So due to a mix-up, as of December 16th I've been off of Paxil for three days. My bad flashbacks have decreased, my brain fog has cleared, and I'm feeling good. I did notice a bit of a heart flutter later in the day.
December 17th brings a lot more heart flutters. And a couple of dizzy spells. Now I normally have dizzy spells, especially over the last year when I started taking various medicines for my diabetes and its related side effects. (Lipitor for cholesterol and Lisinopril for my blood pressure, since I now eat a lot more meats, I guess.) I have to be careful bending over and standing up too quickly, that kind of thing. But this was different. This was a great big "WOAH, what muscle-man just gave the merry-go-round a spin?!?" dizzy spell.
December 18th the heart flutter only happened once but the dizzy spells increased.
On December 19th the dizzyness didn't go away. At all. For ten days.
It was just a constant state of vertigo, where every moment felt like I was standing on the deck of a wobbly ship, and just moving my eyes from one spot to another was enough to make the world spin. I couldn't function. I couldn't focus, I couldn't clean, I couldn't drive. I would spend a few hours trying to get the smallest things done, or giving up and just trying to watch TV or veg out on the internet, and then after a few hours I couldn't take it anymore and would have to take a nap. The nap would usually help me reset and be able to cope again for a short while, but within a few hours I couldn't take it anymore and was back to bed. And since I was napping all day there was no getting a full six hours sleep at any one time; for the first solid week it was just a constant cycle of up for few hours then sleeping for a few hours around the clock.
December 26 was the first day I made it through without having to go lie down again. Things were still a roller coaster for the next few days, but on December 30th I had my first identifiable moment without any dizziness. And there's been less and less of it over the last few says since then.
Joy says she's seen a huge improvement in my mood during this time, though. She says I've started singing around the house again. I've started working on projects (assembling a plan on how I'd like to celebrate Star Trek's 50th Anniversary, for example) and devoting some real mental energy to them again. I've started writing again, first in posts and wow, look at this, I'm even on the third part of a blog! It's been work to stretch the old grey matter again, but the very fact that I can is a huge step forward.
Emotionally I've been very verklempt. I can't tell you how many times over Christmas I quickly became choked up and was trying not to burst out in tears of happiness. Or how many times I couldn't keep it in and started crying over my frustration at the constant dizzyness. And those flashbacks, some bad but now also some good, all making me choke up with each emotional extreme. (But at least they've been at a much more normal rate of three to four a day as opposed to five or six an hour.)
December 28th brought me into a new wave of emotional side-effects. I've been angry again. The slightest thing has been setting me off. I'm getting moodier and moodier. I've been losing interest in everything; I don't care about those projects I started last week anymore, I've abandoned the TV shows I was watching halfway through an episode, I've even abandoned my Doctor Who audio dramas halfway through the last episode I was listening to, and I haven't seen any point in coming back to either of them. I've been pushing myself to try and get people what they need for the household chores, but mostly I've just been apologizing to everyone because it's not done and it's not going to be done by the time you need it, sorry. I used to have an attitude of "Well, this will at least make me feel better for the moment," but that's been nowhere to be found lately. And when I know that nothing is going to me feel any better or any less angry or miserable (let alone happy), then what's the point in it? When nothing is worth it then everything becomes meaningless.
So yeah, that's sucked.
Last night was our annual New Year's Eve party, which also doubles as celebrating Christmas among my group of friends. Normally it's held at our house, but this year Rich has gotten engaged to Lisa, a truly awesome lady who offered to hold it at her house. And thank the gods she did, because there was absolutely no way I was getting my house party ready this time. And I've been so volatile and fragile that I was truly afraid I would go in there and blow up over something stupid and petty like chopped peanuts vs whole peanuts or something and alienate everyone, or I'd start bawling uncontrollably and ruin the night for everyone. But none of that happened. What did happen is I got to spend some time with some great people who gave me the gift of some much needed laughter, remind me that I'm part of a group that has bonded over the last two decades, and I've come out of it feeling stronger.
Joy has been by my side this whole time, reminding me that what I'm feeling is just my body's way of throwing a temper tantrum and wanting the Paxil back, and reassuring me over and over again that this will end, even when I don't believe it. Today I feel rested, recharged, optimistic, and ready to get back to living again.
And still a little verklempt. But that's not so bad. ;)
Friday, January 1, 2016
My Paxil Withdrawal, Part 2: Messing with the Meds
So my psychiatrist felt that the best thing to help get my bad flashbacks under control (and thus hopefully also resolve my ever increasing memory and comprehension issues) was to add on Abilify to work with the Paxil I was already taking. She prescribed it on Wednesday, December 2nd. She wanted to see me again in two weeks to see how it was doing.
I went to my pharmacy to pick it up a few hours later, and was told it needed to receive an extra approval from the insurance company.
On Thursday December 3rd the pharmacy told me it was still awaiting the extra approval, and suggested that I check with my doctor to make sure she had submitted it to the insurance company. So I did, and the doctor's office told me their records showed it had been submitted at 4:20 the previous day. (Which I remember because... well, it's getting my drugs at 4:20, so it gave me a childish giggle.)
Finally on Monday December 7th I got both a call from the pharmacy and a letter from the insurance company telling me I was now allowed to have the Abilify. I'd lost the better part of the first week; I hoped the remaining week would be enough for my doctor to see some results. I needn't have worried.
By the night of December 7th I'd had my first violent outburst, screaming and throwing things at my dog for peeing on the bed. Suffice to say this is not how I normally react to this kind of (admittedly extremely annoying) inconvenience.
On December 8th I set out some chicken to thaw for my dinner while I cleaned. My other dog had managed to pull it off of the counter and I caught her eating it. It was like someone had flipped a switch. I saw red and the next thing I knew I was beating the dog screaming "BAD DOG!" in her face. In the back of my mind I knew this was wrong, but the rest of my brain slammed the door on that part and was completely unremorseful. The damn dog deserved it.
On December 9th I was feeling better. I was still angry in general, but it was in the background and I was starting to feel better and get things done. Okay, I thought, maybe the initial shock to my system was rough but it's balancing out and this is going to be okay.
On December 10th I went to take my morning meds and discovered I had missed my meds completely the day before. December 9th was probably not better because I was adjusting, it was more likely better because I hadn't taken it. Figuring I had to give this a fair chance, I took December 10th's dosage.
By the end of the day I was completely furious at life. I was miserable, my fucking family was always miserable, this world is total shithole and...
On December 11th I woke up, looked at my meds, and felt an overwhelming rage at them, and actually shouted at them "FUCK YOU, ABILIFY! I hate you, I hate the way you make me feel, and I don't give a goddam rat's ass about giving you a fair chance! You just stay the hell away from me!"
...And spent the rest of the day pretty much feeling the same way I did on the 9th. Still a little angry at the world, but better in general.
I should also probably mention that sometime around this time I also started taking Vitamin D, per the recommendations of... well, I honestly can't remember which doctor recommended it, it may have been all of them and/or my counselor.
December 13th was amazing. My brain was sharp but not angry, I was feeling motivated and productive. I was feeling more clear headed than I had for as long as I could remember. I didn't know it at the time, but this was going to be my last day on Paxil.
Because on December 14th I discovered that in all the excitement over getting the Abilify in and approved, my doctor had overlooked refilling my Paxil. In her defense this was really not like her, in the eight years I'd been seeing her I never had a problem. No big deal, I thought, I'll call them and let them know and there will undoubtedly be a refill in by the end of the day.
There wasn't, but I wasn't worried, I've missed one day before with no problems. And I was feeling great! It was like all that mess with the Abilify gave my brain a jump-start, shook it up just enough that the brain fog had cleared.
December 15th and there's still no refill, which is unusual, but I'm still feeling great, and I'll be seeing her on the 16th anyway for that two week follow-up.
December 16th, and my doctor is absolutely appalled that she missed getting my Paxil refilled. There are no messages in the system about my having called on the 14th; they're going through some staffing changes in the reception area so I felt this was understandable. I tell her all about my last two weeks. I'm now far enough removed from the events of that week that the remorse for the way I treated the dogs and what I was finding myself planning is sinking in, especially now that I'm retelling it to someone else and I'm hearing how it sounds. "I know they say that as a society we're only seven days away from savagery, but that was really disturbing to experience that." She replies. "I should think so, you went from being a pacifist to turning violent in less than a week. Stay away from the Abilify."
She refills the Paxil immediately, but discusses with me that since this has snapped me out of my brain fog, this might be a good opportunity to try and get off of it again. We tried weaning me off of it a few years ago, but it didn't work out. She warns me that going cold turkey isn't easy, but since I've inadvertently already started and am doing all right so far maybe this is the time. She recommends I pick up the refill and keep it with me, just in case.
I'm feeling better than I have in years, so I decide to give it a shot. I can always go back if it gets too rough.
Next up: The side effects.
I went to my pharmacy to pick it up a few hours later, and was told it needed to receive an extra approval from the insurance company.
On Thursday December 3rd the pharmacy told me it was still awaiting the extra approval, and suggested that I check with my doctor to make sure she had submitted it to the insurance company. So I did, and the doctor's office told me their records showed it had been submitted at 4:20 the previous day. (Which I remember because... well, it's getting my drugs at 4:20, so it gave me a childish giggle.)
Finally on Monday December 7th I got both a call from the pharmacy and a letter from the insurance company telling me I was now allowed to have the Abilify. I'd lost the better part of the first week; I hoped the remaining week would be enough for my doctor to see some results. I needn't have worried.
By the night of December 7th I'd had my first violent outburst, screaming and throwing things at my dog for peeing on the bed. Suffice to say this is not how I normally react to this kind of (admittedly extremely annoying) inconvenience.
On December 8th I set out some chicken to thaw for my dinner while I cleaned. My other dog had managed to pull it off of the counter and I caught her eating it. It was like someone had flipped a switch. I saw red and the next thing I knew I was beating the dog screaming "BAD DOG!" in her face. In the back of my mind I knew this was wrong, but the rest of my brain slammed the door on that part and was completely unremorseful. The damn dog deserved it.
On December 9th I was feeling better. I was still angry in general, but it was in the background and I was starting to feel better and get things done. Okay, I thought, maybe the initial shock to my system was rough but it's balancing out and this is going to be okay.
On December 10th I went to take my morning meds and discovered I had missed my meds completely the day before. December 9th was probably not better because I was adjusting, it was more likely better because I hadn't taken it. Figuring I had to give this a fair chance, I took December 10th's dosage.
By the end of the day I was completely furious at life. I was miserable, my fucking family was always miserable, this world is total shithole and...
On December 11th I woke up, looked at my meds, and felt an overwhelming rage at them, and actually shouted at them "FUCK YOU, ABILIFY! I hate you, I hate the way you make me feel, and I don't give a goddam rat's ass about giving you a fair chance! You just stay the hell away from me!"
...And spent the rest of the day pretty much feeling the same way I did on the 9th. Still a little angry at the world, but better in general.
I should also probably mention that sometime around this time I also started taking Vitamin D, per the recommendations of... well, I honestly can't remember which doctor recommended it, it may have been all of them and/or my counselor.
December 13th was amazing. My brain was sharp but not angry, I was feeling motivated and productive. I was feeling more clear headed than I had for as long as I could remember. I didn't know it at the time, but this was going to be my last day on Paxil.
Because on December 14th I discovered that in all the excitement over getting the Abilify in and approved, my doctor had overlooked refilling my Paxil. In her defense this was really not like her, in the eight years I'd been seeing her I never had a problem. No big deal, I thought, I'll call them and let them know and there will undoubtedly be a refill in by the end of the day.
There wasn't, but I wasn't worried, I've missed one day before with no problems. And I was feeling great! It was like all that mess with the Abilify gave my brain a jump-start, shook it up just enough that the brain fog had cleared.
December 15th and there's still no refill, which is unusual, but I'm still feeling great, and I'll be seeing her on the 16th anyway for that two week follow-up.
December 16th, and my doctor is absolutely appalled that she missed getting my Paxil refilled. There are no messages in the system about my having called on the 14th; they're going through some staffing changes in the reception area so I felt this was understandable. I tell her all about my last two weeks. I'm now far enough removed from the events of that week that the remorse for the way I treated the dogs and what I was finding myself planning is sinking in, especially now that I'm retelling it to someone else and I'm hearing how it sounds. "I know they say that as a society we're only seven days away from savagery, but that was really disturbing to experience that." She replies. "I should think so, you went from being a pacifist to turning violent in less than a week. Stay away from the Abilify."
She refills the Paxil immediately, but discusses with me that since this has snapped me out of my brain fog, this might be a good opportunity to try and get off of it again. We tried weaning me off of it a few years ago, but it didn't work out. She warns me that going cold turkey isn't easy, but since I've inadvertently already started and am doing all right so far maybe this is the time. She recommends I pick up the refill and keep it with me, just in case.
I'm feeling better than I have in years, so I decide to give it a shot. I can always go back if it gets too rough.
Next up: The side effects.
My Paxil Withdrawl, Part 1: How Things Got Started
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.
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.
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