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About Us
What do we do? We help you to adapt to life with IIH, by providing you with practical advice, help and the information you need to understand and live with this condition. IIH doesn't discriminate and neither do we, so wherever you are in the world, we can help you.
How can we do this? We too have experience with IIH, we have found ways to live with this condition and we want to share them with you.

What can you expect from I Have IIH? We offer you constructive advice based on experience and success. Although we do offer information on the various topics from authorities on IIH, we primarily aim to help you to achieve a more positive and productive life with this condition. We don't put a time limit on your membership, and actively encourage you to keep coming back, just to let us know how you've been getting on, as well as to share your support, coping strategies and friendship with other members.

We are members of the RARE Foundation Alliance.

Our circular logo: Blue for integrity/perseverance, Green for endurance/positivity and Yellow for optimism/challenge representing men women and families living with IIH..

By definition a "Kindred Spirit" is someone who "thinks and feels the same way as another person". Having a condition such as IIH can make you feel isolated and misunderstood, but not here. Here you can connect to people who know how you feel and what you're going through. If you have any enquiries please use the contact button to contact us.

We know you want a better IIH life and we want to help you achieve it.
That's why...
...we'll always be here when you need us!

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45145Poll to Administ...
Fri Jan 17, 2020 8:22 pm
medmisfit View latest post
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Donations Fundraising and Awareness

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Fundraising, Research and Raising Awareness for IH

Fundraising, Research and Raising Awareness for IH

You can help the IH Research Foundation with valuable research by simply clicking on the donate button and donate.

"The IH Registry is run in partnership with Oregon Health & Science University in Portland, Oregon. It is the first and only patient registry of its kind for chronic intracranial hypertension in the world. It represents the largest collection of medical data on chronic IH patients ever compiled and continues to grow. The Registry is international in scope, with patients enrolled from 26 countries; it also welcomes inquiries for collaborative research from researchers outside the US.

It is open to any patient with a confirmed diagnosis of idiopathic or secondary intracranial hypertension, regardless of nationality or country of residence and it is FREE. Any qualified physician researcher or basic researcher from any country in the world is invited to use and receive de-identified medical data once they have confirmed qualifications and receive IRB approval for the research project. The IHRF communicate with Physicians and Researchers globally." The IH Research Foundation

If you are in the UK you can help fundraise for the I Have IIH Foundation by visiting our main website

4381Rare Disease Day...
Mon Feb 11, 2019 10:33 pm
medmisfit View latest post
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Living with IIH

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Pseudotumor Cerebri (PTC) Benign Intracranial Hypertension (BIH) Idiopathic Intracranial Hypertension (IIH) Secondary Intracranial Hypertension (SIH).

You'll all have one and the same condition. It is known mainly as the latter one as there is no known cause, hence the idiopathic. Confusing we know! If you've just been diagnosed you can get together here with others to talk over how you feel about it, and ask the long-term sufferers lots of questions and advice on how to deal with it.

Men & IIH
Introductions and Updates.
Teens & IIH
Talk about the problems you face.
Women & IIH
Introductions and Updates.

Pregnancy & Motherhood with IIH
Share your experience of parenting with IIH.
Your Successes
Every success you have will help someone else and give them hope. So please post.

Group Huddle
Vent or ask a question of other members.
Alternative & Holistic Therapy
Talk about other methods you've tried to help you.
A-Z of Headaches Commonly Experienced with IIH

We hope you’ll consider joining the IIH.Connect registry it
will help you to find IIH Specialists in your Area.

Benefit Resources

Helpful Coping Methods

Useful Booklets and Guides

8055320Life with IIH
Thu Jan 02, 2020 4:04 pm
imme View latest post
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Relatives Living with IIH

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Partners & IIH Parents & IIH
Children & Hospital

134913 yr old son li...
Sun Dec 10, 2017 7:49 pm
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General Information

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Medications used to treat IIH Types of Surgery for IIH
Information & Resources regarding Vision Other Conditions Common with IIH
Diagnostic Tests for IIH Depression Anxiety & Panic Attacks

70130Lumbar Drain Tes...
Tue May 29, 2018 2:28 pm
medmisfit View latest post
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General Discussions

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Diagnostic Tests Topics
Other Conditions Related to IIH
Medication Topics

Vision Topics
Depression Topics
LP Shunt Topics
VP & VA Shunt Topics

Optic Nerve Sheath Fenestration (ONSF)
Venous Stenting & Sub Temporal Decompression Topics

1691174Hearing loss
Tue Mar 27, 2018 2:19 am
Sophiasmom View latest post
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Recommendations For You

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Useful links to the topics and websites. ALL links are from reputable sources only. We are not responsible for the content on these websites, they are provided ONLY for information. It is still important to consult a medical professional.

Benefit Resources Help with Health Resources

Medical Articles Relating to IIH More Help Resources

9494ANA: Ask Kids wi...
Fri Oct 21, 2016 12:00 pm
BananasMom View latest post
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DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
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