ask him to review the modified Dandy Criteria.
take a look at this paper if you can get access to it.
http://www.ncbi.nlm.nih.gov/pubmed/?term=23594732
PM me with your email if you can't, I have it. it says:

The diagnostic
criteria for IIH as defined in ICHD-II [10] are as
follows:
(1) Progressive headache with at least one of the
following characteristics and fulfilling criteria C
and D:
(a) Daily occurrence
(b) Diffuse and/or constant (non-pulsating)
pain
(c) Aggravated by coughing or straining
(2) Intracranial hypertension fulfilling the following
criteria:
(a) Alert patient with neurological examination
that either is either normal or
demonstrates any of the following abnormalities:
(i) Papilloedema
(ii) Enlarged blind spot
(iii) Visual field defect (progressive if
untreated)
(iv) Sixth nerve palsy
(b) Increased CSF pressure (>200mmH2O in
the non-obese, >250mmH2O in the obese)
measured by lumbar puncture in the recumbent
position or by epidural or intraventricular
pressure monitoring
(c) Normal CSF chemistry (low CSF protein is
acceptable) and cellularity
(d) Intracranial diseases (including venous
sinus thrombosis) ruled out by appropriate
investigations
(e) No metabolic, toxic or hormonal cause of
intracranial hypertension
(3) Headache develops in close temporal relation to
increased intracranial pressure
(4) Headache improves after withdrawal of CSF
to reduce pressure to 120170mmH2O and
resolves within 72 h of persistent normalization of intracranial pressure.


If you are not obese, you clearly meet criteria. if you are obese, you need to ask your NO, was your ICP 25.0, or 25.1? because according to the modified Dandy Criteria, if your ICP was 25.1, then you have IIH. and if it was just 0.1 cm H2O lower, does that then mean that you don't have it? when you had improvement with removal of CSF? when all the triggers for ICP make you ill? when you are improving on Diamox?
take a look at this paper:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/
which suggests that much lower ICPs are still significant.

mine at diagnosis was 23. I was barely functional. I had jaw surgery and my ICP is now 14 and I'm in remission. take that to the bank and tell me that 23 was normal. my A%$#. there are people on here who have had papilledema at 11. who lost vision at pressures below 20.

Hi nina: did your employer ever offer a long-term disability insurance option? Or were you eligible only for the concurrant FMLA + state disability? Is the state program a short-term 52 week benefit period?

Based on the collective experiences of those here, it seems that IIH is not a quick heal or fix. Understanding the financial pressures, it might be best to think of how you would fare should your symptoms decrease and/or increase over the longer term in relation to your capacity to perform work regularly. In Jan 2015, you should be eligible to apply for SSDI.

While medical DXs certainly drive much of a definition of disability, the litmus test lies in Functional Capabilities and Limitations as I'm sure you're well aware with your state disability program. The key is to make sure that you've got a strong doctor who's willing to be the air traffic controller for all the specialists and their clinc notes & statements (mine is my PCP). Disbility remains a definition based on your ableness to fulfill job duties in light of the limitations your medical condition(s) evoke.

So, even if your NO may not be convinced (until you present Sophiasmom's & other info), that does not mean you're all of a sudden more able WITH ASSURITY of holding down a job of adequate gainful means. Can you say for certain that you'll feel well next week or the week after?

Whenever you see a doctor, be sure to state your symptoms new & ongoing and how these effect your daily life.

I have had multiple crazy-a** DX over the past 2 years, including IIH for nearly 1 year. But, it was the consistent functional assessment that proved immutable to LTD and SSDI.

Hi Nina,

I am sorry that you are going through such a tough time. Wishing you much support.

Just to say this is a tough sell. some doctors are very set in their ways and dont want to take advice from a lay person - or see patients collecting information from the internet as hypochondriacs desperate to make their symptoms fit their theory any way they can.

You must go into your appointment calm and strong. Try to be resolute and stick to your guns but cool and collected. (It is hard not to be emotional, you are in a lot of pain and there is a lot of history and a lot riding on this decision - but you dont want the Doc thinking there is any element of hysteria to this Dx).

Best of Luck!

Keren

Nina,

The time before diagnosis is so hard. I'm glad he has you on appropriate treatment anyway. Know that future LPs on Diamox will probably result in lower opening pressures.

CSF pressure can change from day to day, hour to hour, minute to minute. My OP was 25 on a few occasions and my neuro was more or less on the fence, but he treated me for IH anyway after the first LP. I had to go off Diamox at one point (metabolic acidosis) and he took that opportunity to do another LP a couple of months later. My OP was 30 off Diamox and no more uncertainty. Back on the Diamox, with whatever measures it took to keep me on it. It does help take my headaches down a notch, and I rarely get a 10 that lasts over a week these days. (yes, that's good!)

If you have too much trouble with disability insurance, hire a disability attorney. I don't know how they are compensated for state disability, only federal SSA (take their fee, a max of 6K, out of the lump sum back payment). IH is kind of unknown and isn't itself a qualitfication for disability like kidney failure/dialysis or cancer/chemotherapy is. .There may be another approach or condition you aren't thinking of that could apply. In any case, document, document, document your headaches by day and other symptoms, and what you can't do each day because of them.

Big hug.

Thank you all for the info and kind words of support. I sure wish This thing manifested itself as bright purple dots on my face, so they could take one look and say, yep, you have IIH.

Sophiasmom- yes, i am obese and therefore it is that much more difficult to diagnose based on the LP alone. But the info you've provided gives me more to go on, so thank you.

PressureCooker-yes, my employer did offer LTD and I've applied, but they are having are hard time getting the doctors to give them a diagnosis. Ugh! Your point about ability to do the job is well taken and I will continue to keep that in mind, beyond the "I just don't feel good" mindset. Sometimes with the tunnel vision that comes from the pain, dizziness & nausea, its hard to focus on anything but how I feel.

Keren- yes, great advice about remaining calm. I've been through 4 PCP's with this thing, and have found that most don't want to be schooled. But, properly timed interjection of info, just to show that I do know a little and that I won't settle for "you have headaches", can go a long way. It is a very fine line though and its so pathetic.

SeaSprite- good info about the disability attorney. I will definitely start that search.

Thanks again!

Blessings, Nina

Oh Nina, I so understand and am very sorry that you're hit so badly with this. It is nearly impossible to think of anything but that you feel physically terrible plus the stress of having to feel terrible and dealing with doctors who don't get it. Sending tons of empathy.

One thing you might consider since you've applied for LTD, is to buy an hour or two of attorney time with counsel who's well-versed in private disability. The differences between SSA/SSDI and private LTD are notable and often times contradictory. If your employer acknowledged that you are sick enough to have benefited from an extra month of FMLA and you still lost your position due to illness, that in and of itself is helpful for an LTD application.

And, if you can get your current PCP to complete a Functional Capabilities & Limitations type form that demonstrates your inability to perform even basic life/job duties, that is supportive to your application as well with or without a formal DX. Theoretically, you could be in the middle of a diagnostics phase without confirmed DX and still be very much eligible for LTD.

Getting Attending Physician Statements from treating doctors is a bear. They don't want to do the paperwork most often. I've found it helpful to write out all my symptoms and schedule an appointment solely to complete such statements with the doctor right then and there. I've heard that some doctors charge to do so, but in terms of disability payments, I would think it a necessary evil.

Since there are very few states with state-funded disability programs, I'm unclear how your state benefits would off-set any private LTD benefits. Again, a question for an atty.

To give you some hope, I did get private LTD + SSDI based solely on symptoms and diagnostics - no formal DX. It was/is the headaches + fatigue + low vision + ongoing condition resistant to treatments (few TX so far) + my age (51) that made the case. But, I've spent nearly 2 years doing nothing but going to doctors and enduring tons of testing and trials. I've kept a detailed diary of nearly everything -- including how much time I can sit & stand up, walk about, when I have to lie down, how much I sleep, what I eat, pain levels, other symptoms, etc. This journal is horrifying to keep up with, but sure helps demonstrate that I can't function for more than about an hour at a time without having to stop everything and lie back at an angle for 1-2 hours.

Maybe your neurosurgeon or ENT would write a statement to help you while you deal with your NO and settle in with a good, strong PCP?

Let us know what your NO says & hang in there.

and regardless of how much you weigh, 20-25 is considered borderline anyway. so if you respond to treatment of IIH, then it IS IIH.

Maybe a new Dr is in line, or blasting this Dr with articles on lower pressure IH. My op was 11, closed at a very low number and this reset me, so to speak. I felt great, I had paps and low pressures. So their criteria isn't a one size fits all. How do your mri's look?

NO had to cancel due to jury duty, so nothing to report yet.

Mary- my MRI was fine, didn't show anything.

Nina

Your symptoms sound so similar to mine! No visual disc edema? In any case, I'm so sorry for your frustration and discomfort. Having my own business & working from home has helped my family greatly financially (and the products my company sells helps my weight loss and health overall, therefore also helps my IIH!). Would love to talk to you more about getting you on your feet, too ~ itworkswithtessat@gmail.com (just in case this doesn't allow links my email address is itworkswithtessat at gmail) :)

OH HAPPY DAY!

Thought I'd share the latest. Heeding your advice and with your words running through my mind, the stars have fallen into the correct alignment and well, today my NEW NEUROLOGIST put the diagnosis in my record. As we'd all concluded, IIH is the culprit, in addition to cervicogenic headaches.

Considering the LTD claim was denied just last week, and I've already consulted with legal counsel, this will go a long way in the appeals process.

I can't even begin to thank you all for the support and feedback. Its made a big difference on my outlook for the future.

Hang in there,

Nina

Nina: this is wonderful (?) news and am glad that you're headed in a good direction. Sorry that you've got this darned "thing" at all, but sounds like your new neuro is miles ahead of your former providers. Hang tight during your appeals process and remember that you'll need to apply for SSDI the minute you're eligible -- not just for your own security but to satisfy LTD requirements as well. Thanks for letting us know how you are! Best, PC.