Idiopathic Intracranial Hypertension

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Idiopathic Intracranial Hypertension
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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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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-
side-by-side.

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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