
i have iih A group dedicated to building a firm support structure with coping strategies and techniques, to help people with IIH. Let us help you to have a better IIH life! |
Welcome Guests and New Members |
| | 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.
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 |
I Have IIH | Topics | Posts | Last Posts |
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 | 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 |
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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 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 |
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 | 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 |  | 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 |
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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 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 |
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 | 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 |  | 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 |
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 | 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 |
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 | 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 |
  IIH Surgery | Topics | Posts | Last Posts |
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 | 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 |
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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. Diets, Weightloss Surgery | 3 | 12 | Weight-loss Surg... Wed Aug 25, 2010 12:36 am Heidi |
 Related conditions to IIH | Topics | Posts | Last Posts |
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 | 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 |  | 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 |  | 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 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 |  | 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 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.
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 IIH and Depression | Topics | Posts | Last Posts |
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 | 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 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 |
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