I Have IIH

Welcome kindred spirits!

A Kindred Spirit by definition is "someone who feels and thinks the way you do", which is why we think of you as just that. Here you can connect to people who feel just as you do, have the same worries, fears and experiences. We want you to be confident and happy with this group. We want to help you achieve a better IIH life!

That's why... we'll always be here when you need us.

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We are an IIH Support Group, amongst many other IIH support groups.

So how are we different?

We want to 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.

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 ihaveiih?

We offer you an open-ended membership, so you don't have to worry about your account being deleted, especially if you haven't needed us for a while. From time to time we will encourage you to pop back and see us, 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.

This group is not managed by anyone in the medical profession, but by people closely connected to IIH

This site is a member of WebRing.
To browse visit Here.

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I Have IIH		Topics	Posts	Last Posts
	ANNOUNCEMENTS Please read the announcements made in this section.	5	5	Members suggesti... Sat Aug 07, 2010 7:19 pm Heidi

Just diagnosed with IIH		Topics	Posts	Last Posts
	Newly Diagnosed With IIH 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 longterm sufferers lots of questions and advice on how to deal with it. Introductions	24	141	Hello ...working... Tue Aug 24, 2010 5:44 pm Heidi

Longterm Sufferers of IIH		Topics	Posts	Last Posts
	Ongoing/longterm IIH This forum is for the ongoing and longterm sufferers of IIH. Introductions	17	76	Pregnant with II... Wed Aug 25, 2010 5:16 pm Heidi
	Group Huddle Having a bad day? Need a shoulder? This forum will allow you to share your feelings with sympathetic members, who understand how you feel. On joining the newly diagnosed and ongoing/longterm usergroups, and at the groups request, this forum can be locked for privacy, and will only be accessible to the newly diagnosed and ongoing/longterm usergroups.	14	64	New to the Group... Fri Jul 02, 2010 2:01 pm sf15999

Partners and IIH		Topics	Posts	Last Posts
	IIH Partners 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 usergroups. Introductions, Group Huddle	2	3	Hi I'm Jay Sat Mar 13, 2010 7:15 pm Heidi

Families And IIH		Topics	Posts	Last Posts
	IIH Parents Mum's and Dad's who have children with IIH, can talk about how it has affected your son/daughter, and share your experiences and any helpful advice. This forum is open only to parents and not any other category or usergroup. Introductions, Group Huddle	4	10	Chris's Introduc... Sun Jun 13, 2010 10:08 am sf15999
	IIH Relatives Are you a sister,brother,aunt,uncle,cousin,grandparent of someone with IIH? Come and talk to others, about how IIH has affected them, and you. Just because you don't have this condition, doesn't mean you don't need support or information about living with IIH. Introductions, Group Huddle	3	13	Hi I'm Katie Sun May 02, 2010 12:32 pm Laura

Friends And IIH		Topics	Posts	Last Posts
	IIH Friends Are you a friend of someone with IIH? Do you need to talk with other people in the same situation as yourself? Share your experiences here with other members who have a friend with IIH. Talk about how you have coped with your friends condition and how it has affected your friendship. Introductions, Group Huddle	1	3	IIH Treatment an... Fri Apr 23, 2010 5:44 pm Heidi

Medication Mumbles		Topics	Posts	Last Posts
	IIH and Medication Talk about the medications here, are they working, the side effects and other topics to do with them.	2	8	Pins and needles... Tue Aug 24, 2010 5:47 pm Heidi

Vision Views		Topics	Posts	Last Posts
	IIH and Vision Discuss topics related to visual problems with IIH. Talk about your visual problems or even any worries you may have about it.	6	35	Good News! Tue May 11, 2010 8:46 pm Heidi
	Photophobia Photophobia is basically an insensitivity to light such as sunlight, fluorescent light and incandescent light, flashing images, bright or busy images can also have this affect too, which you may notice more if you use the internet. Sharing stories on how you cope with this problem, and how it affects you, can be a great help. So why not talk to people who understand.	1	5	Pain when someon... Wed May 12, 2010 6:57 pm Heidi

IIH Surgery		Topics	Posts	Last Posts
	Shunts/Venous Stents/Optic Nerve Sheath Fenestration Discuss the surgeries done for IIH or talk about your own. If you have a surgery or procedure coming up, why not add it to the calendar so members can be reminded on the day, and offer support. Other Surgeries	8	50	Do You Have A Sh... Sat Aug 28, 2010 5:18 pm Heidi

Weight Watch		Topics	Posts	Last Posts
	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. Diets, Weightloss Surgery	3	12	Weight-loss Surg... Wed Aug 25, 2010 12:36 am Heidi

	Topics	Posts	Last Posts
Chiari Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. Talk about Chiari here, the effects, what it's like living with it, and the surgery involved.	3	6	My 11 year old s... Tue Mar 30, 2010 7:52 pm Heidi
PCO's Polycystic (literally, many cysts) ovary syndrome (PCOS or PCO) is a complex condition that affects the ovaries. Talk about polycystic ovary syndrome here, what it's like and how it affects you.	1	5	If it's not one ... Fri May 21, 2010 8:51 pm Heidi
Trigeminal Neuralgia This is a nerve disorder that causes sudden shock-like facial pains, typically near the nose, lips, eyes or ears. How does it affect your life? Talk about it here.	1	2	Went to chiro Thu Apr 29, 2010 6:42 pm Heidi
Barometric Headaches Barometric headaches are caused by weather changes, such as rain and storms. When you have IIH it can make it worse by affecting your pressure. Talk about them here.	3	11	Bloomin' Weather... Sun Jun 13, 2010 11:50 am sf15999
Tinnitus The whooshing sound, which can also be a whistle or something like humming, is called Pulse-synchronous tinnitus, is one of the symptoms of IIH. It can have just as big an affect on your life, as the other symptoms, and just as debilitating. Here you can talk to other members about how it affects your life.	2	8	Tinnitus in your... Tue Aug 24, 2010 5:50 pm Heidi
Fibromyalgia Fibromyalgia is a musculoskeletal pain and fatigue disorder, and as yet the cause is still not known. The pain is felt in the muscles, tendons, and ligaments, and these are the connecting tissues and muscles can feel like they have been pulled or over used. Sufferers can experience muscle twitches or a burning sensation. It affects women more then men, and it is a chronic condition with no definite cure. If you have this condition as well as IIH, then come and share your experience with others facing the same problem.	0	0

IIH and Depression		Topics	Posts	Last Posts
	Anxiety and Panic Attacks Panic Attacks are when you breathe faster and your heart rate speeds up. Anxiety is when you have feelings of fear, a worry of something unpleasant, and can lead you into isolation. Here you can talk about these feelings and find ways to help you to cope with them. Suggest ways that have helped you or recommend methods.	3	4	[sub]Symptoms of... Fri Mar 12, 2010 7:08 pm Heidi
	Depression 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.	2	21	Depression back... Sat Apr 24, 2010 9:00 pm Heidi

	Topics	Posts	Last Posts
Special Messages Welcome someone to the Group, wish members Happy Birthday, Happy Easter , Christmas or New Year. Maybe you want to congratulate them on something or add some other greeting. Post them here.	0	0
This and That In this forum you can talk about anything you want, from TV to what you had for dinner.	16	45	Cinema Outing Thu Jun 03, 2010 9:40 pm geri
I saw that! Have you seen a good DVD or film? Then share it with other members.	1	5	I read the book ... Fri Apr 02, 2010 9:21 pm Charlie
Book Club Read any good books, recommend it to other members.	5	15	The best book ev... Thu Jun 03, 2010 6:14 pm Heidi

	Topics	Posts	Last Posts
Jokes Fun forum to share jokes.	10	14	New Maths Sat Apr 03, 2010 11:13 pm Heidi
Games Share fun games here.	12	235	Five word story.... Sat Jun 19, 2010 12:39 pm geri
Website Fun Share fun websites with other members here. Fun Pictures	4	10	Illusion Sun May 02, 2010 4:41 pm Heidi

	Topics	Posts	Last Posts
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. Useful Printouts	17	42	[sub]IIH and Noi... Sun Jun 27, 2010 9:35 pm geri
Informational Links IIH Treatment Information - Lumbar Punctures, Scans, ICP Monitoring, Medication Information,Bloodpatch The IH Research Foundation IH Brainpain Organisation Disability Resources (both UK and America) Your rights as an NHS patient and PALS America's Best Children's Hospitals Children And Hospital - Hospital Life UK & USA Tinnitus, Fibromyalgia, Chiari, PCO's etc IIH and Pregnancy Vitamin A and IIH Patient Information Leaflet- Edema Women's Health Issues ALL LINKS ARE TO REPUTABLE SITES AND ARE FOR INFORMATION AND WILL BE ADDED TO AS TIME GOES ON	24	24	Women's Health I... Sat Jul 03, 2010 2:16 am Heidi
Forum Suggestions This forum allows all members from all categories and user groups to recommend, either a new forum or category they feel is needed on the board, or anything that they feel needs to be on it.	3	12	Proposed 2010 Fo... Fri Aug 27, 2010 11:01 pm geri
How to's on the forum This forum will feature How to's for things on the board. Help How Do I?	11	11	How to use the p... Thu Jun 03, 2010 12:31 am Heidi

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I Have IIH

Just diagnosed with IIH

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Partners and IIH

Families And IIH

Friends And IIH

Medication Mumbles

Vision Views

IIH Surgery

Weight Watch

Related conditions to IIH

IIH and Depression

General Topics

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