Headache

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

I gotta see my headache specialist soon. I'm gonna call them tomorrow to schedule an appointment.The Botox didn't work which I knew would happen but no everyone was like 3 times the charm. Fuck that.
We're running out of options. But the gorilla in the room is... My exotropia is making me strain my eyes cuz they keep being stupid and doing double vision shit. And then my eyes start hurting in the back. Then I get pain around my temples and then I get a really nasty migraine. Then the migraine makes my eyes hurt worse. But no, I'm just supposed to get bifocals.
Bilateral intermittent exotropia, atrophied optic nerves, and narrowed optic chiasm... But nobody can tell me why. I'm told to just get used to it. "Sometimes there is no cause for bad luck". I'm sitting here crying. I need some answers. I need to know why my body is breaking. I need to have hope but instead I've got unanswered questions and more chronic pain than I can handle.

Better late than never 🌙 It's that time of the week! List 3 things below 👇
#MentalHealth #Agoraphobia #Anxiety #AnorexiaNervosa #AutismSpectrumDisorder #ADHD #BorderlinePersonalityDisorder #BipolarDepression #BackPain #BorderlinePersonalityDisorder #ChronicFatigueSyndrome #CeliacDisease #Depression #Epilepsy #FamilialHemiplegicMigraine #Fibromyalgia #Grief #ChildLoss #Headache #JointHypermobilitySyndrome #Lupus #MoodDisorders #PanicAttack #Relationships

I’ve struggled with chronic head and neck pain for almost 20 years. Two years ago I had a Peripheral Nerve Stimulator (PNS) implanted. If anyone is looking into this as a pain control option, I’m happy to answer any questions! This is a snapshot of my experience thus far. It’s partly internal, partly external (the battery/generator is won outside). On the whole, I definitely recommend it! Especially as an alternative to spinal chord stimulation (SCS), as it is less invasive, longer lasting, and generally considered a safer option. I’ve had both systems, but the SCS kept getting infected and had to be removed multiple times. This system has a few minor drawbacks, like some discomfort at the implant site, difficulty keeping the external device connected, and issues with the construction of the therapy discs themselves (they’ve literally just fallen apart several times). So I can’t in good conscience wholly recommend the Nalu system. But there are other manufacturers, and the technology in general is wonderfully helpful in managing pain! My doctor is hoping to do a revision soon and switch to a system by Curonix, which should fix a few of those issues. It’s not perfect, but it’s a wonderful alternative to relying solely on pain medication! And on the whole, I recommend looking into it if you have difficult to treat nerve pain! Feel free to message me if you have any questions about it!
#ChronicPain #ChronicIllness #Headache #Migraine #OccipitalNeuralgia