HI TO EVERY ONE MY NAME IS BEV AND I HAVE LIVED WITH IIH FOR 12 YEARS. TO GIVE A QUICK RUN DOWN AND AS I TELL MY TALE OF THE LAST YEARS WITH IIH PLEASE REMEMBER WE ARE ALL INDIVIDUALS WIT THIS CHRONIC DISEASE. AS I HAVE ALWAYS BEEN RELUCTANT TO TELL MY TALE BUT I REALLY DO NEED TO SPEAK TO OTHERS AND ASK THE QUESTION IS THIER ANYBODY OUT THERE THAT IS AT MY STAGE OF THIS ILLNESS. WELL I HAVE HAD HUNDREDS OF LUMBER PUNCTURES;TWO SHUNTS, THE LUMBERPERITERNEAL AND THE VENTRICULAR ONE BOTH FAILED DUE TO VENTRICULITIS AN INFECTION OF THE BRAIN, WHICH MEANS I CAN NEVER HAVE ANOTHER SHUNT AS ITS TO DANGEROUS BECAUSE YOU NEVER GET RID OF VENTRICULITIS. I AM KNOW SEVERLY PARTIALLY SIGHTED AND HAVE EPILEPSY PLUS ALL THE USUALLY STUFF HEADACHES!!! THAT GO WITH IIH . I AM ON THE HIGHEST DOSAGES OF DIAMOX AND TOPRIMATE PLUS FRUSIMIDE MY PAIN KILLER IS KNOW MORPHINE. SO THATS ME BUT PLEASE IM NOT A MOANER AND HAVE HAD SOME AMAZING EXPERIENCES TOO AND HAVE A GREAT SENSE OF HUMOUR .I JUST NEED TO KNOW IF THERE ARE ANYBODY LIKE ME WHO IN A WAY HAVE COME TO A WALL APART FROM MAXIMUM MED? PLEASE AS I HAVE FOR YEARS BEEN TO SCARED TO GO ON TO WEB SIGHT BECAUSE I FELT I MIGHT SCARE OTHERS LIKE I SAID WE ARE ALL DIFFERENT. PLEASE GET IN TOUCH ANY ONE I WOULD LOVE TO GET INVOLVED MAY BE WITH THE BOOK IDEA BEVS

Hi Bev, welcome to the group!!! I'm glad that you've chosen to share your story. It is important to remember that IIH affects everyone differently and there are varying degrees to symptoms/treatments/outcomes. I can only imagine what you've experienced, but I'm sure there are members/guests that have similiar stories and appreciate that you've reached out to them. If you are interested in contributing to the book, you can email your story to brainpainstories@gmail.com.

As far as the site, please feel free to share or ask anything..we'll do our best to answer your questions, find resources, or support you any way we can. I'm sure as you look through the posts, you'll find members that share at least some of your struggles. You can also PM any of the moderators or admin w/ questions or concerns anytime.

I know it isn't always easy, but attitude makes such a huge difference in managing this disease..I'm really glad you've been able to keep your sense of humor, and look forward to getting to know you better.


Julie

Hi Bev and welcome to the group. I have had many shunts the LP shunt, LP subcutaneous shunt and I still have a VP shunt. I also have bilateral sub temporal decompressions. Like you I've had a huge amount of LP's, I've also been in a coma with Ventriculitis (it was treated with very strong antibiotics and I had another VP shunt 3 months later), and I've had Meningitis, Staphylococcis Aureus and MRSA numerous times. I also still take Co Amilofruse.

I've had IIH now for coming up to 24 years, I am partially sighted as I have tunnel vision now caused by peripheral loss, and I have no depth perception. I had a good even run with my IIH for the first 12 years being managed with LP's and Diamox.My mobility is not as good as it was because the LP shunts damaged the nerves is my back, so I have to use a stick, as well as for my sight.

Here is my story and I hope it reassures you that you aren't alone with your experiences. Heidi

THANKS FOR WELCOMING ME!! I ALREADY FEEL NOT SO ALONE.THANKS HEIDI FOR SHARING YOUR STORY IM NOT ALONE IN THIS STRUGGLE!! I TO HAVE NERVE DAMAGE IN MY BACK AND WALK WITH ASTICK WHOM I CALL CHARLIE, DONT ASK WHY ITS JUST MY SENSE OF HUMOUR ! MY LEFT SIDE IS WEAK DUE TO A COUPLE OF BRAIN BLEEDS BUT HEY HO LIKE YOU IM STILL HERE AND I CALL MY TUNNEL VISION MY WINDOWS! I AM LUCKY THOUGH AS THE CORNISH BLIND HAVE BEEN FAB, SO IF ANYBODY WHO IS IN CORNWAL AND IS HAVING PROBS WITH THERE SIGHT GET IN TOUCH WITH THE CORNISH BLIND THEY ARE SO BRILL. SO THANKYOU SO MUCH AGAIN ITS LIKE A RELIEF VALVE HAS GONE OFF ,FEEL QUITE TEARFULL IN RELEIF THANKYOU I WILL SEARCH AROUND THE SITE WITH A LITTLE MORE CONFIDENCE BIG HUGGLES BEVS :flower:

Hi Bevs! Welcome to the group! I see you've already been able to connect with someone here who has been through some of what you are going through, and that's just awesome! What I love best about this site is the feeling we get that we are no longer alone. *big hugs* I look forward to getting to know you better here in the forums.

Bev,

I'm glad that you have already found someone to connect with in Heidi! Thank you for sharing your story with us, I hope they find a solution for you soon xx

Hello Bev. I would also like to add my late but heartfelt

Feel free to visit us whenever you would like. Grab a cup of tea (is that too much on the stereotyping??) plop down in an easy chair and have a chat, or a rant and rave, or a good cry. As the others have already said, we are a very diverse group, but that makes it even better because chances are you will find someone who can help, just as Heidi has done. It feels so much better knowing that there are others who are available to be there for you, who understand.