I have been experiencing symptoms since feb 2015, headaches, vision loss, tinnitus and imbalance.  I was diagnosed with anemia, further defined, vertigo and migraines.  I lived with more episodes of visual disturbances for over a year before being diagnosed with IIH July 2016, with MRI and spinal tap of opening pressure of 37.  Diamox at 250mg to increase to 1 g and 30 lbs of weight loss has helped somewhat, but my spinal tap in January had opening pressure of 52, and my sight is declining. I am now at max dose and my sight is declined with horrible headaches. I have a surgery consultation tomorrow, but from all the reading of failure and revision rates scares me, as well as the possibility of not having the surgery going blind or suffering from a stroke due to the increased pressure.  It's been difficult because I can give my family and friends all the handouts I can find on this condition but it's hard to talk to them and hear the responses.  Ibuprofen and glasses can't fix this.  If it were that simple:|.
I guess I'm afraid I may not be a surgical candidate and things get bad fast or I am and have to keep undergoing surgeries.  

UPDATE...

20 min consultation with the take home message of lose more weight.  Pretty much said a shunt would be more trouble than it would be worth it for me in the end.  Then was given handouts by receptionist about losing weight the healthy way.  Can't feel more depressed or alone right now.

 Ok, this infuriates me!!! Unfortunately, you are not the only person turned away because of your weight. You cannot have an opening pressure of 52 with declining vision and be sent away with a pamphlet!  

You've lost 30lbs, but your pressure has continued to increase and your vision has continued to decline.. this is unacceptable. I know I'm not helping, but to just dismiss you with a plan of "lose more weight" is RIDICULOUS! The medical community is biased because the largest population affected by IIH are overweight women of child bearing age and telling us to lose weight is the simple solution, but IIH affects people of all genders, ages, sizes and weight loss isn't always effective.

Shunts can be unpredictable, but I was diagnosed with IIH in 1999 and have had a shunt since 2002. I couldn't function prior to the shunt placement, but working fulltime since 2005. VP Shunts were just experimental at that time, so I had a LP shunt. I did have to have revisions every 2-3 years, but it was still better than losing my vision and being bound to the recliner because of the debilitating headaches. I've had a VP shunt for a couple years now and it's MUCH better. I almost feel normal again and grateful for it. Just remember when researching these procedures that people that post are usually still struggling. There are people with IIH that just have one episode and some improve greatly with medications or surgery, but we usually don't hear from them.

My suggestion is to get a second opinion. I understand if they're offering other suggestions, but  losing weight will not stop your vision from deteriorating now. I'm so sorry!!! It is frustrating and disheartening, but you just have to keep talking to specialists until someone hears you. If the weight loss was helping, your pressure wouldn't be increasing and causing more visual decline.

Who is prescribing the Diamox? I would talk to them about the possibility of adding Lasix or another diuretic.. something to help with symptoms until you're able to lose the weight or get another opinion. Maybe even get a referral for a neuro-ophthalmologist to discuss optic nerve sheath fenestration. There are stents and other options, if a shunt seems like too much of a risk..I just can't believe they mentioned nothing.

If nothing else, I hope you walk away knowing that you're not alone. We have all been there in one form or another, so hang in there and let us know if there's anything more we can do. We'll do our best to get you through this.

Take care,
Julie

yes, definitely, second opinion ASAP!  declining vision is a medical emergency.  ONSF might make the difference so that you protect your vision as you continue to lose weight and see if that will ultimately help the rest of it.  some have gotten gastric bypass to help with weight loss but it sounds like you have done an admirable job, 30 lb in about 8 months is good.

if you have not seen a neuro-ophthalmologist, you must.  if you can't get in within a week, I would go to the ER at the university hospital that has the neuro-ophthalmologist on staff during some acute visual changes and tell them you are worried about sudden vision loss and ask them to call the ophthalmologist on call.  they can refer you urgently from the ER to the right doctor.

Thank you both for your input!  I did follow up with my neurologist and left a message in regards to my surgical consult and how I felt my vision was declining more since I last saw her in February.  I couple hours later, I received a call back that they had scheduled a spinal tap for the morning to relieve some pressure and that they were following up with a referral for optic nerve sheath fenestration to assist, but to continue with medication as planned.  I had the tap yesterday and today, her office called me back to find out how I was feeling and that if I did not hear from a specialist by early next week, give them a call back so that they can follow up. 
Thank you again.  I would not have thought about contacting her office to see if they could do something for me.  They have been amazing throughout this whole ordeal.

Thanks for the update. I'm so glad you've finally gotten some relief and found someone invested in helping you!!!

Good luck with ONSF and please keep us posted!

I have optic nerve surgery scheduled for the end of the month.  I am glad that things are moving forward.  I am just worried that because of the severity of loss in one of my eyes, that it maybe too late.  I know I will not know until the surgery, it's just a new concern.  Starting to feel like there will continue to be some kind of looming worries.
Thank you all again!

well, IIH is the gift that keeps on giving.  even after you think you have gotten to remission, there's always something left.  some residual.  you will never be the same, even if you get back to a functional baseline.  I am just grateful to be here, and I cope with what's left.  we will be here to support you and we will pray for some vision recovery for you!  I hope the procedure goes well, keep in touch afterwards.
Deb

I'm glad they're moving forward with ONSF and hope you'll regain some vision! I think it's normal to have concerns and just have to focus on the best possible outcome. Remember to give yourself time to heal and adjust before coming to any conclusions.

I honestly feel like everyone has something to deal with in life, whether it's financial, physical, emotional, etc and IIH is just my thing. It seems to ebb and flow, so just be diligent and do the best with what you have. I'm sorry you're struggling, but hopefully that ONSF will help. Please keep us posted, and take care!

Julie

UPDATE

well I had ONSF surgery on my left eye 3/30.  At this point I am dealing with vision that is somewhat worse prior to surgery. I hope that this changes over time.  Daytime; vision is blurry and in the evening, lights have increased halos.  I had my post op follow up and I'm going for another evaluation consultation to another neurologist-ophthalmologist to determine if surgery to the right eye will be needed.  That's scary because it has been consistently my stronger 20/20 eye.  Also a shunt down the line is still something they want revisited.  It's hard because you feel like your not being listened to; you go to all these appointments and you get carted to 3 more doctors with no resolution, but then you start to think; what more can they do?  What more do I have to endure?  Will there be an ending I'm happy with?   Some days I feel that the IIH episode of my life is being written by Vonnegut if he were still with us.

I'm sorry that you haven't gotten the assistance or outcome you had hoped! Hopefully your left eye will continue to improve with healing and you won't need ONSF on right eye, since primary goal is to save vision. A shunt would be a last resort, if unable to get your pressure under control.

It can be frustrating and disheartening, so hang in there! I do fairly well most days, but still hit a wall from time to time..usually because I'm coming down with something or I've done too much. My neuro-surgeon's PA just reminded me that "perfect is the enemy of good". Basically, we will never be as good as we were, but we can still be ok. It's a matter of learning your triggers and limitations, then making adjustments and choices. I like the Spoon Theory and use it to explain my limitations to family and friends..the ones that matter get it. Take a look and see if it helps to put things into perspective for you (https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf ).

The unknown is scary and I don't know why bad things happen to good people, but we are here to support you as best we can. Keep us posted and take care!!!

Julie