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Struggling to get an IIH diagnosis.

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melissa_35548
melissa_35548

Don’t get me wrong, I don’t want IIH, but I do want to preserve my vision and relieve my symptoms. I have had constant and sometimes overwhelming head and neck pain since January 3. Additionally, I am dizzy, lightheaded, nauseous, and have ringing in my ears. I have episodes of blurred and double vision. My BP is high, averaging 145/95. My BMI is 35. I ballooned up the past 6 months after parathyroid surgery and a few rounds of prednisone for lupus. I’ve been to ER five times, and was admitted for 2-4 days each time. My CT scan, MRI, and MRV all came back normal. My lab work is normal except for extremely elevated D-Dimer level (1500). I was seen by a neurologist at one of the top 10 university hospitals in the country. My big mistake was telling him my symptoms were making me extremely anxious and that I was worried I would drop dead of a brain tumor. My neuro exam was normal except for blurred optic margins. He diagnosed me with atypical migraines and anxiety, prescribing propranolol and referring me to neuro-opthamology and psychiatry. In his notes, he heavily focused on my anxiety, making me sound crazy. Neuro-opthamology did a full exam and diagnosed me with PSEUDOPAPILLEDEMA, and told me to come back in 6 weeks so they could check me for any changes. That wasn’t helpful to me, as my symptoms have become debilitating. Since that appointment two weeks ago, I read up on IIH on my own, and started a very low sodium, low calorie diet, discontinued Flonase, began using my CPAP machine, and started regularly taking some Furosemide I had around for occasional water retention (and eating a banana everyday), thinking I would lower my intracranial pressure myself. I did feel a little better doing that, until I told my primary care what I was doing, and she immediately made me stop the Furosemide. I had a horrible rebound headache, and the worst blurred vision yet, and ended up back at the neurologist, asking why I couldn’t just have my ICP measured or start Diamox. He again brushed me off as an anxiety case, put me on Verapamil for migraines and referred me for vestibular testing for the tinnitus. Again in his notes, he stressed my anxietyand said he spent >30 minutes discussing my plan of care. As I said, I don’t want this disease, but what are the chances that I actually have all of the symptoms, several risk factors, but only have psedopapilledema and migraines (that I have no prior history of)?  Help! 

0 likes, 2 replies

2 Replies

  • sonya15205
    sonya15205 melissa_35548

    Posted

    Hello Melissa I too was diagnosed with iih. The only symptoms I had was just headaches really bad headaches. My last visit to ER after all the test they ran was a spinal tap and that's when they've noticed my fluid was high. So I started seeing a Neuro. They prescribed diamond, topamax, and another pill. After awhile they started to believe to that I didn't have iih because I didn't have all the symptoms so they decided to take me the diamond. A day later my headaches came back but ten x worse so I put myself back on them. I watch a webinar of a Dr who studies about that disease at John Hopkins and he says that you don't have to all of the signs. In your situation I would get a second opinion. My Neuro did send me to someone else but she also said I do have iih and I'm still battling with the pain while taking 7 medications and going for injections every week. I dont think this helped but you any but i hope it gave a little info on what next to do. And please dont just sit there if you have to go to seven Dr's until you get answers. Good Luck and stay strong

  • melissa_35548
    melissa_35548

    Posted

    Thank you, Sonya. You did help me. You gave me the encouragement to keep seeking answers and pursue a second opinion. I’ll get a third opinion if I have. The problem is, there are only a handful of neuro-opthamologists in my state. The first one seems to have written me off as an anxiety case, and hasn’t returned my call, even though he told me to call if things changed (my vision is becoming increasingly blurry). I’ve called two others, who can’t get me in for months. The neurologist says we must defer to the neuro-opthamologist, so I’ve hit a road block there, too. As I said, I don’t want this disease, and I certainly don’t want a lumbar puncture, but I also don’t want to lose my sight. Good luck to you, Sonya, and thank you again for your help!
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