Hey guys!

My name is Melissa and I am 27 years old, and I have been diagnosed with Intracranial Hypertension for approximately one year now.
My diagnosis came following a stroke and the discovery of a blood clot on my brain. I had to undergo four lumbar punctures before the doctors could conclusively state that I had IH, and as my eyesight was affected, after tests I was diagnosed with papilledema also. They suspected the cause was the fact that the blood clot was taking up so much space in my cranium, that there wasn't enough room for everything else, hence the pressure headaches. Ouch!

I had three failed courses of tablet therapy. They tried to control the pressure with Acetozolamide, which had no effect on me whatsoever. I was given topirimate (Topamax) but I suffered severe side effects, and I was then given Bendroflumethiazide which was a slight help but not a complete solution. I was lucky enough to be put in the care of an amazing neurosurgeon at Hull and East Yorkshire Hospitals, Mr Pathak. I was offered LP shunt surgery, which I am eternally grateful for because it has been an absolute life saver for me. I was made aware that shunt surgery is hit and miss, it might work, it might not. My first surgery was successful for one week, before my shunt became blocked. It was backwards and forwards to the hospital before I was booked in for a second surgery a couple of months later and that shunt is currently ( ) working well! Also, my papilledema has disappeared.

My surgery was complicated by the fact that I am on numerous other medications for the treatment of my epilepsy, my blood clot, and also depression.

Believe it or not I am a very happy person, I am a very positive person! Despite everything I have been through, I am alive and I have been so lucky. I strongly believe that these experiences are chapters in my life which I can use to make my resolve and my personality stronger.

Also, due to the fact that despite the serious conditions I have been through, I have survived, and I truly believe that I am here for some reason. Usually when people hear of my ailments, they are surprised that I am alive. Quite honestly, so am I!

In all honesty, since my diagnosis, I have done a lot of research about IH and I have met a lot of amazing people, some of whom use this website. I have found this website to be so helpful and a great source of information and support. So I have decided that when I am fully recovered, I am going to dedicate my life to raising awareness of brain ailments, and especially Intracranial Hypertension. There is not enough awareness and there needs to be more, and I would love to be one of the people who contributes to a more knowledgeable world.

for reading and I look forward to meeting everyone and making more friends here!

Take care! xox

Thank you so much for posting your introduction. I know you have been on quite a journey since your diagnosis but you have shown that with determination and a positive attitude you can get through those difficult times, especially when you have the right information and support.

This is why we are determined to become an international foundation, so that we can help everyone, everywhere affected by IIH, and above all to help with funding and awareness when possible.

Thanks Heidi!

Thank you for inviting me into the community and I am determined to help you as much as I can to reach your goals of making this organisation an international one. The more help and support we can offer, the better

Lets help this community grow!