For years, I have been treated for migraines.  Nothing seemed to work to get rid of them, and I would always have problems with my eyes when I did have them.  The family practitioner I was seeing for my migraines, was just telling me to lay off my depression medicine when I told him I was having vision problems.  Finally I ended up in the ER because of vision problems.  I was there for about 8 hours with no answers.  I finally got an appointment with a neurologist.  He examined me, but could not tell me anything that day.  My frustration was at its peak at this point.  The neurologist ordered a mri, and eeg.  Even more frustration since neither showed anything wrong.  Finally I had to get a spinal tap.  Talk about anxiety!! My pressure wasn't high enough to definitely say anything that day.  The doctor couldn't see me until the next month which was extremely frustrating because nothing was being done.  Finally we got in to see a nurse practitioner at the same neurology clinic.  They put me acetazolamide because of my pressure.  The nurse said the pressure was boarder line on whether or not they needed to give me medicine.  So they decided to give me the medicine.  I was on that medicine from December till June.  Then I was doing so well, that they took me off the medicine.  I was so excited!  This was not to last.  I started teaching when August came around again (my second year of teaching).  Then my symptoms came back with a vengence!  I was put on Lasix to help my eyes and the migraines that had come back.  My eyes eventually gotten so bad that I was advised to go to the ER.  I went and the resident neurologist said I would need another spinal tap.  The neurologist took 5 tries with the tap before giving up and saying I would need to have an optic nerve fenestration.  We asked to see another doctor at the ER and the ER doctor came to give the spinal tap a try.  He got it on the first try and I was admitted to the hospital for the day.  They told me I would have to go back on acetazolamide before discharging me.  I missed 3 days of work because of spinal headache.  Needless to say this has been a whirlwind few months for my 24 year old self.

Hello Desi and  

I am glad that you found someone to listen to you, but it sounds like you still need to find a doc who has a better understanding of IIH.  That seems to be a common problem.  You were doing so well while on Diamox because it was doing it's job!  They should have just left it alone.  IIH cannot be cured, but it can be put into remission, which can last for many, many years, so don't give up hope.  Hopefully know that you are back on Diamox you will find the same level of relief that you had earlier. 
I highly recommend that you see an Ophthalmologist and have your eyes checked for optic nerve disc swelling (papilloedema).  Especially with your vision issues, that may be a problem and IIH and notorious for causing vision problems.  
Do not let the opening pressure of your lp's be the determining factor.  MY op's were always between 22 and 25 which is considered "borderline."  Now that I have a lp shunt, my most recent op was 12.5 and that seems to be what my brain likes.  So my "borderline" readings were actually HIGH!

Have a good look around the website.  There is lots of great info available here. Lots of great people to talk to also!

I actually forgot to put that in my story! :oops: I have been to see the opthalmologist.  My swelling was really bad.  But the worst part was the passing back and forth between them and my neuro.  My neuro said it was an eye problem and the eye dr said it was a neuro problem.  Finally my dad had to tell them to talk to each other because this was getting ridiculous.  They still do this from time to time, especially the neuro.

On finding a neuro that specializes in IIH, there aren't many neuros to choose from on my insurance plan.  I'm trying to find someone, but it is extremely difficult going.

I have found this website to be a wealth of information and I am so thankful that I happened upon it the other day!

Hi Desi, welcome to the group! I'm glad you found us because it sounds like you've had a typical experience with diagnosis and treatment. You definitely have to become you're own advocate and make sure everyone is communicating. I hope the meds will get you back on track soon! There are a few different ones to try and they also can work in combination, so you still have options.

Unfortunately, everyone is different, so the "normal" varies. I was diagnosed with IIH when my opening pressure was only 20 because my symptoms completely went away once fluid drained. Now, 13yrs later, my shunt is set at 20 and anything lower gives me low pressure symptoms..2o has become my new "normal". I would recommend keeping a symptom log, so you can track any changes. There are examples in the Useful Guides and Print Outs section.

Check out the site and let us know if you have any questions. We'll do our best to help you through this!

Take care,
Julie

Thank you guys so much! I'm just happy to find people to talk to about all of this without going batty!

Hi Desi and welcome to our community.  You'll find many people on here with a variety of different experiences.  Keep posting and letting us know what's going on.

Just letting you guys know that I finally found a Neuro-Opthamologist who is in my network!   So I'm hoping that he will be able to help instead of passing me around like my other doctors.  I've been put on 1000 mg of Diamox since being in the ER and have noticed some things.  Has anyone noticed your hair thinning or falling out while on Diamox?  I have really thick hair, but now it feels a lot thinner and I was wondering if this was a common problem.

Desi..here's info re: Diamox from WebMD. I would suggest that you contact your physician about your symptoms because it could be related to thyroid or something else.

"Dizziness, lightheadedness, and an increased amount of urine may occur, especially during the first few days as your body adjusts to the medication. Blurred vision, dry mouth, drowsiness, loss of appetite, stomach upset, headache and tiredness may also occur. If any of these symptoms persist or worsen, notify your doctor or pharmacist.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
Tell your doctor immediately if any of these very unlikely but serious side effects occur: increased body hair, hearing loss, ringing in the ears, unusual tiredness, persistent nausea/vomiting, severe stomach/abdominal pain.
Seek immediate medical attention if any of these unlikely but very serious side effects occur: easy bleeding/bruising, fast/irregular heartbeat, signs of infection (e.g., fever, persistent sore throat), mental/mood changes (e.g., confusion, difficulty concentrating), severe muscle cramps/pain, tingling of the hands/feet, blood in the urine, dark urine, painful urination, yellowing of the eyes/skin.
A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: blisters/sores in the mouth, rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.
This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist."

So I went to the Opthomologist and was told that I now have unilateral papilledema.  She is recommending to my neurologist to get further blood work and more tests done.  Has this happened to anyone?  The unilateral papilledema?

It just means that optic nerve is only swollen in one eye instead of both. Sometimes the cause is physiological or related to pressure. There are other disorders related to unilateral papilledema, but there are many other members, including myself, that have experienced it w/ IIH. It's good they're looking into it, but I wouldn't think it's anything to worry about..hang in there!!!

So far so good since my neurologist visit.  I am on 20 mg of Lasix and am doing much better. My parents have also noticed.  I've gotten my appetite back and am feeling better.  My eye has gotten better vision wise, but now we are getting some cold weather and it has been hurting since it has started.  Just wanted to let you guys know that I'm doing better!

Thank you for the update.  I hope things continue to improve.  
And do try to stay warm!

So glad to hear it..hope you find continued relief!