After being on Paxil for a solid 8 years, I've now been off of it for about three weeks. The withdrawal process has been difficult and in many ways my behavior has made that pretty obvious, leading to the occasional sheepish or tongue-in-cheek "Sorry everyone, I'm off my meds" post. I feel that's turning into Vaguebooking though, so I'm writing this to alleviate (or justify?) that. Originally I wanted to wait until the experience was completely over and behind me before I got into explaining it, but the process is taking so long and changing me so much that I need to do it now if I'm going to have any luck remembering the process. Plus I've found other people's writings of what it was like for them to go through this to be helpful, so perhaps this will help pay it forward.
To really properly explain this I should probably go back to the beginning. I'll try to keep it as short and to the point as I can. Those who want to get straight to the meds side of the story can skip ahead to the next post.
I had a terrible depression spell in 2006. I started therapy but was very reluctant to use medications, because the first one I was prescribed had me experiencing all kinds of bizarre night terrors full of pools of blood and/or personal dismemberment and generally a lot of screaming, so I was very insistent that I was going to get through this without meds. By late 2007 I decided that nothing any medication could do to me could be any worse than being forced to go on living. So I was put on Paxil this time and it was a good fit.
For a while, anyway. I was happy and productive, then over the years I was at least content and functional, then I was functional and coping, then I was struggling but persevering, then I was having days when I'd win the struggle and days when I wouldn't. Instead of my old status quo being a somewhat silly happiness punctuated by the occasional massive low, I was now on a smooth steady bar that was descending daily, so gradually that it usually escaped my notice.
There was also what I called my "fuzzy brain." My memory has never been great, but I found I was becoming more and more reliant on keeping notes for the most basic things. People would tell me about things I'd said and done and I'd just have to take their word for it. (Luckily the people in my life are all good people who I know have my back.) Just as my mood was deteriorating gradually, my brain fog was increasing gradually.
Over the last year it's reached a new peak. I found I wasn't speaking up because the process of trying to choose the words was too difficult. And I don't mean about expressing my opinions, I'm talking about the day-to-day things, such as "we need to order our daughter a second bottle of chocolate milk, because one doesn't last through her entire meal anymore." I wasn't reaching out to people because conversation was too difficult. I certainly wasn't writing anymore; I'd even given up on keeping a journal. I needed to conserve whatever brain power I had for making it through the day-to-day necessities of interacting with my family.
The third factor was the bad flashbacks. I know everyone has them but I have a hard time understanding how often is considered "normal" for this. I'm not sure anyone really knows what a normal amount of bad flashbacks is yet. But these were happening more and more often and getting more and more severe, being set off with the most remote of triggers. They were strong enough to bring me to a dead stop as I waged my little internal war to deal with the memories and the reactions they were making me feel in that moment, leaving me to then pull myself out of them and get back to the task at hand. My ability to keep this internalized was completely falling apart, with Joy asking me more and more often what was wrong, and I would have to just say "bad flashback" as I tried to shrug it off.
In November 2015 these factors had all hit new extremes. I had no idea what task I was trying to complete. I'd be having a bad flashback every five to ten minutes. Forming basic sentences was becoming a struggle. (My counselor told me "In all the years I've been seeing you, I don't think I've ever seen you search so hard to find the next word to say.") My grandmother has Alzheimer's, so every now and then when I start having extreme memory issues like this I go over this Ten Warning Signs of Alzheimer's list. This usually reassures me that what I'm experiencing is just regular aging and nothing to be concerned about, but this time I found that I completely matched six of the ten signs, with a partial match on a seventh.
I had my regularly scheduled med checks with my physician (for my diabetes) and with the counseling center's psychiatrist (for my Paxil) on the same day at the beginning of December, so armed with a printout of the Ten Warning Signs and with additional notes Joy had helped me prepare, I told them both about what was going on. My physician didn't think it was Early Onset Alzheimer's, but definitely felt something was wrong, and referred me to a neurologist. I'm still waiting to see how that pans out, the earliest they can see me is February.
My psychiatrist felt that the key to all my problems may have been the bad flashbacks; at a rate of one every five to ten minutes she felt this was disrupting my brain so much that it was causing all the other symptoms. This made sense to me. She didn't want to increase my Paxil again, but thought adding a new medication that would work with it might help.
And that takes care of the back story, and leads us to Part 2: Messing with the Meds.