My journey with IIH started approximately 2 years before my diagnosis. It started with an left earache in my left ear that sent shooting pains down into my jaw. I thought I had an ear infection but my doctor couldn't find a reason for my pain. I was prescribed nasal spray to reduce suspected swelling in my eustachian tube (small tube that connects ear to throat). When that didn't work I was sent to an ENT to have a scope done. That turned up nothing. Finally my doctor said he just didn't know the problem so I taught myself to live with the pain.
In the fall of 2013 I started having frequent headaches. I chalked it up to stress and tried to cut back on obligations but the headaches persisted. Things stayed basically the same for about a year before they started to get worse.
In August of 2014 I went to my doctor to talk about the headaches, fatigue and joint pain I'd been experiencing. He checked me and ran some blood tests. When everything came back okay he suggested that my problems were caused by my weight.
I started to work harder to lose weight but my health continued to decline. That fall I began to have problems with hives and facial swelling. Again the doctor had no answers for me. I was referred to an allergist who happily proclaimed that I am not allergic to anything. Still, I started on a regime of 2 Zyrtec capsules a day to keep the hives and facial swelling at bay.
I don't know how many times I saw the doctor in November and December. No one could figure out what was causing my problems. My last visit consisted of the physician's assistant blaming my troubles on anxiety and depression. I felt like she was calling me crazy but I knew something was wrong with me physically.
About a week later I woke up blind. My vision came back about 30 seconds after I woke up but it continued to go in and out throughout the day. I lost my vision every time I stood from sitting. Although I was reluctant to see my doctor again, I called to ask for guidance and was referred to an opthamologist.
That one visit to the eye doctor changed everything for me. During the exam he noted that my optic nerves were extremely swollen. He explained that swollen optic nerves could be caused by a few different things. Because swollen optic nerves can be caused by things that are considered medical emergencies, I was ordered to the hospital for an immediate MRI.
The MRI came back clear and the eye doctor told me that I most likely had something that's known by the unwieldy name of Idiopathic Intracranial Hypertension. For a better diagnosis I was referred to a Neuro Opthamologist. He did a Lumbar Puncture (spinal tap) to measure my spinal fluid. There I was officially diagnosed with IIH.
My N.O. prescribed a Diamox which is a diuretic that can help reduce the production of spinal fluid. He also recommended weight loss and told me that losing 10% of my weight could help relieve symptoms. And thus, my journey as an official IIH patient began.
That got much longer than I anticipated! To read the really long version start here, My Story: The Beginning
To read about my continuing journey with this condition, please follow my blog!
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