I was diagnosed with psuedotumor or iih 17 years ago i have been on fentanyl patch for 9 years that works great on head pain at times i feel like nothing is wrong except for normal headaches and rebound narcotic headaches which an 800 mg ibuprofen gets rid of it.but as of last month my dr is taking the fentanyl away and i have been suffering ever since with severe head pain like my head is getting full and going to explode.i try explaining to dr but she doesnt want to listen and honestly i dont think she has any clue about this condition.ive seen 7 neurologist and 4 neuro surgeons and all 4 surgeons gave told me yes i can put a shunt in but youll still be on heavy pain meds due to shunts clogging and letting out to much spinal fluid also my neuro opthamologist said shunts are just a band aid and used if going blind to save vision.does anyone else take any kind of pain meds for it and has ur dr taken them away.this is happening in the usa only that i know of

are you seeing a pain medicine specialist?

Yeah, that definitely sounds like a pain specialist remedy.

I've honestly never heard of anyone being treated for IIH with pain medication like Fentanyl with nothing else. And, any time I started getting rebound headaches they took whatever was causing them away, including something as simple as caffeine. Is your IIH secondary to another condition or are you being treated for something in addition to IIH??

IIH is an issue of an overproduction of spinal fluid that raises the pressure in your head, so appropriate treatment would be to relieve that pressure by trying to reduce fluid. They can do that with several medications and shunts. There are also procedures like optic-nerve sheathing and stents that can help reduce pressure/preserve vision, depending on different physiological factors and response to medications, etc. Vision is the main factor, but not the only consideration when evaluating the most appropriate treatment.

I would start with finding new specialists. I was given pain patches to treat migraines, but it didn't help because my shunt was overdraining and the headaches were from low pressure. Any pain medication would just mask symptoms and not treat anything, so this is very disturbing to me.

No other condition other than that i know what rebound headaches are i usually take ibuprofen for that but now dr is lowering the fentanyl from 100mcg patch which worked well to 50mcg and my head is killing me ive been bedridden with loud whooshing in my ears.ive been to 6 pain drs all have said if the 100 patch is working dont mess with it but now these new opioid laws have got my dr all scared about overdoses and law suits i can not tollerate my head now going to new dr on 18th hopefully he will atleast give 75 patch i dont want 100 again cause the one good thing ive noticed being off the 100 is the rebound headache.my idiot dr keeps throwin headache medicine down my throat and im tired of it..if i want to get rid of what i call normal headache 800 ibuprofen does the trick

I have had the optic nerve surgery since lost all vision in right eye and 40% in left.i was on diuretics which ive told my primary care dr she should have put me back on them but she wont.thank god going to new dr one i got is an idiot

Well the drs took the fentanyl away and life has been miserable i had many mri and always asked when drs said their was a pretty good size cyst in brain.always asked if that could be a problem and always got a no answer but now I am wondering because my neuro opthamologist has told new dr that he didn't see much fluid behind my eyes to think i had iih anymore but yet i still have pretty bad debilitating pain that pretty much has me bedridden.i can only guess 1 i still have iih 2 the cyst is doing something up there or 3 the fentanyl was doing it which i doubt very much cuz except for a few rebound headaches i was pretty much 99% pain free.i got a appointment to see another neurologist but he can't see me for over a month still and with fentanyl gone its been hell.i got to find another i cant sit here like this for another month ive already did it for 3 weeks...

I was never on anything strong. I was on norco 7.5mg and ultram 50mg for a short stent but my dr took me off of both because the combo of diamox and topamax seems to be working most days. I still have the helacious days that nothing helps, but NOTHING helped before either. I take the 3 ibuprofen and to acetaminophen and focus on breathing. I have a lot of stay in bed days too.
I don't think I am understanding completely. Is your pressure increased due to the cyst or is it idiopathic? 
I hope that you can find someone who can help you with your pain and a lot sooner than a month from now!!! I believe that a lot of doctors have become afraid to prescribe pain meds to anyone because of the waves of drug abuse. It is truly sad that the people who really need these medications to survive the days are not able to have them because some have chose to ruin it for them.
Please keep us updated! Take Care! I'm hoping for a pain free future!

Chris, I'm so sorry! You definitely need to figure out whether they're treating a cyst or IIH..I would think treatments would be VERY different. Also, just a side note..you don't have to have papilledema to have IIH, so not sure your neuro-ophthalmologist knows much about what he's doing either. Unless he's just saying that it's not currently affecting your vision, which would be great news considering the pain you're enduring.

How was the appointment with the new neurologist?