actually fall. I could still stand on one leg, I guess, just with way less control and a much shakier sense of stability.😕

redharbor23 said:That’s good to hear, but take it slow. If you approach things with a bit more composure, you’ll find they start looking better.
Don't let this scare you 😉 it isn't a reflection on you. I spend a lot of time reading and writing in forums dedicated to malignant diseases, and those people are going through hell. But if you could just see what sheer willpower can actually accomplish 🙏 🙏 I've seen it firsthand. Just take it one step at a time, stay calm, try to minimize your stress levels, and get outside into the fresh air as much as possible. 😁
Keep us posted. 👍

I know... And I'm not trying to downplay anyone else's issues. I know people who were diagnosed with all sorts of tumors, some even passed away. It's just... everything hit me at once, all these problems piling up without any answers. I'm still a bit worked up, which is why I'm pushing for the neurologist. If the results come back clean, I'll finally be able to relax (as weird as that sounds).

And yeah—I'll keep you guys updated. I have a full ENT appointment this Monday. Everything from my balance (which is still shot) to hearing tests.
On Wednesday, I've got an orthopedist checking if these dizzy spells are coming from my neck, and then on the 7th, I'm heading in for blood work to check my platelets. Honestly, a break from the needles would be nice; my upper arms are covered in bruises and little holes. Even the lady at the lab gave me a sympathetic look today when I showed her my arms.
On top of all that, I still need to schedule the neurologist... Yeah, having a blast.

Look, you're probably fine. They aren't going to find anything besides some weird platelet count—it’s just everything piling up on you at once and finally hitting a breaking point. I've been through the wringer myself, bouncing between my GP and specialists... ended up being a total mental burnout. You need a psychiatrist or a therapist, honestly. Even if it's just once a week, you gotta go. It's all just stress, man.

yo... any updates? let me know!

Got it... just finally today.

So, I did a full ENT checkup last week, but didn't get the actual results until this morning. Doesn't really change much though—my doctor already gave me her "off the record" take that everything looks fine...

But they did flag something else, something a bit more serious than I expected. It's autoimmune thrombocytopenia. There’s no cure because it’s an internal issue. My bone marrow makes enough platelets, but then my own immune system just starts killing them off.
I'm still on corticosteroids for now, though I'm tapering down starting today. They want to get me off them soon since my count hit 108, which is pretty close to where it needs to be.

The catch is, since there's no cure, they're telling me I have to manage this for life, doing blood work at least once a month. That's a hard pass for me. Not for my whole life. Honestly, I've lived with low platelets for God knows how long without knowing, so I'm not about to overhaul my entire lifestyle now.

As for the dizziness, it's still there, just less intense. Probably isn't even the platelets—more likely from ramping up physical activity. It's led me to think it's all in my cervical spine, maybe restricted blood flow to the brain. That would explain the spinning and the issues when moving from light to dark. On top of that, I've got these sharp pains in my lower back and some stinging sensations in my neck.
I've tried scheduling an appointment with an orthopedist three times now, but after a quick chat and a surface-level exam at the clinic in Boston, I'm still stuck. Now I need full X-rays of my neck and spine.
Plus, I have a neurology appointment on April 30th to hopefully rule out anything with my brain. Everything else seems to be checking out okay. 🤷

feeling any better at all?
did you end up seeing that neurologist?
really hope things are looking up for you 😉
hit me up later

Drew Jones26 said:feeling any better at all?
did you end up seeing that neurologist?
really hope things are looking up for you 😉
hit me up later

Yeah, saw the neurologist. Got referrals for an EEG, CT, Doppler, and VEP. Already finished the VEP, so I've just got those three left.

Saw my specialist for the thrombocytopenia today, too. Had to stop taking Decortin 20 because the side effects were brutal, and besides, they’re saying that was just a temporary fix anyway. Now they're suggesting I just get my spleen removed... a perfectly healthy organ. Of course, I said no. They're giving me a 50/50 shot at everything being fine after surgery. Not exactly a winning bet, especially if I have to spend the rest of my life on meds just to make up for a missing spleen.