I don't know how this was moved into my "unpublished" file, but it was, and I don't wish it to stay there. Republishing now, to correct this. Original post and subsequent rec list update below:
Update: wow, I can't believe this made the rec list; thank you!
In 2014 I began having full grand mal seizures, seemingly out of the blue. I had 5 or 6 of them that year, but none of my family saw it happen. Because each seizure caused unconsciousness, disorientation, and amnesia, I didn't know and couldn't explain what was happening to me.
In the post-ictal (after seizure) state, I quite determinedly left the house to climb up our very steep street, barefoot, confused, and wearing only a t-shirt and underpants. Fortunately, my husband and/or son(s) were home each time to accompany me on this strange, stubbornly-undertaken journey, and to gently turn me back toward home. After I came back to myself, they were stunned to learn I had no memory of these events (or indeed of the past several days), and I was of course stunned to hear about them. The family diagnosed me with "wacked-out poo brains" and took me to my doctor.
Presuming it was medication-related, some of my prescriptions were changed in an attempt to bring the situation under control, but it only became more frightening. My memory suffered more with each episode, and I began showing signs of advanced dementia.
This was such a terrifying time! I was sleeping excessively but was bone-tired, even after three straight days and nights of sleep. Periods of near-constant sleep alternated with bouts of insomnia. Seizures followed each period of prolonged sleep.
I asked the same questions over and over again, forgetting I had already asked and been given an answer, unable to make new memories of recent events or conversations.
Conversation was difficult, as I had trouble remembering, organizing my thoughts, and with comprehending and internalizing what was being said to me.
Losing track of time, I didn't know which day of the week it was, much less the numerical date, month, or year. I lived in a fog, without clear connections to much of my history or to my future, unable to either think ahead or remember the recent past. I felt lost and adrift in the present.
It wasn't until January 2015 that anyone witnessed my having a seizure. I have no memory of this, but I had the first one alone that day, then staggered through the house looking for help. Unable to find the words to explain, I gestured toward my body, agitated and struggling to tell my sons "the power went out." As my sons realized I was having another *episode,* my muscles violently contracted and I fell to the floor, with the subsequent second seizure finally revealing the answer to the past year's medical mystery.
Although it was a great relief to finally know what was happening, we were no closer to understanding why.
My wonderful, beautiful, loving and ever-devoted husband was frustrated by the lack of answers, and turned his attention to researching both my symptoms and my medications more thoroughly.
In the meantime, the seizures occurred more frequently. My husband, sons, and friends made sure I was home alone as little as possible. I can't begin to explain how distressing it is to just be living your life one minute, and the next one you're waking up in the hospital with pain everywhere and large gaps in your memory. Or to have your children describe caring for you in the midst of your emergency; keeping you turned onto your side, preventing your limbs from flailing into hard objects, wiping the thick saliva from your face and turning your head to prevent you from choking... Absent their calm, competent assistance, I might not be here to write this diary.
My brilliant husband found the answer a hospital full of doctors had missed; I had serotonin toxicity, aka serotonin syndrome. He didn't, at first, know why I had it, but he did identify it correctly.
It took time for my husband to name a culprit. We went through my medications and removed or replaced with a substitute any serotonergic (increase serotonin levels) drugs, but the seizures continued. Eventually my hubs succeeded, and ahead of any of the doctors involved- The problem was the estrogen patch prescribed to me five years prior, after an oophorectomy. Estrogen can increase the body's serotonin level, and too much serotonin causes seizures, then coma and death.
When told of my husband's discovery, I removed the patch immediately. As my body's estrogen level fell, so did its serotonin level, and the seizures gradually stopped. My last grand mal seizure was in Jan 2016; it was followed by a few petit mals, the last of which was April 2016. I'm nearly one year seizure free! :)
After the last, and, I hope, final seizure, my memory problems persisted. I feared it was an irreversible dementia, but, slowly, over the past fourteen months I've regained the ability to create memories, and many of my lost memories have returned.
I wiped off the faucet of my bathroom sink, for example, and it triggered a flood of returning memories of working as a night-janitor in an Ohio bank. What a bizarre feeling it is, to suddenly regain a large chunk of missing time...even so, I welcome and cherish each newly-returned experience. Not all of the lost time has returned, but I am hopeful the process will continue.
So...how did estrogen so thoroughly disrupt my life, and could it happen to you?
To answer the second question first; yes, it can happen to anyone, but it isn't especially likely.
A genetic collagen disorder, Ehler's Danlos Syndrome, affects every cell in my body. My joints are hyper-flexible and easily fall from their sockets, and my skin is stretchy, ultra soft, and buttery smooth. I'm mobile enough to walk about my house in short bursts, but have an electric wheelchair for anything more strenuous. My immune system is puny and weak so I fall ill easily and often, and if a medication has unpleasant side effects I will experience them. In short, my health was already a mess before this began.
The estrogen patch was prescribed immediately after a surgery to remove my ovaries and a few small tumors adhered to my bladder, intestine, and abdominal wall. I wasn't given any progesterone to moderate the negative effects of estrogen, however; setting me up for hormonal imbalance. Estrogen, and thus serotonin, were free to accumulate in my system for 5 years before my husband discovered this oversight.
I was alright for the first year or so, but by early 2012 was feeling the first effects of increased serotonin- more painful joints, growing unsteadiness on my feet, less patience, and less energy. Initially, I suffered from insomnia, which later turned to somnolence.
As time passed, I was less able to find the words I needed in everyday conversation, experienced alarming lapses of memory, and crushing fatigue. 2015 is practically a lost year, a ghost, bcz of the time spent sleeping and the post-seizure amnesia.
Check your medications carefully, bcz, while relatively rare, serotonin toxicity does happen and it can be difficult for medical professionals to identify. At one of my hospital visits, I was prescribed an anti-seizure drug that increases serotonin, and, at another, was injected with the serotonergic Tramadol which provoked an immediate seizure in the ER waiting area. Without my husband to speak up for me, the hospital staff might have killed me.
Although my memory began to improve just in time to record the nightmare that was 2016, I'm grateful for every instant.
Thank you reading; wishing you all a happy, healthy 2017!
~tfc
