I'm so sorry this is happening to her at her age. has she taken any medications or hormones? it sounds like a situation where she got triggered into this by something. Accutane? a tetracycline? birth control? I lost 40 lb after my last flare, and was still sick when very thin for me. there are others who have this when thin, although I think that very high pressure and the eye damage is not so common in thin people, but that is just my sense of it after being on these boards for a few years. my pressure was only 23. I went into remission after jaw surgery for my sleep apnea, which was also very mild.

So sorry your daughter (and you!!) are dealing with this.

I am very much like your daughter. I was in my 20s when I was diagnosed and didn't fit any of the "textbook" criteria most people do (I've never been obese, never taken hormones or high doses of birth control, etc etc etc)

Does your daughter drink a lot of diet soda (or pop? I'm a New Yorker! Can't get used to calling it pop). There has been some evidence that the aspartame (the sweetener) in diet sodas can lead to increased intracranial pressure. Does she suffer from sleep apnea that you're aware of? That can also lead to high ICP. Along with many medications (some acne meds, high doses of birth control, amongst others)

My increased pressures were unfortunately unable to be controlled by Diamox, so I eventually had to get a shunt. If you have questions about anything, please don't hesitate to reach out - my email is erin.otto86@gmail.com

Stay strong, Dad!

So sorry for what your daughter (and you) are going through as other have mentioned she found gave secondary ptc not idiopathic, meaning it was triggered by something and is not of unknown cause. My first occurrence was thought to be caused by birth control pills (actually stopping them), my second flare up was caused by my lupus becoming unstable. Now my ptc is officially considered immune modulated not idiopathic. Others have listed some common triggers of PTC high levels of vitamin A are also known to trigger elevated ICP, some of us have found when we eat foods with msg it will cause are symptoms to flare up. Does she have any other symptoms or health issues? Good luck!

Thank you for the replies. I have been doing tons of research and trying to inform myself on this PTC/IIH. As for any causes I am absolutely clueless. She just finished up basketball season. This is division 2 womens basketball so it was pretty strenuous. She has been very very active with sports her whole life. The only thing I can think of is she was under a lot of stress her freshman year with basketball and school in general. She was drinking a lot of starbucks(high caffeine). Maybe the mix of high stress and caffeine? She doesn't smoke, drink, take any pills, no acne medicine, no birth control pills. This diamox that she is on now is taking a toll on her in my opinion. She is extremely tired all of the time. I mean exhausted tired. She has gotten very weak. We went out to shoot basketball for the first time in over a month and she had troubles even shooting for 5 minutes/ This is from a girl who could play basketball for hours and hours a day. After about 3 weeks she doesn't see any improvement in her eyesight. She has an appt with Neuro in a couple of weeks. Without having headaches or other symptoms the only way they could see if the diamox is working would be to do another Lumbar Puncture. I guess the Neuro Optho could check to see if the swelling is down? I honestly feel like they are treating her like an outlyer. I have heard we don't usually see this in a girl in your great health condition and with your weight. I feel as if the doctors are king of loss and just guessing at this point. From all of the things I have read this sounds like a lot people are kind of in the same position. Not a lot of time given to this problem? I have a question for those that have taken diamox. When/if you quit taking the drug do you improve back to your original self? She desperately wants to play basketball again and is very nervous about her physical condition with practice starting up in a few months.
Thank you for any comments.

I am 25 and pregnant with baby number 2. I know of one other person besides myself who has had this. While you're daughter does not fit the description a neuro optho would be able to test her field of vision and order a Mri/mrv to see if the optic nerve is swollen or not. Mine was pretty bad but I've been taking acetazolamide for about 6 wks and it's helped I've had a lot of worry because I'm pregnant but so far I've seen a lot of improvement and my baby is healthy. I don't know if any of this helps but the best thing to do is just keep on the doctors until they listen. Even if they don't like it.

Caffeine does increase intracranial pressure which why it is good after lumbar punctures to prevent low pressure headaches but I doubt that would be the cause of her condition. Has she had a head/brain/neck MRI/mrv to check for physiological abnormalities that might be causing the disease? The doctors don't like doing lumbar punctures they usually , in my experience at leapt, base your progress on symptom relief and eye exams including visual fields, I wasn't able to tolerate diamox but I do well with topomax.

Yes she had a MRI and MRV with and without contrast and everything was perfect. She has had multiple field visual tests. Her right eye is very bad where she has a blind spot, very poor peripheral vision, and everything appears very dim or dull. The Optho Neuro says there is damage to the optic nerve in that eye which is the right eye. The other eye (left eye) is also very swollen. No damage yet but very swollen. She doesn't have headaches, doesn't feel pressure behind the eye or any other symptoms besides the vision loss. So when they did the lumbar puncture the opening pressure was 51. Very high. They ran blood tests and test on the spinal fluid and all tests came back perfect. The Neurologist put her on Diamox that day 1500mg a day. We go back to see the Neurologist on June 15th. It is just frustrating that both the Neurologist and the Optho Neurologist have know idea what caused this as she doesn't have any other symptoms besides the vision loss. Which is scary as hell by itself. So their fix was to try her on this Diamox for a month and lets see how it does? We have no idea how it is doing after 2 weeks. Her eyesight isn't any better. No idea about the pressure because it wasn't causing her headaches. The side effects of the Diamox are terrible. I am hoping that when she goes back if the pressure is down and the optic nerev swelling is down the can reduce or take her off the Diamox. I read lots of people stay on the Diamox to help lose weight she can't afford any weight loss at 5"10 and 125 pounds.

Linzdad,
I'm sorry to hear about your daughter:(
I am 22 and I was diagnosed on January 25th,2017 this year. My perfect 20/20 vision went from perfect to double vision in a matter of days which sent me straight to the eye doctor.... in return to the ER Overnight. I had my MRI then no tumors. Mrv. A-ok . Lumbar puncture opening at 44 . In which they started me on diamox 500mg 3 times daily . Plus. Topiramate 25 mg 2 twice daily (.weight loss) . Topiramate is the drug you should worry about weight loss with or any similar drugs . The diamox not so much. Since i had another lumbar puncture . Opening went down to 33. I've lost 53 lbs. I've have had over 20 visual field tests/optic nerve images. Met with neuro surgerons . Had a venogram of my head . Had an angiogram performed to see if I was able to have a stent inserted in my transverse sinuses (they are narrow). & luckily I didn't because now nearly 5 months later I'm reduced down to 2000mg of diamox a day . & my eyes are returning back to normal. I am going to have possible permenant perifrial vision loss my opthamothigist said. But let's pray we continue to heal! & i have the option to continue on my own with medical intervention . With your daughter . I know it's scary , it's a lot to take in , it's a lot of stressful nights , & for her , it's a lot of moments where she doesn't want to be alone (mostly because of the medicine & mostly because of the scariness of what's happening to her) the doctors if they are right will do what's right. Don't let them rush her into surgery. Let the diamox take its course. & she doesn't need to loose weight. Cut the caffine completely . Cut the stress off completely. Is she a pop drinker? Or sodium lover? Vitamin supplements? Hope this can help

Thanks so much Beckerzz. She did drink a lot of soda and a lot of starbucks at the same time she was under a lot of stress. She has cut the caffeine out the last few weeks she has been on Diamox. The soda was a given. She said it tasted terrible. You are absolutely right she is really scared and nervous about what is going to happen to her eyesight. Did they figure out what caused yours to happen in the first place? Did you have headaches with your high opening pressure? Were you really tired/completely fatigued a lot on the Diamox? I am very happy to hear some great news that your eyesight is coming back and you are on the road to recovery. It is refreshing to hear some positive stories.

They don't know , & truely won't know. After going Thru all of the scans , even having the angiogram to see if my transverse sinuses were the cause because they are severely narrow, the surgeons & doctors to this day say my brain & body is completely healthy , & my brain is flowing beautifully. If anything I'm teaching these doctors at the hospital about the disease itself . Each one of us are different & my neuro othomo told me the other day when I seen him that my case alone isn't like most , some aren't loosing weight, some aren't improving , some have severe headaches & different symptoms I've never experienced. Some have had surgery as an only option & have dealt with this for years. That being said. It's something that potentionally can affect her forever . I was a full time soda drinker, Dunkin' Donuts coffee every morning, & full time worker & lived on my own. That alone I think created its own type of stress. I've since cut pop out completely, cut caffine out , moved home with my pops, & still work full time, just switched career paths. I think that alone has helped . It's not something I want to do forever but during this critical time, I feel it's necessary. I did feel great fatigue at first , sometimes still do. I think it's a small mixture of cutting out the caffine , & the diamox. Get lots of rest & push thru it. I found having alittle bit of tea , green tea or iced tea , where it has alil caffine , but not crazy amounts helps alil bit. But don't mention the caffine . Maybe offer it as a normal drink? Don't rely it ya know? Just every so often. Then you'll get past it . Find a way to get both of your minds off of the disease , it can help you as well & help her & make her happier & feel better , she'll perk up without even noticing. & I didn't have headaches at all. I had acheyness behind my eyes ,that wouldn't go away & stiffness around the back of my head & neck. But never headaches like the ones some one the people describe. (Eyes coming back) It did with the three & now being on two grams like I said the perifrial is alil iffy some days but my neuro opth said to just give some more time to determine if it's permenant damage.

Not sure where your located but I am from the Chicago area, the doctors here at the major hospitals. When things first started all communicated with eachother. My neurologist , neuro-opthamologist I still see & neuro surgeon at my hospital got ahold of a nationally recognized neuro surgeon at northwestern & he performed the angiogram. I could always give you reference to them if you were close .

hi Linzdad;
it is really amazing to me that at an ICP of 51 she has no headaches. you have to wonder if an ONSF surgery might be the best thing for her. that would hopefully spare her optic nerves to save her vision, and maybe she could come off the Diamox. have you discussed that procedure with the neuro-ophth?

I'm really sorry to hear about your daughter. I visited an opthamologist who told me that my optic nerves are severely swollen in both eyes and diagnose me with bilateral optic disc edema. I was advised to get a spinal tap lumbar puncture and to see a neurologist. I went to the ER and was admitted for four days I just was discharged from the hospital yesterday and I have been put on 250 mg twice a day of acetazolamide. I am a 31 year old female 286 lb and I have taken birth control since the age of 20. I have not been overweight my entire life this is been over the last six years I have been extremely overweight and it has been hard for me to lose any kind of weight because I have been on Propranolol for high blood pressure and birth control. This is day 2 of taking acetazolamide. I had the lumbar puncture done in the hospital and I also had a CT scan with contrast and an MRI with and without contrast. My spinal fluid came back okay and my MRI and CT scan returned and everything was OK as well. My blood pressure has also been controlled and not been high so I've recently stopped taking birth control and Propranolol and an attempt to lose weight. My vision loss is much like your daughter's where my peripheral vision is blurred and obstructed and since the spinal tap and taking the ace acetazolamide I have noticed a slight Improvement in my vision. I still have the ringing in my ear and sometimes I can still hear my heart pulsating in my other ear. I have put myself on a strict diet and I watch everything that I eat I stay away from anything that has a lot of salt and I also stay away from caffeine absolutely no sodas. After about a week I hope to start my workout regimen and start losing some weight. I do feel tired on most days and today I did wake up with a headache I have read that the drug that I take has severe interactions with other things such as aspirin and you should not be taking aspirin with the acetazolamide. I believe Tylenol would be okay but I would ask the pharmacist to make sure. I don't smoke I don't drink I don't do drugs so I couldn't tell you what the interactions are with that but I know that when I consumed a high sodium meal that I got a headache the very next day. In my opinion I believe this happened because number one I'm overweight number two I wasn't eating very healthy was consuming a lot of chips candies ice cream sodas everyday and I also had started taking my birth control and blood pressure medicine at the same time and number three I was under a ton of stress on the homefront and with work and with school and I believe it triggered something. Like yourself I had thought it was also a pinched nerve and I had gone to a chiropractor and had an adjustment done which did improve my neck pain. I'm really sorry that your daughter is going through this she does not seem like a candidate that would have something like this so that does baffle me even more and it is quite bothersome. In my opinion I would change her diet and avoid caffeine avoid sodium and have her drink a lot of water and eat a lot of fruits I have done hours upon hours of research online on avoiding grapefruit juice avoiding carrots avoiding liver avoiding foods that are high in vitamin A. I would also recommend meditation for her and lowering her stress levels.

Thanks for the replies. She goes in next Thursday for an appointment with the Neurologist. Hopefully they can give us some good news. It is always a big fight with our insurance to get her to be able to be seen by the Optho Neurologist. The Optho Neurologist told me last time we were there to not go more than 1 month with her optic nerves being seen. Our insurance really doesn't seem to care though. It has been 3 weeks now. Still have no idea if this Diamox is working or not? I don't think she is magically going to go from very poor periferal vision with a blind spot to being able to see clear really quick. With no other symptoms besides the swollen optic nerves and very high opening pressure the only way we can tell if the medicine is working is to have the field test and look at the nerves up close and compare them to the last reading or get another lumbar puncture. She hated that bad! Hopefully good news on Thursday. Good luck to all of the sufferers. I hope you all get better soon and can resume a normal life style.

I had a brain aneurysm that they found after a 95 day headache, with extreme pressure. They put a stent in and I continued having issues. I was on huge amounts of topomax. They took me off that and did a a 2nd spinal tap that had high pressures again. They diagnosed me with Psuedotumor Cerebri this year (2017). I am still having pressure, headaches, dizziness, ringing in ears with fluid draining out of them. I also have tingling in hands and feet which got worse once my Neurosurgeon put me on diamox. I was taking a 125mg at night and he just uped it to 500mg twice a day. I feel that my symptoms are getting worse. I cannot do anything because I am exhausted all the time. I have bad head and neck aches.