Idiopathic Intracranial Hypertension

We got to my appointment 45 minutes early and they were so busy they couldn't take me early. So we sat and my nerves were shot to shit. But then a nice lady came out and said "Nox" and I gave Pauley a kiss and I went back.
I got to the room of the procedure and I laid on the table. The nurses were super nice. Then the doctor came back and said "did you know I did your last spinal tap in 2018?" I said no which is good because that means nothing bad happened.
The first injection was the numbing stuff. It worked great. Then he said "ok now you're gonna feel pressure when I tap in the needle" and he did it and omg the needle struck my left hip nerve. My left hip was really sore when I got home but I laid down and took a nap and when I woke up my pain was gone.
Right now I'm just very hangry. I'm craving a chicken sandwich with onion rings from Burger King. Pauley went to work immediately after the appointment. She isn't home yet. I imagine she's gonna be there till late tonight.
When I woke up from my nap Pauley had messaged me saying I need to message her mom cuz she's been bugging her for updates. So I told her it went fine and the pressure was normal. Now we're just waiting on pathology.
So that's my update.
#IdiopathicIntracranialHypertension

I hurt. I'm tired of hurting. My skull is pounding. My eyes feel like they're being pushed out. My spine hurts from thoracic to lumbar. My right hip is shooting pain down my legs.
There are so many things I want to do. I want to go to GoB to get a first edition of Saga. But I also want to get some munchkin playing cards. It's one of my favorite games.
I need to take Pauley to the thrift shop for pants and shirts. I'm told I have good taste in clothes for women. As long as it's either Goth or witchy pagan.
2 years ago I got a very expensive necklace for Pauley and another one for my friend who literally saved my life. The other friend I got a necklace for up and moved to California and didn't say bye and that really hurt my feelings.
It's far too warm 🥵 in my apartment. We opened the window but it isn't helping. I'm sitting here in a puddle of sweat.
Early morning I had an asthma attack. I had to use my rescue inhaler. I could hear my pulse in my ears but I could feel it on my tummy. I'm also having really strange muscle spasms on my tummy and on my left eyelid.
I had therapy today at 3pm. We talked about some of the big things going on with my health and he was very gentle yet concerned. He knows how my adjustment disorder tends to be when this stuff happens. I told him my headache specialist suspects idiopathic intracranial hypertension IIH and he said it's familiar cuz 8 years ago my PCP suspected IIH. So we talked about how I have to go get a spinal tap. I'm waiting for a call from the headache specialist office.
That's a small update.
#IdiopathicIntracranialHypertension

8 years ago my PCP suspected IIH. Said I had all the symptoms. So I had a spinal tap. It came back negative. Then we ruled out IIH and never had any answers as to the frequency and severity of my migraines.
On Friday last week my strabismus surgeon called me. I had left a message about eye pain during my migraine. I figured a nurse would call me...no, the surgeon called me back herself. She expressed big concerns about my exotropia causing my migraines and the possibility I might actually need the surgery. She said I had an appointment scheduled for July but this was very serious. So she found the earliest I can be seen is April 8th. So we scheduled the appointment.
This Monday I saw my headache specialist. I told her my strabismus surgeon wants to see me. She said she's glad except... Well it's just too coincidental you have all the symptoms of IIH still and well I'm just so concerned about it so I need you to have another ST. I'm waiting for central scheduling to call me to schedule stuff. I don't know how an ST will work with my hardware in my lumbar from the surgery. I guess I'm gonna find out.
My PCP is unreachable through email and on the portal. I can't call to talk to anyone. I need to talk to my previous PCP but he won't talk to me since I'm not paying for direct care. Which I might add is bullshit cuz on multiple occasions he told me he thinks of me as his friend and I was his favorite patient cuz I'm eccentric and interesting and interested in being proactive with my health.
Pauley has no idea how scared I am. I tried explaining to her but it kinda went whoosh over her head. I've been trying to reach out to people for connection but it's not working.
I'm also trying to keep myself distracted so I don't end up in a manic episode. My adjustment disorder is mostly under control. I think the increase of my imipramine is helping. We decreased my Zoloft last month. My psychiatrist wants me off Zoloft. He suspects it's causing my overheating and sweating. I know invega trinza causes sweating. It's not just a little bit either. It was in the 60s and sweat was pouring from my neck and forehead.
So I've got a lot going on. And I feel so alone.
#IdiopathicIntracranialHypertension
#exotropia #strabismussurgery #Migraine

So I got to my appointment an hour early. When the receptionist saw me, she bubbled up and said "oh hi Nox, good morning!" It's nice feeling like I made a good enough impression to be remembered. Then the nurse came out and said hey Nox you ready? It's really nice knowing my doctor and her staff cares enough to remember me. I'm always scared about being easy to forget.
I waited for about 40 minutes and then they called me back. I always have trouble walking after sitting for a while so I waddled to the room. The nurse asked how I'm doing and I said "I'm in a serious amount of pain and I'm tired but I'll be ok." She expressed concern and then she checked my BP. She said it was high but she said it was because of the pain. She asked how many migraines since the Botox. I explained I've had them every day.
My doctor came in and said "migraine every day. Ok first of all I'm stopping the Botox injections like I promised. But I'm very concerned. You've got all the symptoms of IIH (idiopathic intracranial hypertension). I see you had a spinal tap almost 8 years ago for the same suspicion but it came back negative. I want to do another spinal tap."
I explained I talked with my strabismus surgeon and she is concerned that the migraine is being caused by my exotropia. She said she'd communicate with my strabismus surgeon to help continuity of care.
So this is where I'm at. I'm very tired. I made a fancy coffee when I got home from the appointment. Pauley stayed home while I went to the appointment.
I asked her to put on a pot of coffee and she asked me what kind of coffee. I thought a moment and decided I wanted the new coffee from Thrive market called "smart ass". So there was hot fresh coffee when I got home! It smelled amazing. It's not a flavored coffee. I have only had unflavored coffee at diners so having some at home was...odd.
I decided to do something fancy. I sweetened it with Ube flavor sweetened condensed milk. It's such a beautiful shade of dark purple. I added some cashew milk to cool it down. I took a little sip at first and then holy hell I sucked it down like a hore on coupon day. So delicious! It's creamy and luxurious.
I'm a content puppy. But I really want a THC cookie.
#Headache #Migraine #IdiopathicIntracranialHypertension