Idiopathic Intracranial Hypertension

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Idiopathic Intracranial Hypertension
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Puzzled by Melanie R.

You held on-

to life’s puzzle pieces

when you didn’t know where to start.

One piece at a time,

could finally see-

through pain and the tears in your heart.

Each piece of His wonder,

the pieces of you-

Great Love in the darkest of skies.

No, you didn’t stumble,

brought healing from Father

when puzzled in pieces of life.

You rounded the corners,

when jagged and cornered;

they started to fit perfectly.

Each piece in it’s place,

God’s guidance and grace

with beauty of Psalm 17.

#MitochondrialDisease #ChronicIllness #Gastroparesis #IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #RheumatoidArthritis #RareDisease #IdiopathicIntracranialHypertension #ChronicPain #ComplexRegionalPainSyndrome

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3 Ways to Manage Energy Fluctuations with Chronic Illness

Ever found yourself struggling to manage energy levels amidst the rollercoaster of chronic illness? It's a journey filled with ups and downs, but within those challenges lies hope, resilience, and a path to reclaiming control.

In my latest blog post, I've gathered insights and practical tips for navigating these hurdles with grace and empowerment. From riding the highs to finding peace amidst the lows, we're exploring how to thrive despite life's obstacles.

Join me on this journey of discovery and support as we navigate the complexities of chronic illness together. Together, we can empower each other to reclaim vitality and find strength in our shared experiences. Ready to take the next step? Head over to the blog at the link below and let's embrace this journey with determination and resilience.

3 Ways to Manage Energy Fluctuations with Chronic Illness

#ChronicFatigue #ChronicFatigueSyndrome #IntracranialHypertension #Anxiety #IdiopathicIntracranialHypertension

3 Ways to Manage Energy Fluctuations with Chronic Illness

Explore coping strategies and adaptability techniques for managing energy fluctuations in chronic illness.
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Stripes & Stars of Rare Disease by Melanie R. #RareDisease #ChronicFatigue #MitochondrialDisease #IdiopathicIntracranialHypertension #ChronicPain #InsideTheMighty

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

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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

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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

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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

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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

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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*


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