Hi. My name is Misty. I am now 28, a nurse living in Chicago USA, and my life has been challenging due to health issues.

At the age of 12, I broke my ankle which ultimately led to a diagnosis of juvenile rheumatoid arthiritis (which has recently been changed to undifferentiated connective tissue disease). I have characteristics of lupus, neurosarcoidosis, and multiple sclerosis but nothing is official. I get joint pain and swelling that travels around my body, inflammation of both my eyes, and as of Oct 2010 horrible iih headaches.

I had been working the night shift at the hospital in Oct 2010 when I got a "brain freeze" type of headache that came on suddenly. I thought I was tired, and attempted driving home. I had to pull over numerous times from the pain and to vomit. I couldn't think straight and just kept on home. Right away my family knew that I was not ok and rushed me back to the hospital. The docs tried telling me it was just a migraine, but I insisted on a spinal tap mostly because I am a nurse and knew what to test for. The ER doctors said they've never seen fluid shoot out with so much pressure before and that it wouldn't even register a pressure reading on their instrument. The fluid showed aseptic meningitis with high inflammation markers. I started on diamox and 2 weeks later was able to go home. Throughout my hospital stay, numerous doctors blamed my weight and I have always had such difficulty understanding why other causes weren't looked into before making a person seem so at fault for their iih. I felt judged and so very alone surrounded by people talking dlwn to me. Like I did this to myself on purpose. I found a neurologist who listens and cares, but admits that this disease isn't well known especially when there are other confounding illnesses. I also have found an amazing opthomologist who ultrasounded my eyes to diagnose papilledema because I have chronic iritis (eye inflammation) and druzen (congenital swelling of optic nerves) making diagnosis of papilledema almost impossible. I see a rheumotologist for my joints who has brought up the possibility of brain and spine swelling from an autoimmune disease which could be causing increased pressure. All 3 docs communicate about my care and yet 2 years later I am no better (maybe worse).

I have been hospitalized about every 3 months since diagnosis for spinal taps and pain control. My brain mris show inactive lesions which could be pre-ms, chronic encephalytis, and flattening of pituitary gland. I have numbness and tingling to my left hand, lose my balance often, forget things way too frequently, hearing loss, shooting nerve pain through my face and legs, severe headaches, trouble concentrating, trembling of hands, and many other bizarre things that come and go. I hate telling my doctors the little things because I fear being judged but often I will say it anyway and am told its probably nothing. No one understands at home why I have trouble getting out of bed on bad days or why I don't clean up the house often enough because it triggers headaches. My partner tries her best but usually gets frustrated and makes me stop what i'm doing so I don't end up "sick". She just doesn't understand and wants me to get over it all the while treating me like a child. I choose to keep a majority of pain to myself and pretend its ok which is by far more difficult than the pain. I finally got back to work recently and am struggling with that, but I have no choice because I need health insurance and money to live. I am glad I found this forum where I can vent when frustrated and talk with others who understand.

Anyone out there with autoimmune disease and iih who are struggling with relief for both diseases?

I look forward to hearing back from other iih members.

Hi Misty, welcome to the group! I have to say I've experienced most of symptoms you've listed as a part of my journey with IIH..aside from the autoimmune & other visual disorders. It sounds like you've endured a lot, but I hope you find comfort in knowing you're not completely alone. No one can truly understand unless they've been there, so feel free to vent and chat anytime!

Take care,
Julie

Hello Misty and welcome. I agree with Julie that many of your symptoms have been described by others here on the forum.
A friend of mine has Ehlers-Danos Syndrome as well as IIH. She too has many of the symptoms you described.
It is so difficult to get across to others what we are going through. Understand that part completely! Have a look at the guides that are available on the site and see if any of these may help.
Let us know if there is anything we can help you with.

hi Misty;
I have had Graves disease, and also have had an elevated ANA in the past. my mother has antiphospholipid syndrome and her sister had lupus, but my antibodies seemed to regress recently. I have IIH and respond best to prednisone, suggesting an inflammatory/autoimmune component possibly. I was diagnosed with Graves ophthalmopathy, interestingly a few months after the point that I can trace my IIH symptoms back to. I suspect that the pressure pushed my eyes out rather than causing papilledema, which I have not had. I am not really struggling with the autoimmune stuff right now, just the IIH and some other things. it sounds like you really have been through it. my house is a disaster also. my kids mess things up 10 minutes after I clean them so I just don't bother anymore. I can't yell at them because it makes me sick. we all go through the same problems with no one understanding what we experience; it's a very common thread here. I hope you find some comfort talking with us about it all.
Deb

I appreciate the responses . My autoimmune stuff has been out of control recently with elevated ANA and CRP levels. Due to the lesions, I can't take many of the medications out there like Enbrel or Humira because they can possibly activate the lesions causing MS (which Enbrel is what my rheumy thinks triggered my aseptic meningitis in the first place). My joints did better with steroids, but my IIH worsened and I made the decision to deal with joints than headaches. I have Hashimoto's thyroiditis (autoimmune) but is fairly controlled right now.

I just spent another 2 days in the hospital with bad headaches, but this time my treatment plan has taken a new route. I have bulging discs and tears in my neck of which I was told to ice/Advil. My neurologist said NO MORE TAPS even for pain relief because I have to get a shunt and you can't have an LP close to the procedure. I explained that I have only been at my new job for 2 months, and can't get any unpaid sick leave for the procedure for at least 4 more months and paid leave for 10 months (got to love the government) so the surgery is just not an option right now. I need my job and my insurance to cover the procedure!! He discharged me with no tap and no relief with appointmentments for more visual fields and a neurosurgeon visit. I am at work now, doing my best to fight the pain, waves of nausea, dizziness, and neck stiffness. I hope by the end of this week to have answers from the neurosurgeon and perhaps an understanding that I NEED to work. And maybe he will tap me, just for now, just to help with comfort until at least March!!

I totally understand your reasons for needing to work, and I do hope your neurosurgeon understands the situation you're in, and will find a way to work around this by finding a solution. There is a chance though that if he finds your visual fields are compromised, that he wont be able to put off surgery, especially if the risk to your vision is high, and you must prepare yourself for that.

Please keep us updated, and I'll have my fingers crossed for you.

I agree, there may not be an option if your vision is in jeopardy. The good news is even if they put you on the express track it will take a couple months to get you scheduled..with the holidays maybe even longer. I had an initial appointment with a neurosurgeon last October and didn't have surgery until the end of April. I had the tests all done that day and they wanted me to have first available..it's really a 'hurry up and wait' process, so hopefully you'll be ok. It's been my experience that most surgeons will work with you and provide documentation for your employer. Once you have confirmed the treatment process, I'd check with your human resources or employee assistance program representative..they should have something in place for unforseen medical issues and willing to work with you if they think it's short term. I will also keep my fingers crossed for you.. good luck!!!

Hugs! That is a lot going on. I wish you the best!!!

Misty, are you able to take Diamox? Having a diuretic, either Diamox or Furosemide may be helpful in keeping your pressure down.