Hi everyone! My name is Amanda. I was officially diagnosed with IIH in April of this year. It was first suspected during a regular eye exam where the optometrist found pappilidema. So the journey began: optometrist sent me to the opthamologist, opthamologist sent me to the neurologist, and the most recent the neurologist sent me to the neurosurgeon (who I will see this week). I have been having issues with my eyesight, swooshing in the ears and severe headaches for awhile, but my primary care doctor dismissed the different symptoms as allergies and migraines. I am happy to finally know what is going on and why I feel so awful all of the time. My first neurologist tried me on Diomax, but I had a severe allergic reaction to it. I have a sulfa allergy, and I had told my first neurologist of this allergy, but he ignored this and prescribed the Diomax (which is a sulfa medication, I was unaware and should have checked it out before taking it). I switched to a different Neurologist in July and have recieved lumbar punctures every 2 weeks to try and keep my pressures down. I am now a candidate for a VP shunt and though I am ready for it because I am ready to feel better, I am starting to become terrified as my appointment with the neurosurgeon gets closer.

Hi Amanda, welcome to the group!!! I can't believe they've been doing spinal taps every couple of weeks..talk about torture you poor thing! I know you have limited options w/ sulfa allergy, but did they try any of the other meds before deciding to poke at you?! lol.. I guess I'm lucky because my neuro-ophthamologist and surgeon think LP's are barbaric..definitely a last resort. As long as you've found a benefit, I guess it's worth it. I'm glad they're looking at other options for long term interventions though.

You'll find information about VP shunts throughout the site, but probably the most will be in the IIH Surgery section. Post any questions or concerns and I'm sure there will be members willing to share their experiences. You can also PM any of the Moderators or Admin Team w/ any questions, concerns, or additional support. We'll do our best to help.


Julie

Hello Amanda and

I too am allergic to sulfa but have been able to take the Diamox. I am lucky on that one, anyway. And there are lots of people who can take the Diamox because it is slightly different than standard sulfa. Often the docs do prescribe it for that very reason, so don't be too hard one yourself over that one.
If you are not taking any other diuretics, than yes, the lp's would only offer very short term relief. It does not take long for the pressure to build back up. There are many possible problems with getting lp's, which is why using that as a solution for IIH just isn't practlcal or advisory. Besides the possibility of getting an infection, you can also develop a leak, which certainly is not fun. Do see about trying a different medication or getting that shunt put in soon.

Hope you get to feeling better

Hi Amanda and a very warm welcome to the group. What a shame that you had an allergy to the sulpha in the medication, you aren't alone with that problem. I can understand you being very anxious about your appointment with the Neurosurgeon, I felt exactly the same my first time too. There are many of us here who have shunts and are very willing to answer all your questions, so please don't hesistate to ask them, however many they are.
Lumbar Punctures aren't supposed to be done on a regular basis longterm, which is why they now want to discuss a shunt with you. We do have a booklet with questions that you can ask the Neurosurgeon which I think you will find helpful. Talking To Your Neurosurgeon
Our team are here to help so don't be afraid to reach out to them. Our members are all very helpful and supportive and know what you're going through. You're not alone and we're always here for you.
Heidi

Hi Amanda! Welcome to the group! I'm glad you found us and I hope you'll find this site to be a good source of information and support. I don't have a shunt myself, but there's lots of folks here who do, so feel free to ask any questions you may have. I know you'll get a lot of a great input. *hugs* Looking forward to getting to know you better here.

Hi everyone! Thank you for the warm welcome! My appointment with my neurosurgeon went great yesterday! He immediately put me at ease! They've decided to do the surgery on Sept 27th! Wow, 2 weeks from now! I am most definetly going to check out the surgery portion of this group! As confident as I think I am about having the surgery and feeling better, by realized by the end of my appointment yesterday I was shaking!

Forgot to address the meds....I have a very severe sulfa allergy (so severe they can't even use the sulfa based burn cream on me, even though little to no sulfa enters the blood stream). I can't tolerate topomax because I have abnormal kidneys, so as much as I wanted that to be an option (it has a side effect of helping you lose weight, what women wouldn't want that!) it just wasn't. I am super glad the lumbar punctures are over (they are only for emergencies now)!

Amanda, I'm so glad you had a good experience! They're really moving you along quickly, so I think you have every reason to be nervous. Check out the IIH Surgery section and let us know if you have any questions or concerns.