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About Us
We are a unique IIH Patient Support and Advocacy Charity based in the UK, who are passionate and dedicated to raising awareness for IIH worldwide. We are members of the RARE Foundation Alliance. This is our IIH Support Forum

We are a Registered charity number 1155833. We are also a Charitable Incorporated Organisation.

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.

If you have any enquiries please use the contact button to contact us.

Our circular logo in traditional IIH colours represents the Global IIH community of men, women, children, family and friends in a supporting and positive way.

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.
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!
If you would like to help us to achieve our aims, you can now donate to us

Donate with JustGiving and PayPal

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Group Information

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Meet the Team

All News and Our Announcements

Group Guidelines

Forum Help Info

Mission Statement

Collaborative Partners

3032New book on UPRI...
Fri May 08, 2015 3:42 am
Sophiasmom View latest post

Donations Fundraising and Awareness

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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 Research Foundation in America

"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

Help us to fundraise for OUR Organisation
Get Involved

3867Blog published o...
Sun Apr 12, 2015 5:39 am
Heidi View latest post
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IIH Clinical Trials Information

26A hope in IIH Tr...
Fri Apr 11, 2014 2:48 am
medmisfit View latest post

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 and IIH
Introductions and Updates
Women and IIH
Introductions and Updates

Teens and IIH 16-19
Talk about the problems you face with school college uni etc.
Motherhood/Pregnancy & IIH Share your experience of parenting with IIH
Group Huddle
Got a question? Need to vent or talk about something that's bothering you? Then this is the place for you to do it.
Members Journal/Blog
Get things off your chest with your own journal or post your blog

Alternative Therapy
Talk about other methods you've tried to help you

6134387Inconclusive ope...
Thu Jul 30, 2015 3:31 pm
Sophiasmom View latest post
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Carers Support and Resources


This section has been inspired by Caitlin's Wish Author Victoria Taylor, who's book has highlighted the need for resource information for Carers and Young Carers. Here you will find all the necessary information you need as a Carer, and also a forum in which to talk to one another to share experiences and strategies learned.

44Barnardo's Young...
Sat Aug 10, 2013 12:16 am
Heidi View latest post
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IIH Successes


We want you to tell us about successes you have had since being diagnosed with IIH. They could be anything from going back to work, to telling us if the coping methods and guide sheets we have, have worked for you, and if since treatment things have improved. We want to show that having IIH isn't all doom and gloom, and that your successes will give hope to those newly diagnosed and to those who are struggling. Every success you have will help someone else to achieve the same success based on your experience. So please post.

20135Ashley's Story...
Wed Apr 23, 2014 2:34 pm
Wylee View latest post
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Poll Zone


Answer or create a poll of your own about things relevant to life with IIH

1086Do you ever get ...
Wed Dec 04, 2013 11:13 am
Wylee View latest post
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Meetup and Connect


Ask any of our Admin or Moderators to help you arrange to meet up with members in your surrounding Areas. Make sure you also state which country you are in.


1039Are there any me...
Mon Nov 04, 2013 10:29 am
Sophiasmom View latest post

Partners and IIH

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Partners of IIH sufferers are often overlooked, and often have to put aside their feelings when it comes to living daily, with an IIH sufferer. This forum is for the use of partners only and is not open to any of the other categories or user groups. 



Tell your story 


Group Huddle

Having a bad day?

Got a question?

Share it


411Victoria - Autho...
Sun Jun 02, 2013 2:56 pm
Wylee View latest post

Families And IIH

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Mums and Dads, who have a child with IIH, can talk about how it has affected you and your son/daughter, and share your experiences and any helpful advice. This forum is open only to parents and not any other category or user group.



Tell your story



Share experiences



Share experiences


Group Huddle

Having a bad day?

Got a question?

Share it

22138Our daughters II...
Sat Apr 25, 2015 8:06 pm
Heidi View latest post

Friends And IIH

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Are you friends with someone who suffers with IIH? It's important for you to understand what they are going through and just as important for you to have as much information as you can to help support them. Share your experiences with others and ask them how they help support their friend.



Share your story 


Group Huddle

Having a bad day? Got a question?

Share it


828advice needed ...
Wed Jul 23, 2014 4:28 am
Heidi View latest post

Medication Mumbles

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IIH and Medication


Talk about IIH medications here, are they working, the side effects and other topics to do with them.

48314When to take pai...
Fri Feb 06, 2015 10:11 am
jtjb01 View latest post

Vision Views

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IIH and Vision


Discuss topics about visual problems with IIH.

Working with us to give you greater support are the RNIB. They provide the following services; Advice, Emotional Support, Eye Health Information, Legal Rights, Talking Books and Talk and Support

You can call the RNIB Helpline 0303 123 9999 The helpline is open Monday - Friday 8.45 - 5.30

or email helpline@rnib.org.uk adviceservice@rnib.org.uk

Also working with us are the Partially Sighted Society.

They have a Low-Vision therapist who is on hand to offer help, advice and training in the choice and use of low-vision aids (which are available from the Partially Sighted Society) as well as orientation and mobility training where necessary.

Also working with us the Blind Children UK

Blind Children UK supports families of children visually impaired from birth through to the end of full time education. They have five key services, Family Support, Early Diagnosis and Information, Education support, IT support and advice, Recreational Activities and CustomEyes books.

For information about their services contact services@blindchildrenuk.org or call 0800 781 1444

32153Chances of blind...
Mon Jul 27, 2015 12:43 am
Heidi View latest post

IIH Surgery

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IIH Surgery and Information

http://i24.servimg.com/u/f24/13/54/06/56/surgeo11.pngHelp and Advice about VP, VA and LP shunts, Venous Stenting and Optic Nerve Sheath Fenestration and Sub temporal Decompression. Includes important information on: Shunt infections, Blocked shunts and  Shunt over-drainage

64374A shunt can caus...
Fri Jul 31, 2015 12:26 pm
Wylee View latest post
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IIH Procedures


Also includes information on Lumbar Punctures, scans, tests and procedures.

27117Styloidogenic ju...
Thu Oct 24, 2013 3:49 pm
Sophiasmom View latest post

Weight Watch

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Weight Issues


Weight is often said to be one of the main factors of IIH. This section will enable you to talk about any issues you have with weight and weightloss, including diet, weightloss pills and surgeries. Share your worries and frustrations with other members who understand.

1266Anyone tried Kem...
Yesterday at 2:12 pm
laynuh View latest post

Related conditions to IIH

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Other conditions common with IIH

http://i24.servimg.com/u/f24/13/54/06/56/medica13.pngPolycystic Ovary Syndrome (PCOS or PCO), Chiari Malformation (Arnold Chiari), Trigeminal Neuralgia, Tremors, Barometric Headaches, Tinnitus/Pulse-synchronous Tinnitus, Fibromyalgia, and Spontaneous Intracranial Hypotension are all other conditions often related to IIH. If you have any experience of these conditions, come and share them with other members and how you deal with them.
30128New finding with...
Thu Oct 02, 2014 8:07 am
BananasMom View latest post

IIH and Depression

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Depression can strike anyone at any time, and with it comes extreme feelings of sadness, that just don't go away. It will affect every aspect of your life, the way you think, and the way you feel and it can last for weeks and even months.

It affects a person psychologically, physically and socially. In this section we will help you to recognise the symptoms of depression, and provide you with information. You can also discuss your own experiences as well as share with, and support other members.

1574Depression back...
Wed Jul 10, 2013 2:18 am
Heidi View latest post

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

Working with Disability/Illness


  A-Z of Headaches Commonly Experienced with IIH 

Help With Health Resources

NHS Patient Support & Advice Services in the UK

  Children Health  Resources and Information
  Other Helpful Organisations   Medical Information Articles Related to IIH

105106Global Genes Too...
Sat Jan 17, 2015 10:44 am
Heidi View latest post
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IIH Helpful Coping Methods


Suggestions and advice on various subjects to do with IIH

Feel free to suggest methods that have helped you to cope with daily life with IIH, from housework to education. We all have found ways to adapt to everyday life, share these with other members.

2675Mood Lifter
Fri Nov 16, 2012 7:23 am
sammyjo View latest post
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Useful Guides and Printouts


Here you can find handy guides that we hope you will find useful in having a better life with your IIH, they are methods that we have used that have helped us to have as normal a life as possible.

Our Information and Education booklets are

 Information booklets from Partner Organisations
The Brain and Spine Foundation
 Rare Disease UK

3030IIH Information ...
Thu Jul 10, 2014 7:22 am
Heidi View latest post
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Who is online?Our users have posted a total of 6423 messages
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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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