hello
I was diagnosed at the start of october, had vision probs coupled with headaches, it was my optician that sent me to the hospital as an emergency. I had an lp but couldn;t measure how high as the csf overflowed the measure which ended at 40.

Since then I have seen a neuro but was not impressed by them, and currently waiting to be transferred to another. I am waiting for an mri scan and opthalmic appt, which should have been urgently requested but have fouind out yesterday that no request had been sent, another reason for changing my neuro. I still have vision probs and occasional headaches, and the sound in my ears. I am on diamox which was a pain in the bum trying to get my gp to do a repeat prescription for (took 2 weeks).

Am I feeling like this still because the pressure is up, the neuro didn't tell me any thing i needed to know and couldn't answer my questions properly. What are you suppossed to do when you feel like this, contact the neuro or see gp or go to a+e, is it another lp that I need I'm wondering, or is this the norm.

I am worried about everything at the moment, I'm currently on maternity ( 6 1/2 month old girl) my husband works long stretches of nights so am on my own nearly 24/7 and so so tired. My mum and dad help out when they can. The thing being I am due back at work in january and can't see me managing to do that when I feel like this. Has anyone managed to hold down a career while having iih, as I have a new house on reserve and don't want to commit myself if a few years down the line I wont be able to pay the mortgage.

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Welcome to the group! I'm sorry to hear you're still struggling. If you're having symptoms, I would say your pressure is up. It honestly doesn't take long to build back up after an LP. You may just need to increase the Diamox, but I'm not sure your GP would be willing. If you don't have a neurologist and GP isn't willing, then I would go to A&E..especially if your vision is affected or you're unable to function. If you continue to have issues w/ service, then you may want to contact PALS..they should be able to advocate for you and make sure you're receiving the treatment you need in a timely manner.

IIH can be a difficult disease to diagnose and treat. It also seems to ebb and flow, so could be something you always have to consider. Some people are able to manage a career, but it really depends on how severe your symptoms and response to treatment. Sorry I can't be more concrete. I personally have had periods that I've been unable to work, but have maintained full time employment since 2005.

Keep us posted!
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Julie

Hi Jo, and welcome to the forums.
I do hope you are able to switch docs and soon. I am in the States, so I have not experienced your health system, but Heidi has. She and Nikki will be able to give you specifics, but, as Julie said, PALS can help you.
Of hope you are able to get relief soon. Hang in there. It will get better.

thanks for that, its encouraging to know that you can still manage to work, its just a whole scary prospect. I have found I have been referred to another neuro just waiting for an appointment now.

It's definitely scary, but will hopefully become more managable with treatment. You will also learn triggers and limitations, which should also help you adapt. It's not perfect or always easy, but it can be managable! Let us know how things go with your new neurologist.

Hi Jo. Welcome! I personally have had issues with the neurologist (still have issues....), and getting the doctors to really understand how much of a burden this disease is. I usually end up crying. lol

I can tell you now that every person with IIH is completely different. We all have triggers, but we never follow the same pattern as one another. I guess we are a bunch of proverbial snowflakes. Sometimes yes, we seem to melt, but we come back We all come from different walks of the earth, so there is always someone to relate, and talk to.

Personally, the ride for me so far (I was diagnosed in April) has been one of the craziest things I have gone through. I have cried, I have laughed. I have done stupid things. But I have met a great group of people on here.

So chances are your pressure is still up, which sucks. You may be able to go back to work, but right now you will need family I imagine. There are some great pamphlet thingers on here to explain the disease to your family so they understand a little better ( my family thought i made the disease up...lol)

I understand the work part. Right now Im not able to work. Goodness, right now Im not even able to go outside without the sun triggering a headache lol.

BUT...let me tell ya one thing, it gets better. And life goes on. We just have to keep moving forward.

Thats what I keep telling myself, its happened so got to keep going can't sit dwelling on it, its not going to change the outcome.

Thanks its good to know others out there who know exactly what you feel like.
Just wait n see what the new neuro has to say [You must be registered and logged in to see this image.]