Hopefully soon I’ll have blog posts to share that aren’t just about my current health issues… because they’re probably getting boring to read, and to be honest, I’m getting bored about writing about it, but I still need to update y’all about what is going on because I have many concerned people.
For those that are new to this, you can read my series about IIH in chronological order, but the latest post from 2 days ago shared a summary and why I wanted to go to the ER so I won’t do that again now.
So yesterday I was supposed to have a phone appointment with my doctor but he was super busy so when I finally got to him on the phone wasn’t able to fully understand hear about why I needed a referral to the ER, without which my insurance won’t cover it. He told me to just go to the neurologist and neuro opthamologist through my HMO.
I looked for neurologists through my HMO around my country, but I couldn’t find anything, anywhere, more than a few days before the specialist appointment I had at the end of July so I didn’t bother.
I tried to book an appointment for the neuro-opthalmologist, the specialist I needed to see because of my eye issues, that deals with the crossover between the brain and eyes, and what my hospital discharge papers from a week and a half said to do as well as the discharge papers from the ER a little less than a week ago.
However, the next available appointment for a neuro-opthalmologist is at the end of August, and there is no agreement for any HMO to pay for patients to see him, and there is no one else available period. And it is expensive to see him. I made the appointment anyhow, for lack of a better choice.
I also booked an MRI, something that was on my discharge papers from the hospital, and that was also for mid July…
But then I went to therapy and literally was crying, feeling hopeless, because I was on day 21 of this headache and I don’t sleep because of it, and I didn’t have any hope for any improvement because I wasn’t on any medication for it, I wasn’t getting any treatment other than lying down which only helps my dizziness but not my headaches keeping me up. And I decided that maybe I would go to the emergency room even without a referral, even if I needed to pay for it out of pocket. I was just that desperate.
I asked around how much an ER visit cost in cash, and while I’d be willing to pay the few hundred dollars the basic visit cost, the second you need to do any tests it costs much more and you’d have to pay that all out of pocket as well without an insurance referral.
People suggested that I go to a cheap urgent care near me which might refer me to the ER at the hospital, and even though I’d have to pay for that urgent care, it wouldn’t cost as much as a hospital ER visit. But I had to first check whether insurance would cover the ER visit if I had a referral from urgent care.
Before I did that, I decided to try once more through the HMO. They have a phone hybrid triage, where you make a phone appointment with the doctor on call, and if need be he gives you a referral to the ER, and when I explained to him in detail why I wanted to go to the ER he agreed and gave me the referral.
When I was in the triage getting my blood drawn as part of the ER admittance procedure I almost passed out, much more than my standard dizzy spells- I thought I was going to die. They gave me an EKG and then a wheelchair and then moved me from the ambulatory ER to the ER with beds. They gave me the same exact bed I had last time I came, so “nostalgia” lol.
I came to the ER yesterday at 3 pm and they told me I’d stay overnight to see the neurologist in the morning. I saw the same neurologist who saw me while I was hospitalized and I updated her on the situation. I prepared in advance and wrote out what I wanted to tell her, and then used chatgpt to translate it into our local language.
I’ve been experiencing severe positional headaches, which started three days before my spinal tap and were the reason it was performed. When I’m upright for a short time, I develop stabbing pain in my temples and dizziness. When I lie down, the stabbing and dizziness subside but are replaced by a tight, vice-like pressure around my forehead and the base of my skull. I also have pulsatile tinnitus, but only when lying down. These symptoms are significantly impacting my ability to function.
I’m experiencing mild double vision that affects reading, especially in my left eye, along with decreased peripheral vision on that side. I’ve noticed I overcompensate while driving by veering to the right. My vision remains blurry despite switching between reading, computer, and multifocal glasses. I need very high contrast to read—only managing on my phone at full brightness, and even then the screen often appears slightly multicolored.I have intense neck pain, frequent nighttime urination, and very poor sleep. I usually get around 4 hours of broken sleep—waking up every few hours and then unable to fall back asleep because of the pain. I’m also dealing with significant brain fog, memory problems, and difficulty thinking clearly.
These issues have persisted since the spinal tap. I was on Diamox for one week and have been off it for a week, with no change in symptoms. I’m concerned about a possible CSF leak or pressure instability and would appreciate imaging and consideration of a blood patch if appropriate.
The doctor decided to admit me, and said that when admitted I’ll be able to get all the types of appointments it would take months to otherwise get- I already got an MRI tonight, saw a regular eye doctor and got further imaging of my eyes, and the sane neuro opthamologist that would take until august to see and I’d agreed to pay privately for, is now going to be coming to the hospital to treat me as part of my stay.
This time I don’t know how long I’ll be here for, but I don’t feel down about being here. What I care most about is getting my issues under control and as long as I’m in the hospital that can happen and as long as I’m out of the hospital it isn’t. So all the people telling me they are sorry I’m getting hospitalized again, I’m not. It’s what I wanted. The problem was that I demanded to leave the hospital too early last time, in my opinion, so I could take that trip to Malta which never happened in the end anyhow.
What I am annoyed about is that tonight at 1 am, 32 hours after arriving yesterday to the ER at 3 pm, I’m still sitting in the ER. That is what is frustrating me. Because in the ER I’m not settled because I don’t know when I’ll be transferred. The beds here are less comfortable than in the wards and I’m already in pain. There is no privacy, and there is no quiet, making it even harder to sleep at night, something I’m struggling with already anyhow. But probably one of the hardest things is the food situation. In the wards as it is it is hard to get decent gluten free egg free food to eat, but there is food. In the ER there is only bread with cheese and eggs for both breakfast and supper and lunch there aren’t allergy friendly options, but fortunately for lunch today they had a meal I could eat. But for the rest… On the first day I arrived here I ate the food I came here with. And the second day, I’ve been surviving off really expensive gluten free food and dairy things I can eat that they’re selling in the shop in the hospital across from the ER. When it seemed like I’d spend yet another night in the ER I asked them to at least please try to make sure I get breakfast I can eat…
Anyhow, so that’s what is up with me.
Hopefully the next and last update for now will be when I get released. And now, time for some more fun and exciting posts.
