I really hope someone here can help me.

I was diagnosed with IIH about 3 weeks ago after suffering for months with a severe headache and a "wooshing" noise whenever I lay down. After a week in hospital, with a hundred Doctors all scratching their heads, a brave pioneer decided to do a LP and lo and behold I had an opening pressure of 30. :shock: I had 12mls of CSF drained off, was told to take 250mg of Diamox (bleurgh) twice a day and was thrown out of my bed and sent packing.
I haven't received a follow on appointment from the Neurologist, like they promised, I don't even know who to contact if my symptoms reappear!
I wasn't told ANYTHING about my condition, and now we actually get to the reason for my post.....................*takes a deep breath.
For the past few days I have felt as if my eyes are literally popping out of my head, like someone is pushing them out from behind, and my eyes actually hurt if I look left/right/up/down. My neck feels really stiff and I'm starting to get a headache and not just when I'm lying down, although I'm not sure if this is just stress.
I have a 20 month old son, my partner works full time and we don't have any family within a 50 mile radius........probably enough to cause a stress headache!

Can somebody please tell me if this eye "thing" is a possible sign that the IIH is rearing it's UGLY head again, or is it nothing?
I really don't want to go to hospital if I don't have to. I don't want to be re-admitted just to be told it's nothing, it's a logistical nightmare to get someone to look after my beautiful little boy when I'm in THERE.
Can my own GP tell if the pressure has gone back up or is it only a LP that can give you a definitive answer?
Sorry for all the questions but I'm a IIH virgin :oops:

Thank you sooooo much for reading all of this, I hope you don't have eye ache now!

Hi, welcome to the group. I know what you mean by the term your eyes feel like there pooping out of your head!!. I too get this when my pressure is up with this condition. Did they mention anything about going for an eye test to test for paplidimia? Its when the nerves are swollen at the back of the eyes. Its one of the symptoms with IIh and the high pressure of fluid can cause this. I know you had an LP 3 weeks ago did they say what your closing pressure was? They might not of taken enough fluid off. Everybody's experience with this condition is different.

This forum is great for any questions you have. There will always be someone that will be able to help you answer them

Thanks so much for replying to my post.
They didn't mention anything about seeing an opthamologist again, although I did see one on diagnosis who mentioned I had the papillodema, only that they would send me an appointment for a follow up with a neurorologist and something called an MRV scan. Neither of which they have done. To be honest they've been a bit p*&@ poor about the whole thing. Everything that I've learnt about the condition has come from Google or here. THANK GOD for this site!
They told me after the LP that they had drained my CSF down from 30 to 15, which I'm assuming is round near normal?
It just worries me that if my pressure is creeping up again then it's only taken a few weeks and I'm on 250mg of Diamox twice a day.
I'll contact my GP tomorrow, see if they can check my eyes for me.
It's taken me ages to type this, i can't seem to spell or put a sentence together at the mo :oops:

ye this site is brilliant its really helped me. The docs don't give you any info I found everything myself. This website is also on facebook.

They put your pressure down to normal. I would try contact the neuro docs ask when your follow up is. They may need to up your dose of diamox. When I was first diagnosed I had to go back after a month cause I didn't feel any better they done another LP and they upped my tablets. Could be your case too.

Have you had the side effects of the diamox yet, tingling in the hands and feet are normal they go after awhile once your body gets used to the medication. Also the metalic taste so fizzy drinks taste awful!!
Try not panic about everything that is going on its all new to you. Your brain can feel confused (brain fog I call it :)ha )

hi Mcleod;
yes, please call and make sure you get into the ophthalmologist right away. Diamox doesn't always work and your vision is at risk so you need to be followed for the papilledema. I do get that pressure feeling in my eyes and eye pain also when my ICP goes up. if you think about it, besides the hole your spinal cord comes out of, the holes in your skull where your eyes go are the biggest spots for pressure to be discharged out of the skull when it increases in the brain. so I think that's why we feel it there first.

interestingly, 10 yrs ago I was diagnosed with Graves ophthalmopathy; I had Graves thyroid disease and then I developed proptosis (eyes bugging out) which they see in that condition. but I remember having the whooshing sound in my ears then and now I have to wonder if it was all from the ICP that my eyes popped out. I always got better on prednisone, which is the only thing that helps my ICP now! can you see any changes in how your eyes look or is it just the pressure feeling?

Deb

Hello McLeod and

It sounds like your docs are trying to get onto the right track, it just hasn't gotten there yet.

Unfortunately an lp is often just for short term relief. The body replaces that lost spinal fluid right away and can cause the symptoms to come back right away. The Diamox helps to slow down that rebuilding process. Sometime increasing the dose of meds will help, but you need a doc to take charge and be available to you to make these kinds of adjustments. 500 mg of Diamox is not a lot, so there is plenty of room for change. And if the Diamox doesn't work there are other Diuretics that can be tried. Keep a medication and a symptom log (samples are available on this site) which will help your docs.

Definitely..it sounds like your pressure is just high again. If you have a good relationship w/ your GP, would they advocate on your behalf? I'd try them or the ophthamologist..either should be able to make referral to neurologist. If hosp was making the referral, then I'd follow up w/ them first. I don't know a lot about your system, but I know UK has PALS and each hosp in the states has a risk management dept that fields complaints..you may want to follow up w/ them and see if they can help expedite things. I'm sure if nothing else you've found that your symptoms are typical for high pressure..just may take some time to find the right treatment. Hang in there!


Julie

A HUGE MASSIVE to everyone who took the time to offer their advice and reply to my post.
I'm going to give NHS Direct a call as I can't get in to see my GP until monday and I've been feeling pretty crap today. I feel soooo sick, the "whoosing" noise is back with avengance and the pressure behind my eyes is getting pretty unbearable.
What would I do to have my "normal" life back? My fiance said he's going to take me to the knackers yard! :lol1:

Hi and a warm welcome , I apologise for the late reply, I myself have had one of those off weeks. I agree with all the other ladies, it does indeed sound like your pressure it up and an LP may be necessary. When you do get to see someone, I would ask them about your treatment plan such as whether or not your vision and peripheral fields are going to be monitored regularly with the Ophthalmologist.

Unfortunately it's trial and error at the start of the medication, and when you are first prescribed Diamox it can take your body awhile to get used to it. Sometimes more than one LP is needed at the beginning. If you don't get anywhere with NHS Direct, give PALS a call at the Hospital that treats you, and they can help you to get an appointment with your Neurologist.

It wont always be like this, once your body adjusts to the medication, and you vision monitored, you will find that you can function a bit better than you are now. You'll have to change the way you do things to accommadate the illness, but it can be done, just not all at once. Don't give up hope, and we are all here for you.

Heidi:D