Life With Idiopathic Intracranial Hypertension

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Life With Idiopathic Intracranial Hypertension IIH/PTC/BIH awareness and support. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss. My ears ring and swish.

Pseudotumor Cerebri/Idiopathic Intracranial Hypertension information


Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are h

eadache, nausea, and vomiting, as well as pulsatile tinnitus (sounds perceived in the ears, with the sound occurring in the same rhythm as the pulse), double vision and other visual symptoms. IH is diagnosed with a brain scan (to rule out other causes) and a lumbar puncture; lumbar puncture may also provide temporary and sometimes permanent relief from the symptoms. Some respond to medication (with the drug acetazolamide), but others require surgery to relieve the pressure. The condition may occur in all age groups, but is most common in young women, especially those with obesity. Secondary Intracranial Hypertension information


Causes:


Intracranial hypertension was first documented in the sixteenth century by a Dutch explorer, Gerrit de Veer, who identified the toxic effects of polar bear liver on early Artic explorers. Several men in his expedition developed secondary intracranial hypertension (SIH) and nearly died after consuming polar bear liver, which contains lethal levels of Vitamin A. Excessive ingestion of vitamin A is now a recognized SIH cause. Other examples of SIH causes include:

• Head trauma (including post-traumatic brain injury (TBI) )
• Stroke (subarachnoid hemorrhage )
• Cerebral blood clots (dural venous thrombosis)
• Kidney failure
• Liver failure
• Sleep apnea

• Drugs associated with IH:

o Tetracycline
o Minocycline
o Isotretinoin (Accutane)
o All-trans retinoic acid (used in the treatment of promyelocytic leukemia)
o Excessive ingestion of Vitamin A (hypervitaminosis A)
o Amiodarone
o Nitofurantoin
o Lithium
o Levonorgestral (Norplant)
o Growth hormone treatments
o Steroid withdrawal

• Underlying infectious diseases:
o Meningitis (bacterial or viral)
o Lyme disease
o Human immunodeficiency virus (HIV)
o Poliomyelitis
o Coxsackie B viral encephalitis
o Guillain-Barre syndrome
o Infectious mononucleosis
o Syphilis
o Malaria


• Other underlying diseases:
o Lupus
o Sarcoidosis
o Hypoparathyroidism
o Addison’s disease
o Behcet disease


More SIH causes are thought to exist, but research is needed to confirm whether there are true relationships. Both idiopathic and secondary intracranial hypertension can cause the same physical symptoms of raised intracranial pressure and can become chronic; the main difference between the two forms is the presence of a cause. We asked our followers to send us some descriptions of their IIH symptoms and feelings towards those symptoms. We selected five to include. " there is a leprechaun in my brain with a hammer and an ice pick his sole purpose is to reach the pot of gold located at the bottom of my neck so he hammers away all day to get past the maze that is my brain.. every-time he gets close the witch that has cursed us both sends him back in further .... He has to start hammering away all over again... he never reaches the gold and my pain never ends "


" Sometimes it's like my head, neck, and upper back is on fire. Sometimes it feels like my head is in a vice grip and someone is tightening up. My eyes feel swollen and burn. "

" Imagine your head feels as though it's been crushed by a vice, a headache unlike anything you've ever felt before, where every part of your head hurts and the pressure is unbearable, and it's a pain no-one can see. Imagine a world in permanent soft focus, where things come in twos, where things disappear momentarily, where you can't tell how deep a step is, where bright light is a pain you can't stand. Imagine a world that sways around you, where you feel as though you're in the middle of a storm on a cross channel ferry, feeling dizzy and sick - yet you're standing still. Imagine you're so totally exhausted that your body doesn't want to move and all you want to do is sleep, yet an incessant roaring in your ears keeps you awake. Imagine feeling lost and fearful, confused in a place you used to know well. Welcome to the world of IIH "

" I constantly feel like my eyes are being pushed out of their sockets. The pressure build up causes a stabbing pain between my shoulder blades and every movement causes various sparkles, skips and blurs in my visual field. On really bad days it's like an ice-pick behind one or both eyes. Sometimes my facial nerves are impaired and it looks like I'm having a stroke. Prior to my stent it constantly sounded like a UFO had landed in my head with the constant "whoosh, whooosh, whoosh" to the beat of my heartbeat. I've begged for spinal taps... not something I'd have thought I'd ever do. "


" Head is in a vice, being tightened all day, blurred vision, stabbing pains in the eyes, memory loss, confusion, frustration, aggitation. hearing only noise while someone is talking to you. knowing what you want to say but you can't put the words together. having to wear dark glasses on a dull day because your eyes hurt. having to put a lamp on before it goes dark because you can't bear the brightness. not being able to do the simplest of things. can't go out on your own because you can't trust your own mind. dodging traffic because you don't see well enough to that car coming. I could go on but I won't "



Feel free to ask any questions that you would like. No question is a stupid question. We try to have fun, yet ICP is and can be a very serious condition. We all have our own opinion on things, so if you disagree with someones comment, kindly state your side. DISCLAIMER:
The information on this page is meant to be for educational purposes only and is in no way to be taken to be or substituted for the provision or practice of medical, nursing or professional healthcare advice, help, diagnosis, services or treatment. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider. Should you have any health care-related questions, please call or see your physician or health care provider

Sources: http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension
http://www.ihrfoundation.org/intracranial/hypertension/info/C17/

We are not affiliated with any other Intracranial Hypertension awareness Pages on Facebook. Our private group is Life With IIH. facebook.com/groups/lifewithiih

01/05/2026
30/04/2026

IHer Question: Those of you with IIH and a LP shunt does anyone has pain above their shunts reservoir? I’ve also had hair loss above the Reservoir. Now let me say having a shunt is nothing new to me…. I got my first shunt in 2020 and the reservoir was having issues and was changed in 2023. But now I’m having more pain…. It feels like bruise above the shunt…. And it runs down the tubing behind the ear.

My surgeon is Dr Timothy Ung and UCHEALTH in Aurora. My normal Neuro-Ophthalmologist is in Monument his name is Dr. Timothy Reeces. He is absolutely amazing tbh my Neuro (who has always been great) but I’ve debated on getting a second option on lately is Dr. Aparna Komatineni.

Well Neurosurgery if forcing a second option from my normal Nuero-Ophthalmologist and UCHealth has scheduled me with Dr. Sanjana Jaiswal, I was originally scheduled with Dr. Jeffrey Bennett. But sadly I had to take the earlier appointment with Dr. Jaiswal.

I’m hoping Dr. Jaiswal is great…. And I’m hoping they figure things out. I’m having those issues with my shunt but I’m also having seizures at this point once a month maybe once a month and a half.

I’m on Lacosamide and it’s making me so sick I can only eat and hold down Ice cream…. I’m bariatric too and had a gastric sleeve done in 2016 when all my issues started they believed it was a stomach issue and converted the sleeve to a full on bypass. So a feeding tube was placed and I was sick off the smell of the tube.

I’m on stressed out with everything. Luckily my drs are great and found a pain management doctor that specializes in Ketamine. I’m allergic to contrast dye as well so anytime something is wrong they have to decide or assume it’s the shunt. Which they obviously do not do. But I’m at the end of my rope. I’m told if it’s the shunt and I need another one (because right now I have one draining the most I can drain possibly) I would have to do a VP shunt and I told them “ABSO-F**KING-LUTELY NOT!!!” My head had had major issues and I will not do that to my spine I already know that the L4-L5 are being held together by blood patches. And I know I also have disc bulging.

I’m just wondering if any one has any experiences with Dr. Jaiswal? Also had anyone has the issues with their VP shunt I’m having and have found a solution? Also has anyone tried anything NEWER than Lacosamide that has worked? I’ve tried everything older…. Keppra…. And everything older…. Nothing has worked.

Also alone else having seizures found underwear that they can wear daily for urine loss?

Thank you all for any help you can give me.

Ventricular drains - Permanent vs temporary.
30/04/2026

Ventricular drains - Permanent vs temporary.

VA vs VP shunt. Which one do you have?
30/04/2026

VA vs VP shunt. Which one do you have?

29/04/2026
25/04/2026

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