Hi everyone,

I'm Harriet, 26, and I was diagnosed yesterday. It was a relief at first as it was thought I had had a stroke or had a brain tumour but I am in so much pain from my head that I am struggling to cope :-( I had a lumbar puncture yesterday and have been put on Topiramate. I have lost vision in my left eye, can not hear properly and am just very scared. I had a ct scan and was discharged today with medication to receive an appointment for an MRI scan, appointment with the neurologist and more tests with the eye specialists.

My head feels like it is going to explode, will this continue for much longer at this severity or will it ease? The only relief I have is from lying down but even then its still unbearable. Sorry for sounding so clueless, I had no idea this condition existed until 24 hours ago!

Thanks xx

Hello Harriet, and

Having such a recent diagnosis, I am sure you are feeling overwhelmed. We understand that part, completely. Have a good look around the site, there is lots of good information available here.

I am surprised that you were not given Diamox to help control your pressure. That is often the first med tried. Topamax can be effective, it can also help with weight loss, which may (or may not) be a contributing factor in IIH.

Do keep a close watch on your eyesight. Often symptoms can be reversed once the pressures are brought down and under control. I hope that will be the case for you.

Hope you get to feeling better real soon.

hi Harriet;
hopefully your head is feeling better by now. what you described above sounded like post tap headaches, not IIH headaches. good luck with everything. I hope they give you something for the pain. I am not sure why docs are so stingy with us with the pain meds, why they think we have to just suck it up. it's like they don't think we are really in pain.
Deb

Hi Harriet, and welcome to the group! Diagnosis and treatment can definitely be overwhelming, so I'm glad you found us.

It does sound like you may have had low pressure headaches as a result of your spinal tap..you're fine laying down put get smacked w/ a huge spasm of pain as soon as you sit up? If you're still having issues I would contact the doctor..you may need a blood patch to stop spinal fluid from leaking. Otherwise, try to lay flat as much as possible and drink a lot of fluids.. especially caffeinated beverages. Hopefully you'll be feeling better soon!!!

If your pain has gotten worse and it's not leaking fluid, you might also talk to doctor about a different med..headaches are a side effect of topiramate and I got them instantly. There is a section on IIH and Medications, so give it a look and let us know if you have any questions.

Take care,

Julie

Hi Harriet! Welcome to the group, and I hope that you are feeling better by now following your LP. You'll find lots of great resources here on the site for understanding your diagnosis and working towards managing your IIH. I remember so well how overwhelming and scary it is at first! *hugs* Let us know if you have questions we can help with!