well my neurology visit didn't go to plan. After three glorious weeks of no headaches and gaining 90% of my vision back, they have told me I have to come off the steroids. Despite the fact they have made me so unbelievably well, they believe they will long term increase my ICP and make me ill. They are going to decrease the steroids slowly and do an LP every 2/3 weeks to help with the pain that they believe is inevitable as the steroids drop.
As I can't have diamox or furosemide because I'm allergic to sulfomides and topamax is making me miserable, it looks like I'm out of options. They are talking shunts or trying to make a permanent tear through repeated LP's.

I am finding it so difficult to imagine going back to being so ill again after having my life back again. I've been so well and now I feel like someone has pulled the rug from under me.

Its so hard to explain to people around me - especially when I'm well at the moment. Nobody gets it. I just keep hoping that I've gone into remission and that I'll come off the steroids and stay well. The neurologist says that's highly unlikely but I can live in hope.

IIH has this horrible way of isolating you and making you feel so lonely - its only places like this that anybody understands. Sorry to offload

Im sorry to hear they are taking you off something that has been working so great for you. Its so difficult to understand the decisions our drs make for us sometimes, hopefully they know what they are talking about. I hope that in the end you are in remission when all is said and done. We can have hope and your dr should have hope for you too!

This disease is very lonely, I have lots of family and I mean lots, a total of 20 aunts and uncles, 4 parents, 5 siblings, 4 best friends nd a few other friends and my husband, not all of them understand or even seem to care. There are only a hand full that I truly believe and understand what I'm going through, and that makes me feel so alone. This site has helped me alot since I have joined. I myself am going through treatment trouble with my dr, and with him it's his way or no way, and doesn't seem to want to listen to me.

Again I wish the best for you and always remember we are here for you, and you are not alone

~Nichole

I'm so sorry! I know you worked really hard to convince the doctors to extend your steroid use & was hoping they'd find it was a viable option. I know absolutely nothing about the long term affects of steroid use, but wonder if IHRF would be able to give you any insight..you might try sending them an email.

I am glad they're at least stepping you off the steroids slowly..hopefully you won't have such intense symptoms this time. I really hope you're in remission, but if you start having symptoms we'll be here to support you. If you're concerned, I'd start keeping a log..it may help you track any changes.

I know it's completely disheartening..I can only imagine how frustrated & terrified you must feel. All I can say is try to remember how good you feel now & know that it's possible. You can live a normal life with the right treatment..we're all hoping you won't need it!!!

Take care, and keep us posted!

Thanks medmisfit - that's a great idea! I will drop them an email.

Its like living on the edge now the dosage is dropping - I'm just looking and waiting for it to start coming back. So far so good. Have gone from 8 a day to 6 a day and I'm sill headache free. My eye's are burning today so I guess that's not a great sign. The pap had cleared off with the steroids.


I'm having a good read up on shunts this weekend. Never thought I'd hear myself say that.....

when I wean my prednisone it doesn't hit me until the second day I'm completely off, usually, unless something triggers me like stress or chemical exposure.

Hey Penny, how are you feeling? I hope the good feelings are still there.

hi Zoe;
I just wanted to let you know that I am now on prednisone 5mg twice a day and I seem to be doing well. my neuro said this dose would not be associated with all those bad long term side effects. maybe you can ask your doc about maintaining you on a low dose like this?
Deb

Hi people,

I am down from 8 tablets a day to 5 a day. All OK at the moment. One or two headaches but nothing like before. Fingers crossed it will stay that way as the dosage drops. Wylee - thanks for asking
Deb - Thanks so much for that - I will mention it. Am going in for an LP in the next week or so. I am intending to discuss the steroids again then.

Glad to hear you're doing ok..thanks for the update!

I'm hoping things are still going well with decreasing your dosage!