I'm only 28 and diagnosed with IH. I have a slew of medical issues and I can't handle it all sometimes.
I had a spinal tap on Jan 2nd and my opening pressure was 25 - closing pressure 14. I'm currently on Diamox (day 3) and I have a loud ringing in my head, my fingers and toes tingle - and my fingers turn bluish sometimes, and I have the worst headache of my life. I just wish it would go away. I wanted to write more but I physically can't right now...

Welcome to the group. You seem to be experiencing the common sideffects of the Diamox, which with some people settle down overtime, however, there are many who find the side effects hard to tolerate. If you are finding the sideffects unbearable to live with, have a talk to your Neurologist about it who may be able to help or prescribe an alternative. Unfortunately most of th medications used to treat IIH have sideffects.

I encourage you to keep a symptom log and a medication log, which will help you to give a full and accurate account to your doctor of your progress. We also have lots of helpful booklets which you may like to look at. As you will see from other members posts, many also have other medical conditions, and you aren't alone with having to cope with more than one health issue, so members will relate to you and understand how you feel.

It is difficult to cope when there is a lot going on and it can be overwhelming. We are here to support and help you, even when you need to have a rant. We will help you all we can.

Heidi

Thanks Heidi. I'm so glad I came across this site.
Will my hearing come back? Not that it's all gone but back to "normal"?
I also have Superior Canal Dehiscence Syndrome (and PCDS) so my hearing loss was already bad before this medication. It used to be that if I was eating something, I couldn't hear the tv over my chewing. Now that I've started this medicine, I can't hear it at all. :(

Hello issuebox and

I wonder if you might be dealing with low pressure now. Does your headache get better after laying flat? Does caffeine make it better? If it does, you may have developed a leak.

I also had hearing loss, mine due to the zoster virus. Having my ICP (IntraCranial Pressure) altered always changed my hearing levels. I would do as Heidi said. Keep a daily journal on your symptoms. Write down how you are feeling, what makes you feel better, what worse, what the weather is (often a trigger), what you have eaten, and thing different that you noticed. Perhaps a pattern will emerge.

I hope your hearing improves and your pain decreases.

my headaches are not positional. i don't know how to feel about that...
my neurologist thought i might have a leak and I went to the er a couple weeks ago. the anesthesiologist refused to do the blood patch because I was sitting up (attempting to go to the restroom to pee after 4 hours of waiting on him...) he said it would heal on it's own in 2 weeks anyway. let's see him live with this s...tuff for 2 weeks!

If the ha's aren't positional it may not be a leak, but many leakers need intervention.
Have the headaches become worse post tap? Might the intense pain be from more than one of your health issues?

i always had sinus headaches... which i was recently told were atypical migraines. well, after the tap, i had the typical migraines - just terrible PAIN!