In July of 2015, my gynecologist, Dr. Eid, suggested that we try Depo Provera (the birth control that requires you to get a shot every 3 months, but in return you do not get a period) as a last-ditch effort to help get my Polycystic Ovarian Syndrome under control. At this point my periods were 2-3 weeks long and coming only 2-3 weeks apart and we had tried just about every birth control pill on the market and I was desperate for some relief. She warned me that I may spot periodically for the first 6 months but after that, I wouldn’t get a period at all. I got my first shot at the end of July 2015. I did not spot or bleed at all for the first 3 months, but in late August I became very ill.
On August 28th, 2015 I went to bed completely sober and healthy. On August 29th, 2015 I woke up with a hangover from hell. God awful headache, nausea, exhaustion, feverish, and just overall very unwell. I spent the entire weekend in bed trying to rest in hopes that it was just a flu bug…
After two visits two unsuccessful visits to Urgent Care, I landed a visit with my primary care physician, Dr. Patel. He sent me for an MRI and referred me to a neurologist, Dr. Du.
Unfortunately, this Dr. Du felt that women, young women especially, are hypochondriacs, so if I didn’t bring my dad with me to my appointments, he would completely dismiss my concerns and we would make no progress… but if my dad came to the appointment and sat in the corner of the room and played on his cellphone pretending to pay no attention, tests were scheduled and he took me a little more seriously.
In November of 2015, Dr. Du sent us to meet with a neurosurgeon, Dr. Edwards, because the spinal tap showed I had increased intracranial pressure and the MRV showed I had a significantly narrowed left transverse sinus… This neurosurgeon said that he would not put a stent or a shunt in unless I was disabled (unable to work) due to the severity of the pain, being blind, and needing a spinal tap once a week. We walked out of this appointment feeling more defeated than ever… This team’s approach wasn’t about preserving disabled (unable to work) due to the severity of the pain, being blind, and needing a spinal tap once a week. We walked out of this appointment feeling more defeated than ever… This team’s approach wasn’t about preserving quality of life… it was about waiting for it to deteriorate and then intervening. It was at this point that we decided that this was not the right team of doctors for us and it was time to move on…
So, on January 15thof 2016, I met with a new neurologist, Dr. Alonso, in Indianapolis, Indiana. Dr. Alonso took the time to review all of my medical testing prior to meeting me and did a very thorough 15-minute-long exam upon my arrival that determined that I had developed papilledema (swelling of the optic nerves). He then diagnosed me with Pseudotumor Cerebri also known as Idiopathic Intracranial Hypertension (IIH). He then immediately followed that up by asking me if I was on any birth control and this is the conversation that followed:
Dr A: Are you on any form of birth control?
Trinket: I am actually on Depo Provera and I actually just got the last shot 4 days ago…
Dr A: *sigh* well, don’t get another dose. It will take about 6 months for it to completely exit your system.
Trinket: Can I ask why I need to stop taking it?
Dr A: It’s the leading cause of Pseudotumor Cerebri
Trinket: NO WAY! YOU HAVE GOT TO BE SHITTING ME! I asked my gynecologist point blank at least a half a dozen times if it could be causing my symptoms and she PROMISED me it was not.
Dr A: (pulls out personal phone and googles *Depo Provera Lawsuits* and hands me his phone)
Trinket: (Gob smacked by the thousands of results showing up on the screen)
He then tells me then asks me who my gynecologist is and tells me he is going to send her a letter informing her on how negligent she has been and a packet of information so that she can educate herself…
At this point… I was pretty well in shock. I had been living my life in excruciating pain for well over 6 months and now, for the first time ever, I had a diagnosis.
Dr. Alonso was convinced that if I got off of the birth control and lost weight, he could cure me. We tried basically every diuretic on the market… we tried them in combination with each other. When the diuretics failed to work we tried infusing diuretic sugars (xylitol and mannitol) every other week for several weeks. We started with mannitol and we infused that every other week for 8 weeks and when it didn’t work, we tried xylitol and after 3 infusions with xylitol I was admitted to the hospital with incredibly high intracranial pressure and had to have a spinal tap twice within 4 days of each other so we decided to stop because it became apparent that none of these things worked to lower my pressure.
Despite the diuretics and sugars not working as expected to lower my pressure, they did give me awful side effects… I was throwing up at least once a day, so losing weight was not a challenge. I lost a total of 65 pounds without ever trying. Despite losing a significant amount of weight as requested, I wasn’t recovering or getting better… the more weight I lost, the more ill I became.
And unfortunately, Dr. Alonso took that as a shot to his ego. He promised me that if I lost weight and stopped taking the birth control… I would be cured and when that didn’t happen… he asked if I had ever been tested for clinical depression because he was concerned that this may all be in my head…
It took everything my dad had to remain calm and respectful… but my dad told him exactly what I was thinking but couldn’t through the distraught tears “She wasn’t depressed until she got sick and started experiencing excruciating pain on a daily basis with no end in sight and no one to help. And then we got up and walked out.
In August of 2016, exactly a year after I became ill, we traveled 3 hours one way to visit with Dr. Szewka at RUSH Medical in Chicago, IL. This was the first time that I had ever been to a teaching hospital so it was definitely an interesting experience for me.
After the nurse checked me in Dr. Szewka came in and briefly introduced herself and got my medical history and did a thorough exam. She then sent me for several very extensive eye exams and an MRI. After each test they gave me a copy of the results for my own records which I appreciated and they also gave me a copy of the results for Dr. Szewka.
After all the testing was we met with Dr. Szewka again to go over the results of the testing and develop a treatment plan. Unfortunately, at this point Dr. Szewka told me that I am in fact very sick. I do in fact have increased intracranial pressure, but I also have “every type of migraine” and she wasn’t sure how to best help me but that she was willing to give it the “old college try”.
At this point I had been sick for exactly a year and spent more than $200,000 in out of pocket expenses and insurance claims and I was not willing to spend more and drive 6 hours round trip for an “old college try”. So we thanked her for her time and proceeded to search for another alternative.
In February of 2017 we drove 5 hours one way to Cleveland, OH to meet with Dr. Mays and her resident Dr. Ali at Cleveland Clinic. Dr. Mays specializes in Neurology and Women’s Health. I was hopeful that maybe she would look at the big picture, not just the portion that fit under the neurology specialty.
By this point I am really struggling in a lot of ways (not just with head pain…) so we decided that we would drive up the night before and stay with my uncle and then go to my appointment and then drive home later that day. This would save us from driving 10 hours round trip in one day and in the event that we ran in to any bad weather, we didn’t have to worry about whether or not we were going to make it to our appointment on time or not because we were weren’t far from the hospital.
Cleveland Clinic is a teaching hospital and they operate much differently than most other hospitals. Upon arrival we met with Dr. Ali. He sat with us for well over an hour and a half getting a very detailed medical history and an understanding for the issue at hand. Then he performed a thorough exam. During his exam he mentioned that he felt that perhaps getting my mismanaged autoimmune diseases under control would help get my migraines under control as well. Then he headed out to debrief Dr. Mays.
When Dr. Ali came back in the room he had Dr. Mays with him. She asked me a couple of brief questions and then told me that she felt that I have condition called “Daily Chronic Headache” and she would like to put me on an antidepressant and Botox injections to treat it. I was immediately disappointed. We had driven all this way for this?
I told her that I didn’t mean any disrespect but that I would like antidepressants and Botox to be a last-ditch effort as I have had suicidal thoughts on antidepressants and I would like to try to limit the amount of chemicals I am pumping into my body to as few as possible. I also told her that Dr. Ali had mentioned getting my autoimmune diseases under control and perhaps that would help get my headaches under control and that I would like to pursue that avenue first. Her attitude and demeanor towards me immediately changed. She lost interest, she no longer wanted to be there.
In just a few short weeks (September of 2018) I am scheduled to meet with a new neurologist, Dr. Horton, in Indianapolis. I am both excited and nervous.