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| Welcome! | We are the Official International IIH Support Organisation for the IH Brain Pain Organisation. Together we are passionate and dedicated to raising awareness and funds for the IH Research Foundation. We are in Partnership with the Brain and Spine Foundation and Rare Disease UK, who we also strongly advocate and encourage support for.
What do we do? We are a unique group based in the UK, who help you to adapt to life with IIH, and give you back your confidence and wellbeing by teaching you how to focus on the positive sides of living with this condition, wherever you are in the world.
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 dont 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 self funded and do not host or receive funding from any advertising. Instead we encourage you to donate to the organisations we advocate for. 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!
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Disclaimer |
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Group Guidelines
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Help
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Mission Statement
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Suggestions |
| 23 | 26 | SOCIAL SECURITY ...
Tue Jan 10, 2012 7:29 am
Heidi  |
 Donation Fundraising and Awareness | Topics | Posts | Last Posts |
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You can help the IH Research Foundation and/or the Brain and Spine Foundation with valuable research by simply clicking on the donate buttons and donate.
We also provide you with information about what you can do to help with fundraising. The IH Research Foundation in America  The Brain and Spine Foundation in the UK 
| 8 | 11 | I Have IIH Parti...
Tue Jan 24, 2012 7:34 am
Heidi |
Living with IIH | Topics | Posts | Last Posts |
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 Pseudotumor Cerebri (PTC) Benign Intracranial Hypertension (BIH) Idiopathic Intracranial Hypertension (IIH)
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.
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Introduce Yourself Tell your story |
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Group Huddle
Having a bad day?
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Members Journals
Keep a journal |
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Alternative Therapy
Other helpful methods |
| 195 | 1039 | Acupuncture
Today at 12:20 pm
vp5109 | | Answer or create a poll of your own about things relevant to life with IIH
| 8 | 41 | Women and IIH
Fri Jan 13, 2012 5:53 am
xmelissax |
Partners and IIH | Topics | Posts | Last Posts |
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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.
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Introductions
Tell your story |
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Group Huddle
Having a bad day?
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| 4 | 17 | Shivang
Tue Sep 20, 2011 8:23 am
Heidi |
Families And IIH | Topics | Posts | Last Posts |
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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.
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Introductions
Tell your story |
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Relatives
Share experiences |
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Parents
Share experiences |
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Group Huddle
Having a bad day?
Share it |
| 8 | 30 | Mom wants to kno...
Thu Jan 12, 2012 2:20 pm
medmisfit |
Friends And IIH | Topics | Posts | Last Posts |
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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.
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Introductions
Share your story |
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Group Huddle
Having a bad day?Share it |
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| 1 | 6 | IIH Treatment an...
Tue Dec 20, 2011 7:55 am
xmelissax |
Medication Mumbles | Topics | Posts | Last Posts |
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|  Talk about IIH medications here, are they working, the side effects and other topics to do with them.
| 11 | 65 | What about Topir...
Fri Dec 30, 2011 12:37 am
xmelissax |
Vision Views | Topics | Posts | Last Posts |
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|  Discuss topics about visual problems with IIH.
| 16 | 89 | Pain behind both...
Fri Jan 13, 2012 5:03 am
shez |
Weight Watch | Topics | Posts | Last Posts |
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|  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.
| 7 | 40 | Help! I'm embark...
Fri Dec 30, 2011 12:04 am
xmelissax |
Related conditions to IIH | Topics | Posts | Last Posts |
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|  Polycystic Ovary Syndrome (PCOS or PCO), Chiari Malformation (Arnold Chiari), Trigeminal Neuralgia, Barometric Headaches, Tinnitus/Pulse-synchronous Tinnitus and Fibromyalgia, are 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.
| 20 | 71 | How would you de...
Tue Jan 03, 2012 2:00 pm
JoJo123 |
IIH and Depression | Topics | Posts | Last Posts |
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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.
| 9 | 39 | Pregnancy
Sun Nov 20, 2011 11:36 am
Heidi |
Recommendations For You | Topics | Posts | Last Posts |
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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.
| 38 | 39 | Overcoming Probl...
Tue Jan 24, 2012 8:45 am
Heidi | | 
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.
| 13 | 48 | IIH and Photopho...
Fri Dec 30, 2011 4:38 am
xmelissax | | 
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.
I Have IIH Medication log
I Have IIH Symptom log
I Have IIH Housecleaning log sheet
I Have IIH Guide - Informing People About Your IIH
I Have IIH Guide - IIH - A New Way of Life
I Have IIH Guide - Talking To Your Doctor About IIH
I Have IIH Guide - Talking To Your Neurosurgeon About IIH Surgery
Information booklets from Partner Organisations The Brain and Spine Foundation Rare Disease UK
| 24 | 24 | Experiences of R...
Wed Jan 25, 2012 9:48 am
Heidi |
| Who is online? |  | Our users have posted a total of 2214 messages
We have 501 registered users
The newest registered user is katherine68 | In total there is 0 user online :: 0 Registered, 0 Hidden and 0 Guests :: 1 Bot
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Users with a birthday within the next 7 days: amme5832 (27), ang02 (36), cath278 (51), Sally86 (26), Willow (38), xashleylizx (24) | | Legend : [ Admin1 ] [ Admin 2 ] [ Moderator ] [ VIP Members ] [ Partners ] [ Relatives ] [ Parents ] [ Friends ] [ Members Journals ] |
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