HI thankyou for taking the time to read about me

I am an old hand with IIH and wanted to join the forum so that hopefully I may help others..

so here goes about me....

I am text book IIH in fact I think they wrote the medical book about me ... I had just turned 30 when I was finally diagnosed in 2007 with IIH (of child baring age overweight blah blah blah) following a routine optician appointment. I had put off and put off this opticians appointment for a few weeks as being a teacher and it was the end of term just before xmas I thought that i was run down tired (headaches) etc etc . so you can imagine my shock when i was told to get my big butt up to A& E immediatey on a Saturday afternnoon due to papaeademia (can never spell it)......... spent the next 3 weeks in hospital (over xmas) while they tried to find out what was wrong with me - not a brain tumor thankfully ....

3 lumber puntures later (all over 50!!) they finally said that I had this condition called Intercarial Hypertension.... then discharged me telling me to lose weight if I felt bad call my neurologist and I could have another LP. no medication at tha point

Off I went and went about and researched it. I know more than my GP does (as most of you probably do !!)

since then I have had 18 months of lumber punctures every 6 weeks
3000 mg of diamox a day
200mg twice a day of topamax (topiamtate)

I was diagnosed with a blood clotting disease called Factor V Leiden Mutation (They think may contribute to the fact the fluid my not drain)
I then in 2009 had my first LP shunt fitted
- it then broke
- it was replaced
- it got infected and spent 3 week at KIngs college hospital on a drip
- it got removed -
- new LP sunt put in in 2010 and WENT INTO REMISSION cheer

where I am at now.......... valve in current LP shunt broken and waiting for a operation (hopefully in the next few weeks) to replace it currently on 200 mg of topamax a day
........ :frustrated


well thats me still working full time as a teacher. I hope that I can help answer questions as I feel that I have experienced most things with this condition

xx thanks for looking at my rambling xxx

Hi Gemma and welcome to the group. Crikey! You've really been through the mill, and despite that managed to go into remission, which is fantastic!! I absolutely love your attitude and feisty spirit, which comes across in your post. You can definitely help lots of our members with your experiences and that's what finding a better life with IIH is about. We think of it like a pay it forward system.

What a shame your shunt broke at a time when you are doing so well, and I will keep my fingers crossed that it doesn't set you back. It's always great to hear from a member that they are still working, especially when they have a shunt, because it is so reassuring for the others. Positive posts after remission and being shunted aren't always posted, so members don't get to read the positive and successfully treated's posts.

Thank you so much for joining and we're glad to have you, and look forward to getting to know you a lot more.

Heidi

Hello Gemma, and a warm welcome

We for sure need your input here. I have only had my shunt since Nov 1st, still a newbie and still trying to get the valve set right and the right meds too. I am hoping that I will be able to go back to work too.

Hi Gemma! Welcome to our group! We're so happy to have you with us. It sounds like you have been through so much with IIH already. You are a strong woman! I'm sure you can be a valuable source of support to others here who are new to dealing with this condition. I hope that you are able to get your shunt valve fixed real soon! *hugs* Looking forward to knowing you better.

thanks for all the welcomes

As I have said probably been there done that (not to sound arrogant) so hopefully I can answer most question with regards to how it affected me from the meds to high and low pressure etc

thanks for welcoming me I just hope this other people get it easier thanI had it as most of what I know now I have done by myself xxxx

getting my shunt valve replaced next week :well done