Hi, new to this forum and so thankful to have found you all!
A quick background: 6 years ago during an MRI the neurologist found that I have empty Sella syndrome (side question: does everyone with IIH have empty Sella syndrome? ). Since I'd never had any issues due to it thus far in my life he said to just make sure to tell my eye doctor to check for excess pressure and sent me on my way. Fast forward to last Friday when I had the most debilitating headache, neck ache, back ache of my life. I know you all have been there so I don't need to go into detail.... I ended up in the emergency room and after CT scan and lumbar puncture got a dual diagnosis of vital meningitis and IIH. My opening pressure on the lumbar puncture was 57, closing was 18. Started me immediately on 500mg Diamox daily, tapering up to 1500 mgs daily over 10 days. I am feeling so much better - the meningitis is nearly gone but much of the IIH symptoms persist. The loud whoosh of my heart beat in my ears, my eyes are painful. Head ache is very minor, but still present. But the side effects of the Diamox are crazy. My whole face tingles, my hand and feet tingle. My stomach is upset. Food and drinks taste weird. I'm just kind of freaking out about the whole thing! I called the neurologist for a follow up appointment and his office says there's nothing open until April! Tomorrow I'm just going to call around and try to find someone that can see me sooner.
Now that I've typed this all out I realize that I don't actually have any specific questions, I guess I just want to know if my story sounds familiar to you all and if you have any advice for me. I'm feeling pretty scared at the moment.
Thank you do much for taking the time to read, I appreciate your time. (I am 5 ft 5in, 175 lbs, 40 yes old, female)

hi Sarah;
I am so sorry for all of your troubles with this.  I will try to address your issues.

not everyone has empty sella.  however, I believe I have some signs of empty sella without seeing this on MRI.  there have been studies showing this can happen, that there is hormonal evidence of empty sella without seeing it abnormal on the MRI.  so this begs the question of what is going on with your hormones?

The ER should have referred you to a doctor on call who could see you in a reasonable time period in follow up from the ER.  They should have had a neurologist on call to take their referrals.  I would call the ER and ask them to find you a doctor who can see you pronto.  you have not mentioned your eyes; you need to see an ophthalmologist, preferably a neuro-ophthalmologist who can assess your optic nerves.  from talking to people online I am not impressed with the ER's ability to assess this properly.  maybe you can get in with an ophtho sooner than the neuro.

weight is not always the issue but it is always a good idea to lose some weight.  it didn't help me, but it does help some people.  also obstructive sleep apnea worsens at age 40 and it can cause and/or worsen IIH.  it's a good idea to get screened for this.  did you ever seen an endocrinologist after the empty sella diagnosis?  I think that getting hormones tested is a good idea.  did you really not have any symptoms 6 years ago?  why did you see a neurologist and have an MRI back then?  when I crashed into IIH my headaches had actually gotten better but my brain fog was disabling.  different people are different.  

Deb

Thank you so much for your reply! Starting with your last question first, six years ago I was having episodic hearing loss in one ear and the ENT couldn't find anything wrong. Then, during that same time period, a severe case of vertigo struck me (first time and only time, so far, at least). I told my PCP about that and he referred me to the neuro who wanted an MRI to see about a tumor since hearing loss and vertigo can be symptoms. The neuro said something along the lines of, clearly my hormones are working fine as I have normal periods, got pregnant and carried the baby to term. I think your advice to see an endocrinologist is great, I'll look into finding one. I never would have thought of that!

I called two other major neuro clinics in town and they told me the same thing, no appointments until March or even April. They would also need a referral from my PCP. I was incredulous, apparently the ER referral only works for clinics associated with the hospital I went to, other clinics don't recognize it. By my last call I was pretty fed up with this and pointed out that I only got a 30 day supply of Diamox from the ER, what was I to do when that runs out? They advised my PCP can handle it. My brother is a family medicine doctor (PCP) and he said, well, technically that's true, but it's not something he as a PCP would feel comfortable doing- that he'd advise his patient to see a specialist for this. (He's been furiously trying to research all of this stuff for me but he's, obviously, not a neurologist..and busy with his own practice .)

So, I think my plan should be call the ER and tell them the trouble I am having getting an appointment, find an endocrinologist, and find a neuro ophthalmologist. And lose some weight.
We have the Casey Eye Institute here at Oregon Health & Science University, so that's probably a good place to start.
Thanks again!

The Intracranial Hypertension Resource Foundation is also housed in Oregon, I think, so maybe they would have resources for you (http://ihrfoundation.org/hypertension/info/C85). I know they at least have information on finding a doctor and list of resources.

I was diagnosed with IIH in 1999 and just recently diagnosed with Empty Sella Syndrome last year, so I also don't believe it happens to everyone. My ENT found it and PCP explained it to me after neurosurgeon confirmed it. They basically just did a MRI, CT Scan, and hormone panel and I have to go back for yearly check ups. I'm honestly not sure how it affects me.

Yours is unfortunately a familiar story, but I'm sorry that you're struggling to get the help that you need! We always encourage our members to be as healthy as they can. Weight loss works for some and not others, so doesn't hurt to try. I would definitely have an evaluation by neuro-ophthalmologist (who can also prescribe the Diamox) and make sure your vision is holding. Some members have reported that they eventually get used to side effects, but others are unable to tolerate it and try other medications. Check the General Information section for other options.

I hope you're able to find some relief soon, but let us know if you have any further questions or concerns.

Take care,
Julie

hearing loss and vertigo are symptoms of Meniere's disease.  which, guess what, is caused by increased pressure in the endolymph of the ear.  which, guess what, is contiguous with cerebrospinal fluid spaces.  and guess what, the treatment is Diamox.  I am just waiting for medical science to catch up and realize that Meniere's is just a part of IIH which is not rare at all.  might happen in my life time, maybe not.

you are fortunate your brother is a doc.  hopefully he can advocate for you.  if there is any way he can go with you to appointments, you will get much better service.  I'm quite sure that if IIH was an illness that affected primarily men, that we would know a whole lot more about it by now.

Hello again! I thought I'd pop back in for a little update since it's been awhile. I was (finally) able to come under the care of a neurologist who did more testing - MRIs and full panel testing of the CSF (mainly just to rule out other diseases). As it did 6 years ago, the recent MRI also showed the Empty Sella configuration. She confirmed the ER doctor's diagnosis of IIH and referred me to a neurosurgeon. I have not yet seen a neurosurgeon (for a few different reasons...). 

I am continuing to take 1500 mg/daily of Diamox and have added Lasix (not sure of the dosage) which has improved the amount of time I need between lumbar punctures dramatically. On the Diamox alone I was having an LP every 2-3 weeks. With Diamox and Lasix I can go 6-7 weeks between LPs. Opening pressures are typically around 30 by the time I get an LP.  I have settled into a pattern of having an LP, feeling great for awhile, then slowly feeling worse and worse until I need another LP. 

I am on a waiting list to see a neurosurgeon to see about a shunt. Part of the reason it has taken so long is because I had to switch providers recently to a completely different health care system. I am now going to be treated at OHSU (Oregon Health Sciences University) - a teaching hospital with a much wider base of specialties and practitioners. 

I want to  all for reading along and commenting - as you all know, this can be a very isolating disease and I appreciate knowing you all are there. I'll update as circumstances change. Thanks again!

hi Sarah;
I'm glad you are doing a little better. I like Lasix too.  it's good you are finding better doctors. good luck with the shunt!
Deb

Sarah, it's obviously been awhile since I checked posts, but I'm so glad the Lasix was helping. Have you been able to have a consultation regarding the shunt yet?