Idiopathic Intracranial Hypertension

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Idiopathic Intracranial Hypertension
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Some interesting information

IIH and exotropia:
Idiopathic Intracranial Hypertension (IIH) causes elevated brain pressure that can trigger sixth nerve (abducens) palsy, resulting in horizontal double vision or, in some cases, exotropia (outward eye turning). While inward turning (esotropia) is more common with this nerve palsy, IIH can lead to various ocular motor disturbances.

IIH and optic nerve atrophy:
Idiopathic Intracranial Hypertension (IIH) causes chronic, elevated pressure that leads to papilledema (optic disc swelling), which, if untreated, can cause permanent optic nerve atrophy and severe visual impairment or blindness in about 10% of patients. It primarily affects young, obese females, with symptoms including headaches, pulsatile tinnitus, and transient vision loss. Early detection, weight loss, and medication (e.g., acetazolamide) are crucial to prevent irreversible optic nerve damage.

IIH and optic chiasm narrowing:
Idiopathic Intracranial Hypertension (IIH) is characterized by elevated cerebrospinal fluid (CSF) pressure, with a strong, well-documented association with transverse sinus stenosis (narrowing of the brain's venous drainage channels). This narrowing is frequently found in 30% to 90% of IIH patients and is believed to contribute to, or be a consequence of, the elevated pressure. While often a secondary effect, this stenosis is thought to act as a "disease amplifier," playing a major role in the pathophysiology and potential treatment (e.g., via stenting) of the condition.

#IdiopathicIntracranialHypertension

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My current situation

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

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Update

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

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Success #neurology #IdiopathicIntracranialHypertension #Headache #Migraine

So. I'm having investigations done because a brain MRI showed increased cerebrospinal fluid pressure. This might mean I have idiopathic intracranial hypertension however I'm aware that the MRI alone doesn't necessarily mean I meet the full criteria. I was referred to a Neurologist. Their triage assessment process takes 30 days which of course I was worried about just because I didn't know if they would accept my referral or how long I might then have to wait for the appointment. Thankfully I just received a call and I've got an appointment in two days time. This is amazing! However I'm also now worried that they view this referral as particularly serious and what that might mean for me. Overall I'm relieved to have the appointment. I'm very grateful for access to a Neurologist.

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Scared for the future #Anxiety #AutonomicDysfunction #EhlersDanlosSyndrome #IdiopathicIntracranialHypertension #Depression

I’m scared of the future. I recently had bad palpitations that landed me in the ER. Everything came back normal except my EKG. They suspect POTS or SVT, but with having Idiopathic Intracranial Hypertension POTS is a common diagnosis alongside it. Plus, it’s worse when my pressure is high.

I also meet the criteria for EDS hypermobile, which would explain the IIH and POTS.

This is good news and bad news. I struggle with health anxiety so much, especially since I went so long going to doctor and not being heard. I was told I’m making it up, and it’s just anxiety.

I feared for so long that something catastrophic would happen because doctors didn’t listen to me.

Now I have to wait till 12/6 to see my PCP and go over the POTS and EDS diagnosis. Then what next?

I’m bombarded with constant intrusive thoughts of fear of what’s next for me. Feeling like a failure because I can’t work, or cook or clean properly. Having such high hopes for my education and career. Now, I don’t know what my future looks like. That’s terrifying.

I just want to be okay. Not great and not bad. Not perfect but not suffering. Just okay.

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New and need help.

I'm new to this app and I'm hoping to get some help with my multiple chronic illness. I have Endometriosis, idiopathic intracranial hypertension, migraines, and fibromyalgia. I've had a hysterectomy and have had two rounds of botox for the migraines. I just learned that Endometriosis can travel throughout the body and I'm hoping someone here has had experience learning where / how to find Endometriosis in other parts of their bodies. As all efforts to stop my daily headache/migraines have been nearly useless I'm hoping to rule out Endometriosis in my brain.
Any help or knowledge will be greatly appreciated.

Thank you!

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I'm new here!

Hi, my name is If_I_Can_You_Can_2. I'm here because
I had found out after all the symptoms I was having, that I have IIH and other issues and I am scared what might happen next and I am interested on researching about it!#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #IdiopathicIntracranialHypertension

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