just diagnosed with BIH

hi heather,

My daughter was diagnosed in November and she is only 15 and had been fit and healthy before this so how you got it you probably will never know she also was only slightly overweight she has been put on meds called acetazolamide and since has developed some horrible symptoms or side affects as to which the doctors are not sure, I think it important that you know it might not go away for some time and certainly in my daughters and our familys case our lives have been turned up side down

but i do hope and pray that you are one of the lucky ones that does not suffer.

Hi Karel,

Thanks for the reply. Yeah that medication is what they might put me on. its worth a go because a constant headache is not fun and is stopping me working and going to uni!

I'm trying not to get down about it, there are treatments available to me i just need to find the right one. Sorry to hear about such a bad experience with your daughter. does she have other symptoms as well as headaches? I have only had a headache and no other problem so hopefully i caught it early. I feel well enough just getting anoid with my headaches. Do you mind me asking what the symptoms your daughter has had?

Thanks for your reply

Dear Heather,

Since last we spoke my daughter has been taken off her meds because it caused kidney stones which i must state is rare, so don't panic.

She had to have an op and another next week, and i must say a lot of her symptoms have gone, so myself i don't think her med was good for her.

Before she was diagnosed the only symptom she had was a headache for about 3 weeks and then she developed double vision which alerted us, she also had some mood swings and some disorientation.

So now we need to keep our fingers crossed that she remains good I hope this finds you the same

all the best karel.

Have you visited the support group IIH UK ? It is a support group for sufferers and carers off IIH or BIH. Since I found them it has changed my life. I have met lots of other sufferers and got lots of help and advice. Please take a look at their web site. http://www.iihsupport.org/index.php

Hi Everyone. Sorry to hear of all your stories. I've had the same type of thing happen to me when I was 22, a uryoung mother of a two year old. Let me tell you, this was the freakiest thing in the world. It started with me being so out of breath. I couldnt even go up a couple of stairs without being tired and exhausted. My, gosh then the headaches came full force. Headaches all day long... Only felt at peace when I slept at night. In the days I had to take naps, because I needed rest from all the headaches. I was sick many times throughout the day. What a feeling. This progressed so fast..within one mths time..the last 2 wks of the moths I was seeing double. I had these weird shakes at night when I slept. I even felt the pressure in my eyes.My family finally convinced me to go check it out. I had gone to check out my eyes first. It scared the heck out of me when I was told I had swelling behind my eyes, he sent me right to the emergency. Said they would be waiting. They took me right away. She checked my vision, I had nothing except for what was in front of me. My mother who was with me asked why or how I got this, she said usually when this happens it's a tumor, by then my heart was going full speed. Then she said if nothing showed up on the scans they would do a spinal. Turned out I had way to much in spinal fluid that goes to the brain. How I asked doctor.. How do I treat it? He said by weight loss and pills. In he beginning Iwas on eight pills a day to help get rid of all the water. I was working out 4 to5 days a week, as I didn't want to go blind, and after all I owed it to myself to lose the weight and get healthy. I lost the weight, and got better for myself. You all have the power to do it as well. Good luck! Its not easy. You will get better, give it all you got, and don't give up.