I've been absent from this blog for quite some time due to illness and circumstances. Here is what has happened since April:
I had severe chronic migraines starting in April with an unknown cause. They still don't know. I haven't had an MRI yet, and I am on medication to suppress the migraines, which are still an issue. My current health care provider insists that neurology will not see me if my migraines are under control with my current medications, so the MRI is far in the future, despite recommendations from my previous neurologist. At least they are mostly under control. The medication also helps regulate my sleep cycle.
The first medication I was prescribed for migraines, Zonegran/Zonicimide which is related to Topimax, caused severe memory loss and disorientation. My neurologist originally did not think it was the Zonegran, but after a lumbar puncture to eliminate other diagnoses, it was determined that the medication was the cause. However, this took until August, and I feel sometimes as if my brain is still healing from the extended episodic amnesia.
During that time I also had an exacerbation of endometriosis. It had been getting progressively worse over two years with the inclusion of severe digestive issues. Due to severe bouts of constipation and diarrhea, with painful bowel movements, I began a gluten-free, dairy-free, egg-free, tea/coffee-free diet. I have an allergy to aspirin, salicylates, and sulfites. It's a common combination allergy that causes asthma and polyps in the sinuses. I've had a few asthma attacks over the years, but I have severe chronic sinusitis. The lack of nutritional guidance caused bowel inflammation that resulted in adhesions to my vaginal wall and abdominal wall over the sciatic nerve. I had symptoms that mimicked Multiple Sclerosis. The doctors insist the endometriosis is not involved in this process, but the results of my surgery is that my endometriosis had progressed in the same areas from where it was excised in 2006, and the bowel adhesions were in areas where endometriosis was previously excised.
In summary, endometriosis, bowel adhesions and migraines = a terrible summer spent mostly in bed, in pain, and most of which I don't remember well.
After the surgery, which reduced the bowel complications and removed the endometrial complications (uterine spasms, abnormal heavy periods, chronic pelvic pain), I was able to go to graduate school as planned. I'm in a PhD program for neuroscience.
I'm seeing a progressive nutritionist. I'm making lists of safe and unsafe foods. Shrimp was recently added to the list. I went to dinner with a friend Saturday night, and yesterday I had a migraine. We had shrimp in spring rolls. Shrimp was the only factor which was questionable (all other foods were safe), so it is the most likely cause of the migraine. Apparently migraines and skin sores (which I had over the summer) are signs of severe food allergies. My diet is still gluten, dairy and egg free. (Also, tea, coffee, wine and chocolate free - salicylates)
My doctors still think I might have an autoimmune disease, but there have not been any further tests or diagnoses since I am functional again. Hopefully it will be figured out eventually. Considering that endometriosis has an immunological component and patients commonly have comorbid autoimmune disorders, it is likely that I also have one. ...At least I lost 15-20 pounds since I can't eat junk food anymore (preservatives = bisulfites = unsafe)
Hope you all are faring well!
~Alison
