I had never heard of it but googled it - so they basically think you have conversion disorder? How frustrating! I wonder what they have in mind by "retrain your eyes." I did vision therapy via an occupational therapist for "ambient focal disorder" awhile back. It could be useful to you if it is something along those lines. It doesn't get at the underlying cause, but from what I understand, in spite of the underlying trigger, our eyes can become kind of lazy about focusing and therefore can still benefit from certain eye exercises to help get them back on track. I don't have a good understanding of that field though, but thought it was an interesting, risk free option.

Do you have fatigue? Chronic pain can be very fatiguing. Visual blurring can be related to that too, and is not something your NO can quantify. Which is not to suggest in the slightest that it is unrelated to your IIH, just that I think all those factors can become intertwined and make things even less clear medically.

That's great that your psychiatrist gets it. It's too bad that health care has such a bias against mental health care (in my opinion) in that once there are notes of a psychiatric issue, other medical issues that are difficult for the mds to explain tend to get attributed to that. You would think that with how very prevalent anxiety and depression are these days we would have gotten better about that by now. It's a cop out. Sorry, I am totally with you on the doctor frustration these days! It's very difficult to find a good NO that you trust, having a rare disorder stinks! Especially when half of the NOs don't seem to be up to date on diagnostic criteria.

Yes, NO indicated conversion disorder. Which pissed me off as there was no other concurrent DX that took into account the chronic pain, fatigue, and ICP (which of course is high for me but too low for them to acknowledge). My vision worsens when I feel my pressure rises. Duh.

Of course, I'd be up for vision therapy if it didn't also include the underlying premise of psychogenic issues. As most on this board live this every single minute of every day, I'm assuming that we all have some sort of Fail Manifestation(s) because we're fighting pain + symptoms all the time. My Fail happens to be my vision. And I can understand that the stress of chronic pain can contribute to Fails, but believe that stress doesn't exclusively cause a Fail because stress doesn't exist in a vacuum.

The bias against mental health issues is driven greatly by insurance companies, too. I'm not feeling very friendly towards docs or insurance these days because of my crappy DX of late.

I'm not sure I should take this referral back to Neuro-Psych or not. I work with 2 Psychiatrists already (1 prescribing, 1 for therapy) and as you've said, I am so lucky that they're supportive. Will ask them what they think of this latest conundrum.

Thanks, RN. Sure hope you have a good day!

what a freaking cop-out! I would be so pissed! they are guilty of malpractice, for not acting to save your vision!
http://www.ihrfoundation.org/intracranial/hypertension/info/C20
see Myth #9.
get a 3rd opinion, 4th 5th 6th or as many as you need until you find a NO who knows wtf they are doing. maybe you should just go to Hopkins. the NOs there are very good, from what I've heard.

Sophiasmom: it IS a cop-out, I think too. I'm just so smacked down by my patient encounters there in last couple of months. Got another jaw-dropper yesterday when Pain Mgt told me they will only manage injections, not full med treatment. Neuro told me I was referred to Pain Mgt specifically for full med treatment.

So, I was administered nerve blocks (no effect yet, but could take 2 wks), and that's the beginning and end of any treatment other than the 2000 mg of Diamox I'm currently taking. WTF indeed!

So now find a doc (and some money) and get a referral to Hopkins I guess. Am very despondent to have to start all over for Round III.

How the heck am I supposed to explain notes that say Functional Vision Loss and "prior pseudotumor"?!?!?!

PressureCooker, do you have a good primary doc? If I remember correctly, was it your neurologist who was being lame about your last LP? I am trying to think of how you can support your credibility when you seek out another opinion with those stupid diagnoses on your records. Is there any doctor who is supportive that you trust who could help you with a referral, and perhaps reach out to that doctor on you behalf? Even if your primary doesn't know anything about IIH maybe s/he could still help advocate for you.

I finally had enough of my first NO - who is more knowledgeable than most, it seems, but unfortunately quite dramatic and quirky and eventually became it became anxiety-producing for me to see her (a bit weird but I really don't want to see her). My second NO is nicer but I have serious doubts about how seriously he took my issues as he seemed to really want to erase my PTC diagnosis. Which meets the modified dandy criteria clear as day, just not as drastic as some. So frustrating. NOs aren't exactly a dime a dozen, right?!? And while it is important to seek out as many opinions as needed, it can change the way a new doctor views a patient. I plan to see the new guy one more time - I will usually see a doctor twice before I decide for sure unless they are really bad. Then I will either see a 3rd NO I have picked out or just stick with a neuro I like.

Why is it so much to ask that the NOs get their act together? They are specialists within a specialty for God's sake. Even for a rare diagnosis - most of them see a lot of PTC. Why can't they read the website sophiasmom linked and get their acts together?

Just wanted to emphasize. I too have spent way too much time having to worry about how to find a doctor who can be reasonably trusted to take good care of me! Have a good day!

Thanks, RN. Yes, I do trust my PCP; but as you mentioned she's not specialty-trained on IIH. BUT, she does get the basics and agrees that a pressure of 23 is too high, the HAs & vision loss I have are not irrelevant, etc.

Her & my biggest hurdle is how to navigate a "quicker" 2nd/3rd Neuro opinion locally to support a referral to Hopkins or Stanford, etc. Because I moved my care to this large university 1-1/2 years ago, I inadvertently fostered a bias. Most Neuros here have some connection to the university; the university is pretty much the sole place to find more than 1 NO; and is so well respected that it'll be hard to find a doc who'll take the brave political step of countering my recent DXs. Practice bias runs rampant.

Add in the factors of already DX'd depression as a result of this medical nightmare (mild) plus a mild mood disorder I've had since forever but has always been well-controlled by little amounts of meds, and I'm worried that new docs will default to 1) your numbers are too low to have IIH; 2) your eyes are fine per NOs; 3) oh, it's all in your head and you're clearly doc-shopping just to support your perspective.

My Psychiatrists are VERY supportive that my mental health is pretty solid considering and that this is not all in my head. I just don't know that new docs will actually read reams of files to get to the nuts & bolts of this.

I remember your writing of your NO issues of quirky vs. dismissive -- am so sad you've had to go through this. Do you ever get so tired of it that you start re-checking yourself? Wondering if it's you and not them? That's where I am hovering right now after so many "rebukes".

I wonder the same thing about NOs. The little experience I've had with them, it seems as though there's a prevalent out-of-date culture in what is a burgeoning field. The minute these NOs determined my optic nerves are healthy AND that they saw my latest LP came in at 23, it's as though the doors just slammed shut. It's 25 or nothing. If they can't stent/shunt/ONSF, then the condition doesn't exist. Whack jobs.

Thank you for your support, RN -- invaluable to hear objective voices and input. I hope YOU have a great day.

I was diagnosed at 23!
there are people who have lost vision at lower pressures than that!
it's THEM!!!!!!!!!!!!!!!!!!!!!!

never doubt yourself. keep putting one foot in front of the other. getting proper treatment with this is a mudslog.
bring a print out of the IHRFoundation website page and the CFS/IIH paper that shows patients with CFS have symptoms caused by ICPs lower than yours.
get a sleep study and treat your sleep apnea and that alone may reduce symptoms.

do you think you could show these things to your very supportive psychiatrists and ask one to write a letter that summarizes their position that your condition is NOT in your head? that is actually very powerful. most psychs I do not trust for a moment because they seem to not hesitate to label you with diagnoses of exclusion when they are not qualified to exclude anything. but a vote like they have will make any new doc pay attention, and a summary letter will be easier for them to read than your reams of medical records.

Thanks, Sophiasmom. I agree with your suggestions and think these neuros/NOs are way over-stepping. My thinking is that until Neuros & NOs have tried even most basic & mid-level treatment options (migraine meds?), they can't default to a Conversion Order DX in good practice. It is egregious really.

I just asked one of my Psychs today if they'd write a letter stating medical necessity for & approval of additional HA treatment specifying that Neuros NOT exclude bunches of med classes just because of mental health DXs.

I could also ask if he's willing to expand on that & state an opinion on this rush-to-Conversion Disorder DX from NO. When we spoke today, he was pretty horrified about such a DX coming from an NO especially when it contradicts nearly 5 years of Psych clinic notes. At worst he said, they could leave it as "non-organic" without the further labeling of Conversion Disorder. I think that still would be rotten. But, you're right, a letter would help greatly.

That plus a summary from my PCP might, as you said, get me beyond front door for a real 2nd/3rd opinion. Will print out all you suggested. Must find a good place for sleep study as I fear my time at the university may have run out now. I'll read through your past posts for details on specifics.

conversion disorder is just abusive. with all of your documented neurological issues. I would almost consider complaining to the medical board. get a firm second opinion that contradicts that and then consider it. they need a slap on the wrist to realize they can't pull that crap on people.

this will piss you off:
http://books.google.com/books?id=m-AMO4gkTtMC&pg=PA84&lpg=PA84&dq=non-physiologic+visual+loss&source=bl&ots=HVm2rYAkup&sig=Hxv1Rwc4tW_SJx_JKxSWn8N_56Q&hl=en&sa=X&ei=DPyAU6D-M8zuoASExYHQCQ&ved=0CEgQ6AEwAw#v=onepage&q=non-physiologic%20visual%20loss&f=false

apparently you have malingering or hysteria. which one is it?

what a crock.

Thank you for this chipper little reference; what a charmer! Thing is that Senior NO found amblyopia & scotoma in 2013. Not to mention that my head IS EXPLODING. Otherwise, I'm sure the DX is relevant.

I read that Conversion Disorder is frequently DX'd in the MS Community. Bet that perks up these patients, too. My ass it does. :)

I find this really sad, I wont ever accept antidepressants for mental health reasons or a psychological diagnosis from a doctor - not because I dont believe that chronic pain and metal well being can have a strong effect on the human body, but because I firmly believe that they will never treat you with the respect that you deserve there after.
It is a very sad state of affairs because the human mind has great power over the body, you see that in things like: the placebo effect, in the effect of tension headaches, stress illnesses, in the benefit of CBT / meditation, in so many different areas. But as soon as you have a mental health note on your medical records the doctors stop investigating your non-obvious mystery illnesses and instantly chalk it up to your 'mental health problems'. Either they are too lazy to do all the test or too ignorant but they seem to see psychosomatic symptoms as the easy cop out at the moment. And we have all seen that with this disease there are plenty of non-obvious mysterious symptoms. I have enough problems self diagnosing and fighting my corner with my stupid neuros without having people waving medical records 'proving' I am also a crazy lady. So no matter how bad things get that is something I wont ever let them do, and several have suggested it when I have sobbed in the office more then once, when things were in the bad old days!
So very, very sad that the system is failing us.

If IIH were a man's disease you know we wouldn't b having this discussion. That's what pisses me off the most.

It is a system Fail indeed. Deeply rooted and taught. Like I said, I can understand somewhat that there's no obvious damage to my optic nerve/retina/etc, but to eschew the tons of research & conclusions that suggest any myriad of potential for actual visual disturbance is unconscionable. I just feel like relegating to conversion disorder is a neat and tidy way to get patients like me out of their shops, plain & simple, because they neither have the interest, resources or inclination to do anymore than turnstyle patients. Plus, there's always the legal implications of offering no DX; rather a DX of hysteria vs non-treatment. I'm being very cynical, but it seems to have bit my a**.

Sophiasmom: I hadn't thought of gender disparity with IIH, but I assume it's similar to the weight-shaming that happens, as well.

Keren: do docs really wave records at you to prove you're a crazy lady? Like if you reach out and try to grab the files from docs' hands, it demonstrates mania or something :)

I found a paper that discusses a case report of a man with IIH who lost vision in one eye without papilledema, due to a progressive optic neuropathy.
Thurtell et al J Neuro-ophthalmology 2010; 30: 94-103

they say " it is possible that raised ICP could produce intracranial or retrobulbar optic nerve compression if there is anatomic compartmentation of the subarachnoid space around the optic nerve"
"a second explanation is that sequestration of CSF containing a toxic metabolite could have produced a unilateral toxic optic neuropathy. because many patients with IIH have cerebral venous hypertension, a third explanation is that the optic neuropathy could have resulted from posterior optic nerve ischemia due to impaired venous drainage."