How I came to know about my brain's intruder.

In January of this year I awoke one morning with what felt like a lot of pressure in my head. I called it a headache, but really it didn't hurt so much as it felt like my head was going to explode from the inside out. I was also nauseated. I just wanted to put my head back down and close my eyes. And that's what I did. I slept most of the day and when I got up later that afternoon, I felt better. Pressure seemed to have gone down some. Nausea was better. The next day I felt pretty much normal. Then, about a month later it happened again. I awoke in the morning with pressure in my head. Only this time the pressure felt much greater than it had a month before and the nausea became so severe it resulted in forceful, projectile vomiting. It was quite concerning. I was really sick that day, but it felt like nothing else I had ever experienced so I made an appointment to see my primary care physician. 

From that day forward to this day, the pressure in my head has been almost constant, it sometimes results in sharp pain across the right side of my head, it is often accompanied by nausea, and occasionally comes with forceful projectile vomiting.

But that's not all. Turning back the calendar, I realize these are not the only symptoms I have been having. For the past 1-2 years I have been experiencing intermittent blurry vision. Sometimes both eyes. Sometimes one eye or the other. Sometimes I wake up with extremely blurry vision in the morning and other times it just comes on suddenly during the day. When it happens, it is difficult to clear. It makes driving irritating because even with my driving glasses, everything is blurry. And then eventually that episode clears and then another one comes along whenever it does. Nothing has shown up on eye exams. I thought it had to do with my vision changing and needing a new prescription. In October of last year I had an eye exam and a doctor (she was a new doctor in the practice and had never seen me before) said "I have the answer as to why your eyes are blurry...your eyes have gotten better and now your glasses are too strong!" I was excited I finally had an answer, or so I thought. I got new glasses, but the intermittent blurry vision has continued to this day. I didn't know why, until now.

But that's not all. Also for the past 1-2 years I have been having more and more problems with memory and cognitive issues. I can't remember names. I've started losing (misplacing) stuff and I have never, ever had that problem. I can't find words. I can't remember numbers or do simple math in my head. I often can't complete a thought because it feels like it gets lost somewhere in my head...as if parts of my brain are blocked or not functioning. I have very little reading retention or comprehension. If I try to read instructions for putting something together or doing something, I give up because I can't follow through with the steps because I can't remember them. I read recipes over and over because I can't remember which items or how much of an item the recipe calls for. And I could go on and on with examples. Needless to say, it was truly concerning to me as the cognitive issues got worse and worse over time. I withdrew from nutrition school last summer because of our house flood and the need for me to devote time to the restoration and gain employment to help with the expenses. But when that was done I had to admit to myself that much of what I had learned had been erased from my memory and it had become so severe that I could not learn new information. And that is a frightening, frightening place to be and not know why. I began to imagine I was dealing with early dementia or a brain tumor because nothing else made sense. I was too scared to go to the doctor with these complaints and so I didn't. And let me tell you how isolated you become in your life when you have cognitive deficits. Even a social conversation becomes a challenge because sometimes I cannot stay focused on what someone else is saying and sometimes I can't remember previous conversations or details. So I began being a hermit and I knew it was happening, but I didn't know what else to do until the pressure headaches and nausea forced me to go to the doctor. So on the one hand, the pressure in the head and the nausea were of great concern, but they were also of some weird relief because they were symptoms I could address with a doctor while also saying, "and oh, by the way, I also have been having these memory and cognitive issues."

And so began the journey to a diagnosis and treatment. I first saw my primary care physician who thought it could be tension headaches or early signs of a shingles outbreak, but given my history of spinal stenosis, perhaps also related to that. So he gave me a muscle relaxant for the tension headaches (which you can imagine didn't help because they are not tension headaches) and referred me for MRIs of my brain and cervical spine. My insurance company denied the requests. He then referred me to a neurologist for an evaluation. She ordered a plethora of lab work (she said to rule out autoimmune conditions, inflammatory conditions, and nutrient deficiencies, all of which could elicit these symptoms). She also ordered a pulse oximetry study to see if I was oxygenating well at night (she said to rule out sleep apnea because low oxygen levels at night can result in waking up with headaches). She also ordered an MRI of the brain (she said to rule out brain tumor or other brain abnormalities that would explain my symptoms). I received a call from her office that the MRI had revealed a cyst on a gland in my brain and the radiologist recommended that I return for an MRI with contrast to further evaluate the mass. She also said the lab work had come back completely normal, but the pulse oximetry test was abnormal and I needed to schedule a full sleep study to assess me for sleep apnea. I returned for the 2nd MRI and scheduled a follow up in her office with her Physician's Assistant the next day rather than waiting another six weeks to be able to see the doctor herself. The PA informed me that the 2nd MRI had revealed a 17mm x 16mm x 11mm pineal gland cyst, but the radiologist thought it was benign and recommended I return for another MRI in a year to determine whether or not it was growing in size. A year? She went on to explain that the pineal gland cyst was an incidental finding and was not causing my symptoms. So I asked the obvious question..."then what do you think is causing my symptoms?" And she responded "We don't know. But we are going to treat you for migraines. We would like to start you on blood pressure medication." Why? I don't have high blood pressure. I'm not going to take blood pressure medication. And these are not migraine headaches. In fact, they don't even hurt like a headache at all. I just feel like there is enough pressure in my head that it will explode. I feel like my eyes are bulging out. And the constant nausea is making my life miserable. And what about the memory and cognitive complaints? Those aren't caused my migraine headaches. She responded "We consider you a 'work in progress' because we don't know. It could be that you have sleep apnea and it is causing all of your symptoms." No, I don't think it could be causing all of this. I will get the sleep study just to follow through, but I think if I have sleep apnea then THAT is an incidental finding. I refused the high blood pressure medication. She offered me some samples of high dose anti-inflammatory medication to "treat the migraines," but of course it does nothing to help the pressure in my head. She gave me some anti-nausea medication which is the only thing I take that helps keep me from projectile vomiting when the nausea comes on. I was told to come back in six weeks after my sleep study. Meanwhile, I am on my own. I consulted with a local acupuncturist and I am grateful that acupuncture has reduced the amount of pressure I feel and has significantly reduced the accompanying nausea. But it is short lived and temporary. I can't keep this up forever. Just happy to have some relief for now.

And so began my journey to becoming my own best medical advocate and putting my experience with medical research to work for me! I began to research, and research, and research pineal gland cysts. Now I am becoming an expert in these intruders and I am determined to get rid of the one that has taken up residence in my brain so I can return to health and life and feeling good again. In my search I have also discovered that I am not alone. There are many, many people who are told their pineal gland cysts are incidental findings and not responsible for their symptoms...symptoms that look a lot like my symptoms, or even worse. Seizures can occur for some people. Absolutely frightening. But I will explain more about my research findings in another post.

Meanwhile, I went back and requested a copy of an old MRI of my brain that was done in 2009 after I had a TIA following lumbar fusion and guess what I found? I had an 11mm pineal gland cyst on that MRI and no one ever told me. Why? Because there is a medical myth that these cysts are incidental findings and don't cause symptoms. But my cyst has gotten larger since 2009, a fact I find to be very important.

By the way, I have yet to see my own pineal gland cyst on the MRI. The PA in the neurologist's pulled up the images on the viewer but closed them and admitted "I don't know what I'm looking at. They don't teach PA's how to read MRIs!" So I don't know what my own pineal gland cyst looks like but here is a garden variety pineal gland cyst that belongs to someone else:

Garden variety pineal gland cyst (not my own)

Then I went to see my eye doctor (not the new doctor, but the one I have been seeing for years who I know to be a specialist with neurological eye disorders) and I explained about the pineal gland cyst, pressure headaches, nausea and blurry vision. After a number of tests and exams in his office, he found that the optic nerves in both of my eyes are swollen...an indication of pressure in the brain, a valid explanation for my intermittent blurry vision and, according to him, an explanation for the pressure headaches and nausea. Not to mention, he is familiar with pineal gland cysts and knows that they CAN be symptomatic. I began to cry. Finally, someone was validating what I knew to be true. The pineal gland cyst is the cause of my symptoms. Not some incidental finding, but the cause of my symptoms and my eye doctor had found physical evidence to support this. I returned to my primary care physician and I explained everything as I have above. And he said, "you need to see a neurosurgeon." Yes, indeed I do and I need for you to be my advocate. He said he would. Finally I feel I am getting somewhere! But I feel my fight has only just begun. My research has shown that most doctors, even neurosurgeons, either 1) don't believe pineal gland cysts cause symptoms or 2) offer no treatment for them. The only treatment is removal of the cysts, but most surgeons won't do it. I would imagine insurance companies like to side on the side of these doctors. We'll see. My primary care has requested approval from my insurance company to refer me to a neurosurgeon at the University of Colorado Hospital (my request). I said, "what if they deny it? What do we do then?" He responded, "Then we appeal." And so...here we go. This warrior is already weary and I'm not even to the battle field yet! However, I am very determined so I do have that going for me! Stay tuned!