Idiopathic Intracranial Hypertension

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I Wear My Stripes For Rare Disease!

Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.

Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.

Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.

It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.

Thank you for prayers, caring & sharing!

I wear my stripes in support of Rare Disease!

Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!

Thank you Jesus!
…and by His stripes we are healed!
God Bless!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy

9 reactions

Tips and tricks needed


I'm starting a new job and I already experience a lot of pain so I'm looking for tips and tricks to not feel worsening pain after being on my feet for 12 hours.

I have idiopathic Intracranial hypertension, fibromyalgia, and highly suspected ehlers danlos syndrome. I have already bought compression stockings, a huge water bottle, and a tens machine.

Any tips?

#IdiopathicIntracranialHypertension #Fibromyalgia #EhlersDanlosSyndrome #JointHypermobilitySyndrome #ChronicFatigue #ChronicPain


I’m new here!

Hi, my name is ShelbyBelle. My life completely changed when I was diagnosed with an illness that went undiagnosed for 10 years. Now I finally have an answer as to why I’m in so much pain and going blind, but adjusting after the diagnosis has been difficult.

#MightyTogether #IdiopathicIntracranialHypertension #OccipitalNeuralgia #TrigeminalNeuralgia #PTSD #Depression #Anxiety

12 reactions 3 comments

I'm new here!

Hi, my name is brazil24. I am 30 yo and I'm here because i am looking to gather as much information as i continue searching for answers for ongoing and worsening symptoms. I was diagnosed with IIH at 13yo and Solor urticeria at 21yo. For about 9 years i have had episodes of aching/pain which would take over my body. While it was barable in early year, the last 6 months it has become constant and significantly worse. Yet still nothing. I have 8+ years of working in healthcare, went to school for biomed prior, and am currently working on furthering my education to become a nurse practitioner.

#MightyTogether #ADHD #Migraine #IdiopathicIntracranialHypertension

2 reactions 1 comment

IIH for the past 20yrs

I don't talk about my illnesses alot bc it's taken the life I use to have. I lived a great life filled with adventure and ppl who loved me. Where are they now? Great question. My best friend of 25yrs is the only one who stayed. I'll do anything for her and her kids. IIH caused me to have a deep depression and I truly believe I had to go thru it to get a slap to wake me up. Sometimes you have to hit rock bottom to rise up again. After I came out of that I thanked God for bringing me thru. Then set my mind I was going to live better and started living a 180° difference from the way I had been. Yes I'm sick but what can moping around the house do to fix it? How can staying in the bed all day help me? No I don't want to get up and sometimes it tremendously hurts bc I have Fibromyalgia too. I'd rather stay in bed but I force myself to at least get up and wash my face, comb my hair and brush my teeth. Usually by then I feel like eating a little something. To look at me you'd never think I have a prob eating anything but I do. My MIL says I eat like a bird and sometimes I forget to eat at all. I forget everything and that's the most frustrating. Words. Things I just did. The atmospheric pressure gives me migraines. Ask yourself how often do you have a migraine close to a storm? Can you "predict" storms better than a weatherman? I can! 😂 I don't even watch the news and I know with 100% accuracy when a storm is coming. I've never been wrong once. What kind of storm is another thing bc I only know something is about to happen. See if you're the same way.

Off the subject are you taking Diamox? They give that to seizure patients! Ask why you are taking it? I'm not on Diamox after my Doc tried to kill me. Literally. He didn't do a simple blood test and if he had he would have known that Diamox was removing Potassium from my body. I was already taking Topamax since it was on the market for my spine. All they needed to do was increase the dosage and put me on potassium fluoride! My reg doc figured it out. My heart got down to 45 beats per min. Yeah dead. My feet were black with blood pooling in them. Don't let that happen to you! Question EVERYTHING a doc gives you and ask why until you understand it in English. Be well my friends and we will get through this together! *gentle hug*


18 reactions 3 comments

Coping Through the Pain/Anxiety

What are some coping mechanisms when dealing with the pain? I have had migraines since I was a child but over a year ago I was diagnosed with Idiopathic Intracranial Hypertension (Psuedotumor Cerebi). Now on top of the pain, aura, etc I also get back, neck pain, lightheadedness, dizziness, and severe pain behind the eyes and from my shoulders up. Any day where the pain is less than a 7 is a blessing. I still work full time and push myself through the pain, recently I've noticed myself feeling much worse despite losing weight and my eye doctor saying he didn't see edema behind my eyes. Today it was so bad I went into the restroom and cried and asked myself how much longer can I do this, working full time trying to live life as normally as possible. I can't even walk long distances anymore (I used to walk a few miles a day) without getting short of breath, very light headed, and dizzy and without sharp pain. My family suggested getting a portable wheelchair, which I think at this point I may need. Any advice would be greatly appreciated. Thank you! #chronicmigraine #Migraine #IntracranialHypertension #IdiopathicIntracranialHypertension #IIH #iihwarrior #ChronicPain #RareDisease #CheckInWithMe #BackPain #TheMighty

38 reactions 20 comments

Symptoms Worsening #RareDisease #TheMighty #MightyTogether #IIH #IdiopathicIntracranialHypertension #Migraine #IntracranialHypertension

Champions adjust, and I am currently learning this the hard way but that's okay. I have my faith and my support system. I try to count my blessings. I started having blackouts. I can't ignore it. I see spots and sometimes can't see anything. I constantly feel the pressure in my head now the lowest it goes is a 6, sometimes I get random stabbing pains in my eyes. I've been getting episodes of weakness where I feel lightheaded and dizzy and I lose my balance, it makes me concerned that I will pass out, especially since I'm still working full time as a Medical Receptionist. My vision has worsened. My glasses are now too weak of a prescription. I go to Lens crafters Saturday thank God. I can't drive, which I never really did to begin with besides practicing. I realized this when my husband told me "don't feel bad because even if you wanted to drive I wouldn't let you right now because I'd be afraid of what could happen if you have an episode on the road." It never even occured to me until now. I count my blessings daily. I'm alive I'm fighting. We will find a cure. We will not suffer alone. 👊🏽 #IdiopathicIntracranialHypertension #IntracranialHypertension #RareDisease #ChronicIllness #ChronicPain #ChronicMigraineSyndrome #Migraine #PsuedotumorCerebi #rarediseaseawareness #TheMighty #MightyTogether #CheckInWithMe #mightystrong #ChampionsAdjust #StayStrong #CheerMeOn #grateful #TheLittleThings