HomeLatest imagesRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


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!

View unanswered posts
 

Group Information

 
TopicsPosts
Last Posts
No new posts

   

Rules & Guidelines
News & Board Announcements
Forum Help Polls

45145Poll to Administ...
Fri Jan 17, 2020 8:22 pm
medmisfit View latest post
The I Have IIH Foundation Empty
 

Donations Fundraising and Awareness

 
TopicsPosts
Last Posts
No new posts

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
The I Have IIH Foundation Empty
 

Living with IIH

 
TopicsPosts
Last Posts
No new posts

 

 

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

IH.CONNECT Registry
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
The I Have IIH Foundation Empty
 

Relatives Living with IIH

 
TopicsPosts
Last Posts
No new posts

 

Partners & IIH Parents & IIH
Children & Hospital

134913 yr old son li...
Sun Dec 10, 2017 7:49 pm
Sophiasmom View latest post
The I Have IIH Foundation Empty
 

General Information

 
TopicsPosts
Last Posts
No new posts

 

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
The I Have IIH Foundation Empty
 

General Discussions

 
TopicsPosts
Last Posts
No new posts

 

Diagnostic Tests Topics
Other Conditions Related to IIH
Medication Topics
Diets

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
The I Have IIH Foundation Empty
 

Recommendations For You

 
TopicsPosts
Last Posts
No new posts

 

 
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
The I Have IIH Foundation Empty
Today's active topics
Today's top 20 posters
Overall top 20 posters
Who is online?
Who is online?Our users have posted a total of 7027 messages
We have 1615 registered users
The newest registered user is Steph
In total there is 1 user online :: 0 Registered, 0 Hidden and 1 Guest
Most users ever online was 188 on Wed Apr 07, 2021 2:43 am

Registered Users: None
Users having a birthday today : insidetheburg (39), megank2010 (39), meganMK (39)
Users with a birthday within the next 7 days: Angie_stl (50), Beanstreeter (56), Dan_Robbins (45), darcissd (34), deakinb (31), flinders (47), heathersoworker (49), IH-Survivor (54), jema2676 (48), jkcropper2 (62), Keldan25 (37), kiwichris (65), lilucille (41), louloubell80 (44), Medea (45), mrsford12 (44), pollysprocket (46), Rachael1013 (44), Relli3131 (54), Shannon Snodgrass (48), tshay (45)
Legend : [ Admin1 ][ Admin 2 ][ Partners ][ Parents ][ 16-19 years ][ Relatives ][ Friends ]

New postsNew postsNo new postsNo new posts  Forum is lockedForum is locked
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.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | ©phpBB | Free forum support | Report an abuse | Cookies | Forumotion.com