I just was re-diagnosed with IIH last Tuesday. My original diagnosis was in 1998 and after many shunt surgeries, the condition resolved ( or so I thought). In 2010 I was doing so well that my shunt was removed. Last Tuesday I was admitted to the hospital after a lumbar puncture and a finding of papplidema . It has been a rough week struggling with the severe headaches and the nausea... I am so mad that after all these years it has reoccurred. I am now facing another shunt surgery and having to live with this for the rest of my life. I just don't understand, as I am sure many of you don't.

It is nice to have a place to share my thoughts and concerns.

Thanks,

Tara

Hello Tara and a very warm welcome to our group. I am so sorry that your remission has ended, and that you are having to have another shunt after all this time. Unfortunately this is the nature of the beast, we never know how long a remission period can last. We have a member who had a 20 year remission, and felt exactly the same as you do now.

It seems to depend on your trigger how long your remission can last for. If it is triggered by weight, you can lose the weight and enter remission, but if you put the weight back on, it can return.

It is very difficult to understand why some reach remission and others don't, even if the trigger is the same, which is why this is an incurable disease, and doctors shouldn't be saying the IIH is gone when we enter remission, giving the impression we're cured. It is a false impression, which is why when it does return our emotions explode all over the place.

I have been in this position myself too. I went into remission for about 4 years, but then when it returned I kept being told it was migraine, until it deteriorated and I needed a shunt. I feel your frustration and anger because I have been there. We're all here for you for whatever you need, even if it is to have a much needed rant.

Heidi

Hi Tara, and welcome to the group! I'm also very sorry to hear you're IIH has returned. I actually had a brief period of IIH initially, then went into remission for a year or so. I'm pretty sure my IIH was brought back by my hysterectomy, and it came back w/ a vengeance. The meds didn't help the second time and I ended up w/ a lumbar shunt. It is very disheartening and I'm sorry you're having to go through it! Keep us posted and let us know if there's anything we can do to help.

Take care,

Julie

Hello Tara. I would like to add my

So, so sorry to hear of your nightmare returning. As Heidi said, maybe you can figure out what worked last time and it will work again to put the IIH back into remission. I hope that you can. You may want to try keeping a daily journal of your symptoms and medications (there are samples on this site). Maybe that will help you figure out your triggers. In the meantime, we are here for you.

Thanks all for the comments,

I am seeing a Neurosurgeon in the am to schedule a VP shunt surgery. I saw the neuro-ophthalmologist yesterday and she definitely confirmed the diagnosis. I am allergic to diamox so I have no choice but to have the shunt surgery. i have been down this road before but am not looking forward to the trip. I am newly married and my husband is struggling with this nightmare. I will keep you all informed.

Tara

hi Tara;
I'm so sorry for this disappointment for you. I am wondering why they would put you through the shunt removal if there were no problems with it. as we say: "don't fix what's not broken". it's bizarre to me that they would just take it out and say you are cured. especially when I know the neurosurgeons know, if they don't tell you about it, that sleep apnea makes the ICP go up and that all patients with ICP have OSA; that's how they diagnose how bad it is to put in a shunt if they are not sure; they look at how high the pressure spikes when you are sleeping. and sleep apnea increases with age, so that by the time you are 70 you have about a 6% chance of not having it. so unless there is some clear definitive cure of the IIH, it seems likely that it will not go away and might only get worse with age. I am pretty sure I was getting papilledema but I started treating my OSA before I saw my opthalmologist. of course it took another year and a half to figure out I had IIH. without papilledema. and my symptoms always get better if I can treat the OSA; I don't do well with the meds either but I am hanging in with OSA treatment. I have bad days but I have good ones too and the headaches aren't too bad usually. Lasix helps, and prednisone.
good luck in the morning.
Deb

Hi Tara,

I had a very long period of 'remission.' In fact was told I was cured and it would never come back. I totally get how you are feeling. Its a lonely place. I have been with my Husband for 4 years and we have two beautiful children and its so challenging for the whole family. I can honestly say I felt like my life was falling down around my ears. I too am allergic to Diamox so it seems we have lots in common. Its so lovely to have this forum and to have people with similar stories. Ever time I see someone has something similar it gives me fresh hope that we are not alone in all this.
Glad you found us. The very best of luck with the shunt and the forthcoming treatment. I hope it goes well and hopefully remission will be forthcoming.

Zoe

I wanted to give on update from my visit with the Neurosurgeon today. On Tuesday they are doing a diagnostic surgery similar to a shunt placement called a Ventriculostomy. It measures the ICP and that will give the surgeon the correct parameters to set the shunt. Then the shunt will be placed on Friday. Not looking forward to several days in ICU with a tube sticking out of my head but if in the end I get relief then it will be worth it.

Again thanks for all the support.

Tara

I'm impressed by how quickly they're moving..it must be completely unnerving! I'm glad they're taking it seriously & checking things out before they proceed. I know you've been through it all, but do look at the guides & printouts to make sure you're covering all the bases. I'll keep my fingers crossed..good luck!!!

Hi Tara,


I'm sorry your pain is back....it is horrible!


All I can offer you are my prayers and

I am glad they are getting you taken care of so quickly. I hope the tests are all positive and that if a shunt is the way to go, that it is successful and as painfree as possible.

good luck with the ventriculostomy. as far as I know, they will be looking for spikes in your ICP while you are sleeping. you have to ask them, if this happens, does it mean you have sleep apnea? because in my mind, that's all it could mean. and so the obvious question is, if you treat the sleep apnea, will that eradicate the spikes? could that lower your ICP?
I hope it all goes well for you!
Deb

Hi Tara! Sorry I'm a bit late with my welcome ... and so sorry to hear you're having to deal with all this IIH stuff again after such a long period of remission. *hugs* It sounds like you are in a good place though, and they are moving along well with your treatment. Keep us posted on how things go with your surgery.