History

32M, 5’7, 200lb

For a few years I had a bunch of pressure in my head. Worse when lying down or bending over. W/ no insurance, self-pay urgent cares kept guessing maybe sinus infection and giving me antibiotics (no help) and steroids (did help unless I came off them abruptly). This year it got too bad for me to lay down in bed at night, had to start propping up my upper body to sleep.

Relevant existing issues - VP shunt, surgically (is installed the right word here?) at age 4 months or so. Seemingly solved the problem and had no complications with it.

My understanding of what went wrong isn’t great. It was a long time ago and my parents weren’t very consistent. There are no paper records left, and their memories are foggy. They aren’t even sure which hospital did it. I do know I had 1 seizure, and there was some projectile vomiting.

Test Results

This year I got insurance and went to a Neurologist

MRI - Normal

CT- Normal (Shunt placement was safe)

Home sleep study- mild sleep apnea requiring only weight loss for intervention

Bloodwork - Vitamin D 25, Vitamin B ~200

Nerve Conduction Study - Small tissue neuropathy (he says, due to the vitamins. He said to take them for 6 months or so and I should see the damage repaired)

Probable diagnosis - Idiopathic intracranial hypertension (the nerve stuff was unrelated, he just found it in the normal exam)

Dr. Requested a lumbar puncture to confirm diagnosis. Cost for me - $4,600

I told them “no thanks” on the spinal tap. We played chicken for a while and eventually his office called back and said he wanted to start me on Diamox “until” I can get the LP.

In the meantime, I’ve had some possible memory issues, including before starting Diamox. I’ll forget what I’m doing in the middle of an activity and just feel sort of foggy or confused. I also forgot one day that I had played a game with my brother and husband for a few hours the night before. I’ve fallen asleep or started dreaming while sitting up and having very recently felt fully alert. I’m not walking around tired all day, I’m waking up from sleep refreshed, etc. I just sometimes don’t stay awake?

EEG. Came back with “Rare right frontal lobe flowing and potential sharp wave discharges.”

Dr. is ordering a 72 hr ambulatory EEG.

I’ll level with you guys, this looks like it is going to be very expensive. I’ve been down this road before, paying thousands of dollars for tests just to hear “yeah you’re fine take some antibiotics for your sinuses,” and then my family are the ones paying for it when our budget is cut to cover the cost.

If I haven’t had a seizure except once when I was a baby, do I really need to do this EEG? Can I just do what I did with the LP and tell them “maybe later” and we can move on to another step that’s less expensive?

What are my risks here that this EEG is supposed to be testing for? Is it the only way to find out what’s going on?

Thanks

Thank you in advance to anyone who actually took the time to read all of that. It means a lot to me. If this post makes me sound really dumb, I apologize. I am learning to deal with some trauma particularly around spending money on myself, and each visit or test is a big challenge right now.

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TL;DR

Ya boi got too much brain juice, and not enough wallet. Got out of spinal tap by saying "nope" and Dr moved on to treatment okay. Now his thinker is shorting out and the medical industry is gunning for that bank account. Can he do it again, folks??