IIH Warriors India

22/11/2025

💙💚 The IIH Chronicles – Hiranyadha's Voice [swipe ↔️]

"The doctors diagnosed my IIH on time and said I was ‘saved from major vision loss’ because of the timely intervention,” — shares Hiranyadha from Visakhapatnam, reflecting on her diagnosis journey and managing her .

↔️Swipe through to read how early guidance, compassionate doctors, and the support of a peer community helped her navigate her IIH journey, making it feel less isolating.

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

[Alt Text]

Template Description:

A square poster with a dark-teal background featuring a soft molecule-pattern overlay. The IIH Warriors India logo appears in the top-left corner and a QR code in the top-right corner. Centered at the top is the title “The IIH Chronicles.” At the bottom-left is an IIH badge containing a photograph of Hiranyadha surrounded by blue and green butterflies. At the bottom edge are the hashtags .

Body Text Quote:
1 — “For me, IIH came into my life suddenly and taught me to take my health seriously. It's tough, but it also made me more aware of myself. My journey has had its ups and downs—headaches, blackouts, hospital visits, and a lot of initial confusion—but slowly I learned to manage it. Every small improvement felt like a win. I manage it by following my doctor’s advice, taking my medications on time (even the 5 AM ones!), maintaining my routine, avoiding overexertion, and learning when to slow down and listen to my body.”

2 — “The moment that stands out the most is my initial diagnosis. The first doctor I consulted attributed my symptoms to obesity (which I don’t even have) and advised dieting without a proper diagnosis. Within three days, I developed visual disturbances, and during an eye checkup, I suddenly felt dizzy and experienced multiple bouts of vomiting—not at all a good sign. Thankfully, through my brother’s volunteers network, we connected with IIH Warriors India, who guided us to compassionate doctors.”

3 — “This experience taught me one thing: finding the right doctor and guidance early can make all the difference. The wrong doctor at the wrong time can cost far more than just time—it can be dangerous.”

Song Lyrics (appearing on Poster 3):
“తరలిరాద తనే వసంతం తన దరికి రాని వనాలకోసం;
గగనాల దాక అలసాగకుంటే మేఘాల రాగం ఇలా చేరుకోదా…
English Translation:
“Will the Spring itself not come down leaping, to the wilderness that could not reach it?
And so what if a wave cannot rise all the way to the sky?
Won’t the song of the clouds still descend and find its way to the Earth?”

22/10/2025

💙💚 The IIH Chronicles – Neenu Narayanan’s Voice [swipe ➡️]

“On the outside, I may look perfectly normal, but inside I am fighting silent wars — against flare-ups, fatigue from heavy medications, and the heartbreak of turning down simple joys…”
— shares Neenu, reflecting on her .

It’s Invisible Disabilities Week from 19th to 25th October, and her journey of unseen battles with IIH is a reminder that not all disabilities are visible — and you don’t have to see it to believe it.

Swipe to read her voice of courage and purpose ↔️

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

[Alt-text] : Square poster with a dark-teal background and molecule pattern. Top corners: IIH Warriors India logo and QR code. Bottom corners/center: hashtags . Center title: The IIH Chronicles.
Body quote: "In 2021, after my first dose of the Covishield vaccine, I was diagnosed with Idiopathic Intracranial Hypertension, and since then, life has been nothing short of a relentless roller coaster. The constant battle with rising intracranial pressure, chronic headaches, radiating pain from my neck to my shoulders and hands, motion sickness, and cognitive struggles has tested every ounce of my strength.
Yet, even amidst this chaos, I managed to clear the SSC exam and step into the role of a central government employee—an achievement born out of resilience.
On the outside, I may look perfectly normal, but inside I am fighting silent wars against flare-ups, fatigue from heavy medications, and the heartbreak of turning down simple joys like trips & gatherings with family & friends.
But now, I embrace a profound truth—this illness may be unchangeable, lingering for a lifetime, yet it will never dim the fire within me. I am strong enough to stand tall, to fight fiercely for my quality of life, and to hold onto hope that beyond the pain, beyond the struggle, I will continue to rise, unmatched in spirit and unyielding in courage."
Below the quote: a circular awareness frame with IIH ribbon enclosing a photo of Neenu Narayan, alongside the Malayalam lyric with English translation: "എന്നിലെ ഞാൻ മറുകാണുമ്പോൾ,
മരണം പോലും വിടവാങ്ങാറില്ല,
കനൽപോലെ ഉറവിടങ്ങൾ എന്റെ ഉള്ളിൽ തെളിയുന്നു."
When I see myself from inside,
Even death does not say goodbye,
Springs like firelight shine within me."

17/10/2025

30/09/2025

🟦 Yi × IIH Warriors India's Awareness Session 🟩

🧠 Because IIH is

As part of IIH Awareness Month, Young Indians (Yi), IIH Warriors India , and Poornamidam came together for a special session on this silent but serious condition.

📅 Held on: Tuesday, 30 Sept 2025
🕓 Time: 4:00 – 5:00 PM
📍 Platform: Google Meet

🎙 Speaker:
Ar. Kavya Poornima Balajepalli
Founder – Poornamidham & IIH Warriors India | Researcher | Sustainability & Inclusion Advocate

During the session, participants:

Gained insights from Kavya’s lived experiences with IIH

Understood the importance of early diagnosis in managing this disabling condition

Learned ways to be allies for those living with IIH

Engaged in an FAQ round addressing common concerns

Wrapping up September with the amazing YI Vizag Tribe :)
This September, we reminded ourselves — IIH is more than just a headache❗💙💚

✨ We will keep the conversation alive and continue to touch many lives! ✨

21/09/2025

💙 The IIH Chronicles – Loga Dharshini’s Voice 💚

“Every day feels different. Some are happy, others heavy, and nothing is predictable.” Says Loga Dharshini from Coimbatore, reflecting on her journey with Idiopathic Intracranial Hypertension (IIH).

🌸Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH, a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic disabling nature that affects daily life in unseen ways.

⚠️Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist—early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide: linktr.ee/iihwarriorsindia 💙💚

Image Description: Square poster with a dark-teal background and molecule pattern. Top corners: IIH Warriors India logo and QR code. Bottom corners/center: hashtags . Center title: The IIH Chronicles.
Body quote:
"IIH isn't just a medical condition for me—it’s a constant fear of what each day might bring. Every day feels different: some are happy, others heavy, and nothing is predictable. I manage with medicine, meditation, and by striving for a stress-free life, yet there are times I feel alone, especially when my family can't see or believe the invisible symptoms. Living with IIH means carrying both the unseen struggle and the quiet strength to face it, every single day."
Below the quote: a circular awareness frame with IIH ribbon enclosing a photo of Loga Dharshini, alongside the Tamil lyric with English translation: “ஒவ்வொரு காலையும், வாழ்வு புதிதாய் தொடங்கும் சாட்சி.” – “Every sunrise is proof that life always begins again.”

19/09/2025

🟦Session Alert: We are back with IIH—2025 Awareness Meet🟩

In observance of Idiopathic Intracranial Hypertension Awareness Month this September—and building on the collaborative efforts of previous years—IIH Warriors India is delighted to share that this is our third consecutive year co-hosting an IIH Awareness Month initiative with L V Prasad Eye Institute (LVPEI). This session, Silent Pressure: Understanding Idiopathic Intracranial Hypertension, brings together medical experts, individuals living with IIH, caregivers, and other stakeholders to foster deeper understanding and stronger support for managing this invisible, dynamic, and often disabling condition. Our sustained partnership has been instrumental in raising awareness and sparking meaningful conversations around IIH across India.

💡Are you or someone you know experiencing unexplained severe headaches, vision troubles, ringing in the ears, or a persistent pressure inside the head, it could be IIH—a condition that demands attention.

📅 Date & Time: 25 September 2025 | 4:30 PM onward
📍 Venue: LVPEI GMR Varalakshmi Campus, Visakhapatnam

🙌 Unable to join in person?
💻 Attend live on Zoom
Meeting ID: 406 810 2633
Passcode: LVPEI@2025

Why Attend?
• Learn about IIH symptoms and diagnosis
• Explore risk factors and potential causes
• Discover treatment and management strategies
• Understand ways to prevent complications and recurrence
• Take part in a live Q&A with medical experts
• Connect with IIH Warriors India for peer insights and ongoing support

🌸A heartfelt thanks to Dr. Virender Sachdeva sir and the LVPEI team for his invaluable guidance and unwavering support in strengthening this effort year after year.

💙💚 Be part of the conversation—ask questions, share experiences, and help us spread the word: IIH is 💙💚!

18/09/2025

How Rare is IH / IIH?

Idiopathic Intracranial Hypertension (IIH) can affect anyone—regardless of age, race, or gender (yes, it’s not limited to one group).

🔹 Research shows most people diagnosed are women of child-bearing age (typically teens to 40s — this trend could reflect limited sampling and may vary across regions) and individuals who are overweight or obese (even a few extra kilos can increase risk).
🔹 The incidence in the general population is about ~1 per 100,000 (roughly 1 person in a small city).
🔹 Among obese young females, incidence rises to ~20 per 100,000 (around 20 times higher than average).
🔹 Weight is usually not a factor for men or for children under 10 (kids and men can still develop it, but it’s less common).

For secondary Intracranial Hypertension (IH)—where there is an identifiable cause—the true numbers remain unknown (because it can stem from many different conditions and is underreported).

(Source: NORD & https://rarediseases.org/rare-diseases/idiopathic-intracranial-hypertension/)

💙💚 September is Global IIH Awareness Month — let’s shine a light on this rare but Complex condition.

🔗 Follow IIH Warriors India for resources & lived experiences: [linktr.ee/iihwarriorsindia]

[Alt-text] : Black background with a blue-green brain graphic in the center, text reads “How rare is IH/IIH?” with IIH Warriors India logo, QR code, , , linktr.ee/iihwarriorsindia, and .

17/09/2025

How to Manage IH / IIH

🧠 Intracranial Hypertension (IH)
• Treat the underlying cause — e.g., recovery from head trauma or removal of a tumour often resolves IH.
• Medications: carbonic anhydrase inhibitors with diuretics to lower intracranial pressure.

🧠 Idiopathic Intracranial Hypertension (IIH)
• Since the cause is unknown, management focuses on controlling brain pressure, protecting vision, and maintaining overall functioning.
• Medication (first-line therapy): acetazolamide (carbonic anhydrase inhibitor) ± diuretics.
• Weight management: Even a 5–10% reduction can significantly ease pressure and reduce symptoms in case obese individuals.
• Therapeutic lumbar puncture: Temporary relief of elevated cerebrospinal fluid (CSF) pressure.

⚕️ Surgical interventions for severe or vision-threatening cases or symptoms persist
• CSF Shunting (VP/LP shunt) – to continuously drain excess CSF.
• Optic Nerve Sheath Fenestration (ONSF) – to directly protect the optic nerve and preserve vision.
• Venous Sinus Stenting – for select patients with confirmed venous sinus narrowing.

👁️‍🗨️ For Both IH & IIH
• Regular follow-ups with neurological and neuro-ophthalmological care for monitoring and management, plus management of other comorbidities.
• Balanced, nutritious diet, low-salt intake, gentle physical activity, adequate rest, and mental health care.

💙💚 September is Global IIH Awareness Month — let’s spread the word and support those living with this rare condition.

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[Alt-text] : Black background with a blue-green brain graphic in the center, text reads “How to manage IH/IIH?” with IIH Warriors India logo, QR code, , , linktr.ee/iihwarriorsindia, and .

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Hashtags:

16/09/2025

How is IH/IIH diagnosed? 🧠

Diagnosing Idiopathic Intracranial Hypertension (IIH) involves:
• A detailed neurological history and complete physical exam
• Visual examination by an ophthalmologist
• Lumbar puncture (spinal tap)
• Brain imaging studies

If symptoms suggest increased pressure in the brain, a lumbar puncture shows normal cerebrospinal fluid composition but elevated opening pressure, and imaging reveals no identifiable cause, IIH is suspected.

Diagnostic criteria include:
• Signs of raised intracranial pressure or papilledema without another cause
• Opening pressure ≥ 250 mm H₂O measured while lying sideways (lateral decubitus position)
• Normal cerebrospinal fluid composition
• Other conditions causing increased pressure are ruled out

(Source: – https://iih-hub.com/resource/what-is-iih/)

[Alt-text] : Black background with a blue-green brain graphic in the center, text reads “How is IH/IIH diagnosed?” with IIH Warriors India logo, QR code, , , linktr.ee/iihwarriorsindia, and .

14/09/2025

What are the symptoms of IH/IIH?

While there may be many, the most common symptoms shared from lived experiences with include:
• Moderate to throbbing headaches
• Vision loss
• Pulsatile tinnitus (ringing in the ears)
• Nausea
• Visual disturbances
• Sensitivity to noise or light
• Dizziness / lightheadedness
• Balance problems
• Fatigue
• Memory difficulties

🩺 According to Dr. Bradley K. Farris, the most common symptom is often an unbearably painful or frequent headache, sometimes associated with nausea and vomiting that is not relieved by medication. The headache may even awaken the person from sleep.

Other common symptoms include transient altered vision (especially on movement or bending over), tinnitus, stiff neck, back and arm pain, pain behind the eye, exercise intolerance, and memory difficulties.
(Source: NORD)

💬 What are yours? Please share in the comments below.

[Alt-text] : Black background with a blue-green brain graphic in the center, text reads “What is IH?” with IIH Warriors India logo, QR code, , , linktr.ee/iihwarriorsindia, and .

12/09/2025

IIH series

IIH stands for Idiopathic Intracranial Hypertension.

✨ What is Idiopathic Intracranial Hypertension (IIH)?

I – Idiopathic (unknown cause)

I – Intracranial (within the brain)

H – Hypertension (high pressure)

Sometimes Intracranial Hypertension (IH) has a definite cause, such as stroke, a brain tumor, certain kinds of blood clots, or head trauma. But it can also occur without a known cause — this is called Idiopathic Intracranial Hypertension (IIH).

⚠️ Additional symptoms may include tinnitus, malaise, and difficulty performing daily tasks. In the most severe cases of IH, permanent disability and even death can occur.

💊 While there is currently no cure for IIH and consistent effective treatment for chronic cases is still lacking, management remains the key.

📌 (To know more about IH, please read my previous post.)
✨ Stay tuned for more information in this IIH series!

11/09/2025

IIH series

💡 IH stands for Intracranial Hypertension.

What is Intracranial Hypertension (IH)?
It is a serious neurological disorder caused by increased pressure inside the skull.

Intracranial = inside the skull

Hypertension = high fluid pressure

This means the pressure of the fluid surrounding the brain (cerebrospinal fluid or CSF) is too high. Elevated CSF pressure can lead to:
✔️ Severe headaches
✔️ Swelling of the optic nerve
✔️ Tinnitus (ringing in the ears)
✔️ Nausea
✔️ Vision loss or even blindness

Alt-text: Black background with a blue-green brain graphic in the center, text reads “What is IH?” with IIH Warriors India logo, QR code, , , linktr.ee/iihwarriorsindia, and .