_{Nikki - Founders Introduction}

My name is Nikki, I have been diagnosed since January of 2011 but have been suffering since January of 2010. It all started when I was 3 months pregnant in 2009, I had burning pain in my groin and found it difficult to walk. I found pregnancy a lot harder then normal, I was constantly exhausted and found it really difficult. I developed singles in the last month of my pregnancy and never recovered after having my son. In January of 2010 I experienced a high amount of back pain and could hardly walk, I went to my GP who sent me for a MRI and referred me to neurosurgery. In the March of that year I fell over out of the blue due to weakness and paralysis in my legs. I began to experience burning pain in my legs, feet, arms and hands and other neurological problems. I ended up having constant migraines and headaches everyday and vision problems. In July I was discharged from neurosurgery as they didn't feel there was anything they could do and was referred to a neurologist. It toke till December to have visual fields and an LP, in the mean time I had lost sight mainly in my right eye and had been to A&E several times begging them to look in my eyes and to help me, each time I was discharge with not even seeing an eye specialist. In January I had a call from my neurologist to tell me I had Intracranial Hypertension and to start a course of Acetazolamide at 250mg and if I could cope to up it to 500mg. I toke 250mg till March when I saw my neurologist where I told him that I couldn't cope with the side affects so at the moment I'm on 125mg which I'm barely coping with. I had my second LP in May of my opening pressure was 35 and my first was 30. I have a neurological problem on top of IH but the neurologist are still testing for that.

That's all I can think of at the moment as due to IH I have lost memory and find thinking really difficult, I also have speech problems.

So that's me! If anyone wants to talk just message me I'm open to talking to anyone. I have researched into IH as much as possible and open to trying to get awareness out there. My mum also has IH but not as chronic, she's had two LP's in six years.

A very warm to the group Nikki. My story is almost identical to yours, as I started 3 months into my pregnancy. I know how hard it is to manage the illness and a young baby too, as she got older I bought her a nurses outfit and doctors bag set, and when I was ill let her play nurse, so that she wouldn't be frightened or upset, and I have to admit it worked like a charm, because it wasn't until I needed my first shunt 12 years later, that she even realised I had something wrong with me. She often says that she doesn't remember me being so ill from LP's and the headaches, just that I let her be nurse and what fun it was. So don't feel guilty or think that it will have such an impact on your child that they will suffer.

I know the side effects of the Diamox are horrible, I couldn't tolerate them either so they put me on Co-Amilofruse instead, and I've been on that for about 14 years now. In my family they call my speech problems wobble gob, which takes the sting out of it I must admit, but there's times I know it can be embarrassing when you know you've not made much sense.

The best thing I've found to do in the 23 years I've had this, is to take one day at a time, hold on for dear life to my sense of humour, and refuse to give into this silent and most inconvenient illness. Be stubborn Nikki, and we are always here for you, and if you need me to be, I will be at the other end of the telephone for you.

Thank you so much and I must admit I have held on to my sense of humour. I feel that I will only get depressed if I don't laugh at myself and I don't want others to feel awkward around me as I'm still me! My husband is a saint and has brought up our son pretty much on his own as well as being a carer to me. His life has changed just as dramatically as me, his had to learn to run a house and to be honest his still working at it! lol

I have found that reading Catlin's wish to him after a year of my son playing up at school and clamming up has helped a lot for him to accept and he now open up to me and his dad.

That's brilliant and I'm so pleased you have a supportive husband it does make all the difference. My husband has had to take over the running of the house as well as working, and I know I'd be lost without him. I also know though how hard and frustrating it is, to hand over the jobs that you shouold be doing and how inadequate it makes you feel. You should remind people that the illness is just a part of you and now who you are, not only that but that what has happened to you could just as easily happen to them, it's not an illness that discriminates.

On another note scrap the nurses outfit, I don't think your little boy would appreciate that, or for it when he's older!

HaHa I don't think either of them will!