Hi,
My name is Ashlee Davis. I am writing to you in hope that you can help me or tell me where to go for help. I began having migraines around 12 years of age and am now 26. So I have experienced quit a few over the years from time to time. However, in June of last year, I woke up with a headache unlike any other that has pretty much continued constantly, having some days better, some days worse. When this began, I lost sight in my right eye for 3 days that gradually came back. Most of the pain is located in the back top of my head, but I also have a spot at the base of my head on the right side that is excruciating at times. Most of the time it feels like I have a permanent hang over, like my brain is a balloon and someone is trying to pop it by squeezing it between their hands. Physical activity, bending over, sitting up from a lying position, attempting to use the bathroom, etc. have all become painful to accomplish. My ability to think, concentrate, or carry on long conversations, has suffered. I have become irritable and easily agitated, my friends and family say “mean”, because I am constantly in pain. Some days the pain is tolerable, but there are many that have me crying almost screaming in pain. At times I have become disoriented, had blurred vision, and lost feeling in the right side of my face and arm. I have also had to have new contacts and glasses because my vision has gotten worse since I got them in September.
I have had MRIs, cat scans, ultrasounds of my heart, 2 spinal taps, and many other tests done. Out of those test the doctors have only found that I have a small stenosis of my left carotid artery, spinal fluid pressure on the high side of normal, and a 1.4cm pineal cyst. The spinal taps, as painful as they were, actually seemed to help my head, relieving the pain a little for several days after them both. However, the doctors around here are saying that it’s “just” chronic migraine.
I have had migraines for half my life. With them sound and light bother me. And when I take Maxalt or Excedrin, they usually go away, lasting 2 or 3 days at the most. However, these or this headache that I have been having since June has been different and has not completely gone away yet. I have had a headache every day since June. I have been in and out of the doctors offices and the ER several times, trying all kinds of medicine and shots for pain that just haven’t worked. None of the migraine meds or preventatives has helped. And the pain meds only put me to sleep with the pain still there when I wake up. I even had 40 something shots of Botox in my head twice as an experimental treatment, that didn’t work. I have also had nerve blocks and trigger point injections at the base of my head every 6 weeks. Nothing has worked.
I live in the southeast corner of Alabama, close to Dothan. We only have a few good neurologists in the area. They have all said they have found nothing, but migraine. I have done research on migraine and on pineal cyst. I really do not think that my problem is migraine. However, many people online that have been diagnosed with a pineal cyst have all had the same symptoms as me. I am desperate for help. I just want my life back! Does you know any doctor that knows something about these pineal cysts? Or could my headaches be something else? Can someone please help me?!
Ashlee Davis