Early Tuesday morning on April 28th, 2015 I woke up at 3:30am with an extremely painful migraine that I have come to associate as “thunderclap headache.” I had blurred vision, sweats, and a pounding in my head that was unlike anything I had ever experienced in my life. It was so bad my first thought was that I was having an embolism or heart attack. I woke up my roommate and pleaded with her to take me to the emergency room.
We arrived at Imperial Point Hospital in a panic and were not received with the same urgency as we had hoped. I was in so much pain that I was hysterical, my blood pressure was extremely high, and I kept demanding that someone please help me. I was disoriented and felt as if I was having a seizure. My friends were pretty shaken up and it was clear the nurses and doctors thought I was either on drugs or detoxing from drugs. Understandable, as my symptoms of vomiting (by this time I was very nauseous and had been sick into a bucket a few times) screaming, crying, etc. probably mimicked that of a drug user. The nurse was less than sympathetic and seemed more annoyed than anything about my condition.
After about 4.5 hours I was finally admitted to the hospital and given pain medication. (They gave me dilaudid, morphine, and toradol.) Surprisingly, toradol was the only thing that made the pain remotely subside. (I would later find out toradol is used as an anti-inflammatory.) I was seen by a neurologist and a Dr. but don’t remember much of the experience since I was sedated. I was given a lumbar puncture and a CT scan. I was discharged the next day and given the diagnosis of a severe migraine. I left the hospital with an aching head and extreme confusion. I had just experienced one of the most bizarre episodes of my life. I was given a prescription to two different types of muscle relaxers and told to “take it easy.”
I returned to work the next day May 30th (for half a day) and felt extremely confused/disoriented/weak and uneasy. I went directly home after work and slept until the next day, head pounding. My family, being extremely concerned, told me to come to their house so they could monitor the progress. So, I packed a bag and went to my parent’s house on Friday evening, May 1st. I went to bed early, complaining of head and neck pain. I would wake up later at approximately 1:30am with the same symptoms of thunderclap headache, crying hysterically and pleading for help.
My stepmom rushed me to the emergency room at Holy Cross Hospital in a panic. I had the same symptoms of vomiting, hysteria, high blood pressure, disorientation, and confusion. Once again, the staff was less than urgent and treated me once again as if I was a drug addict/user. I was put into a room and my stepmom was almost arrested for pleading with the staff to treat the situation with more urgency.
Once again, I can’t recall much except for the extreme pain and the seizure-like distortion of my body. I was constantly rolling around on the table looking for a comfortable position for my neck and head to rest.
I was finally admitted to the hospital and given a room, where the symptoms of vomiting and hysteria continued. A neurologist came to visit me, where they once again treated me with pain medication, while I screamed for the torodol that I knew would be the only relief. I was given a shot in the stomach (which the neurologist would later admit made the condition worse) and released the next day.
I went home, still disoriented, confused, nauseous, and hysterical. I wandered around my house crying, seeking relief and screaming in pain for help. My parents were dumbfounded as to how this could be just a migraine. On Sunday they were so overwhelmed with my condition they took me back to the ER for A THIRD TIME in the same week.
However, this time it was different. My father made a phone call to alert the doctors I would be returning. (We have a strong connection at the hospital and he was hoping they could expedite the ER process this time.) Thankfully, when I arrived at the ER they were more receptive and didn’t treat me as they had previously. I was seen immediately by three doctors and given pain medication to relax me. Once again, I hardly remember any of this- but I do remember my blood pressure (which is usually normal) hit 190/91. At that point it was clear this was not your average migraine.
One of the doctors recommended I have an angiogram. So, I was put onto a stainless steel table and told that they would take a camera through my groin and into my artery to look at the activity in my neck. When I heard the Dr. say, “We have a diagnosis…” it seemed like music to my ears. Finally, someone was agreeing that this was not just a migraine.
When we were briefed on the results of the angiogram it was revealed that my arteries were extremely narrowed and restricted. I was told this was common with cerebral vasculitis. I was admitted to the critical care unit and put on a slew of different medications, such as celebrex and nimodipine. They also started me on high doses of steroids to treat cerebral vasculitis. They were trying to fight both RCVS and cerebral vasculitis, at the same time.
I stayed in CCU for about 6 days. I had another lumbar puncture (which showed elevated protein) and an MRI. (At first observation of the MRI no one noticed the restriction of arteries, until they saw the angiogram and went back to look at it a 2nd time.) At such a small community hospital, the doctors were baffled and clearly out of their element. They didn’t have a “team” to deal with this and we soon found out the politics of medicine. No one wanted to step on anyone’s toes and no one really knew much about the condition. A rheumatologist explained that my blood test results didn’t show infectious diseases or any abnormalities (except an elevated white blood cell count) but it would be smart to see a specialist. (She recommended Cleveland Clinic in Ohio.) She was confident my symptoms were more similar to that of RCVS. I had one other episode of “thunderclap headache” while in CCU, immediately following a nauseous spell where I began to vomit, my knees buckled, and I went into a fit of seizure-like symptoms. I begged for the toradol, as I knew it would be the only thing to give me real relief.
I was transferred out of CCU on May 7th and moved to another room and considered stabilized. I was told I would be discharged the next day, May 8th if no other episodes occurred.
When May 8th came around I was very excited to finally leave the hospital and continue on with my life. (And more importantly, find a specialist.) But here I sit, May 9th, unable to leave because they are unable to find my medication anywhere in the country. (Apparently, when you have a rare condition, you also have rare medication.) Nimodipine can only be immediately found in Mexico and Canada, leading me to develop conspiracy theories about the monopolization of the pharmaceutical industry. (But I digress…)
After 3 trips to the ER in one week, being misdiagnosed and treated like a drug addict I always kept a positive attitude. I smiled at my nurses, told them jokes, and was pleasant and polite to everyone in the hospital. But my patience is wearing thin. My doctors seem to be clueless as to whether this is in fact cerebral vasculitis, a life-threatening condition, or RCVS, something that can be resolved in 1-3 months and never return. I understand being at a community hospital has been a huge disadvantage. I should be at Jackson Memorial or a center where the doctors are more familiar with these conditions. But as of now I’m not even allowed to be discharged until they can fill this prescription.
I wanted to share this story with you because I am very scared and confused as to what to do from here. Everyone agrees it’s best to seek the opinion of a specialist at Cleveland Clinic or a larger center… Which I plan on doing first thing when I am able to leave here. But any other advice or insight into cerebral vasculitis/RCVS would be greatly appreciated.
Some things I didn’t mention above:
I am 27 years old and have never had ANY health problems in my life. Except, March 27th, 2015 I developed a staph infection in my armpit (likely from shaving) and had the abscess removed. I am curious as to whether this could have played a role in developing vasculitis.
I am also an avid scuba diver, softball player, and previous gymnast. I have put a lot of stress on my body over the years.
Since 2008 I have traveled to approximately 30 countries as an English teacher. (Many of them 3rd world…)
I had another MRI 2 days ago that showed my vasospasms are still there but doctors have not been able to elaborate much about anything—adding to my frustration.
I would be happy to provide any other information regarding details, medications, examinations, etc.
Thank you.
Incontinence and cerebral/CNS vasculitis
What next - Cerebral Vasculitis
Can anyone help with cerebral vasculitis?
