Hello everyone,

I'm Charlie.

I've been recently diagnosed with IIH, and have had quite a strange and hectic month! I saw this website and thought it would be nice to chat to others who have had the same experience as me and maybe pick up a few tips on how to cope with this condition!

I had been having headaches for a few weeks, the GP initially thought it was a virus, then I had this dreadful double vision alongside the headaches and decided to pop to my Optician who said I had papilledema and sent me straight back to my GP with a letter saying that I needed to be seen urgently. Luckily, I was squeezed in with a doctor who admitted me straight to hospital.
After three long days in the hospital, a couple of worrying nights stay, a CT scan and eventually the nasty Lumbar Puncture. They said my CSF pressure reading was 40+ and they drained quite a lot of the fluid. I was put on 250mg of acetazolamide, one a day, to take in the morning and was eventually sent home with a diagnosis of IIH.
The doctors in the hospital said I would be put on the list for the neurologist and an appointment would be sent out to me as soon as possible.

Unfortunately, things didn't get much better when I arrived home! I suffered terribly with the side effects from the LP and had to lie down flat for about 10 days as whenever I tried to sit up I thought my head was going to explode and I felt so nauseous.
Luckily, I have recovered from those nasty side effects but I am now left with a constant headache (often quite bearable, sometimes almost unbearable), when I go outside in bright light, I lose my balance and my vision is very strange as though I can't focus properly and to top it off I am absolutely exhausted and feel so weak. I hope this sounds quite normal for somebody with IIH?

I've had my neurology appointment through, which is in just over a week and I went to see the Doctor, who signed me off work until the day after the appointment.
Up until all of this, I've had the next few years of my life planned out and am supposed to be going to University in September. Everything is up in the air and it's all really hard.

Sorry to go on, it's just quite a relief to reflect on the last month and get it off my chest!
I was just wondering, from everyone's past experiences, what I should expect from the neurologist and is there anything I should be asking them or checking with them?
And also, do you think it's likely that I will be sent for another LP, and how often am I likely to have them?

I'm sorry to ramble on and would be very grateful to hear any views or receive any advice from anybody.

Thanks xx

Hi charlie and a warm to the group. I'm so sorry you are having a terrible time, and that you had a low pressure headache after your LP, they are always worse than the high pressure ones. Usually the low pressure headache settles after a few days of bedrest, and the fact that things aren't any better could mean your pressure has gone up again. This could explain why you feel exhausted, because chronic pain does that, and why you have photophobia and feel so ill.

I would go back to your GP and tell him that you are still having all these problems and that you are beginning to feel worse again after the LP. Hopefully he will be able to get you seen and assessed with a Neurologist earlier.

Has your GP prescribed you any pain medication for the headaches? If not get him to prescribe you some. If you haven't got any Try using the 4Head stick or strips to help with the pain. If you are on pain medication they will add to the pain relief.

It could be likely that the Neurologist will want to do another LP, he may even decide to increase the dose of your Diamox. The Lp's are usually done to relieve the pressure if it increases, so it all depends on how your body responds to the Diamox.

Once your pressure is sorted and your are responding to the Diamox, things should then start to settle down. and you will be then monitored every 3 months or so with the Neurologist, and you will also be monitored by the Ophthalmologist, who will do
regualr Field Visual tests to check your vision.

Please don't give up on the idea of going to University, and we do have some Guides and coping methods that can help you with IIH in our Recommendations for you section. Here they are; Helpful Coping Methods Useful Guides and Printouts

We are here to help and support you anyway we can, and feel free to rant anytime, that's why we're here. Importantly remember, you are not alone!