Well, I am back from the endocrinologist and ready to get back to the "interesting" story of my life of late.
By the way - my doctor's visit went well over all. I need to lose weight (what a shocker) and will be switching some meds around to try to deal with things in a different way but other than that, super, duper! It is so good to have a doctor who actually listens!
So . . . the story.
Where was I? Oh, right. From bad to worse.
Doc Feely switched me onto the anti-psychotic. I certainly didn't feel depressed and I never felt anxious while on the medication. That is primarily because I was so darn tired all the time that I was lucky to stay awake 6 hours out of every 24!
Normally, I am a morning person. I wake up ready to go and in a good mood. However, with this med, I woke up (sort of) feeling more like a zombie than a real person. I had problems keeping my eyes open long enough to make Hubby's lunch. In fact, some mornings I just couldn't drag myself out of bed to do even that!
This was quite a blow to me since I had been looking forward to walking and swimming (!!) each morning. Now I could barely walk through the house let alone to the swimming pool. Even if I was able to make it to the pool, there was no way I could swim safely by myself. I was terrified that if I tried I might fall asleep while swimming and drown or that I would suddenly be too tired to make it to the edge. Not a good thing!
Like I said - this was for sixteen days. That was how long I had samples of this medication for. On the seventeenth day I was back in Doc Feely's office for a check up. I told him about being bone tired. His reaction? To merely decrease the dose and tell me that I would eventually "get used to it."
Heartened by the idea that perhaps the lower dose would make things better, I left the office and filled the prescription for the lower dose.
Then I took the medication and waited. And waited.
Not too surprisingly, the change in dose did little to improve my tiredness. Sure, now I could stay up for ten hours a day or so but I still couldn't drag myself out of bed in the morning without much effort. In fact, the best way for me to get going was to sleep until about noon. Then I could get up and do stuff around the house.
At least until after dinner when I took the next dose of medication. From that point on, I just got more and more tired until I fell asleep and slept like a rock all night (yes, even after sleeping until noon during the day!).
Sleeping like a rock was sort of nice since I have always been a very light sleeper and have perpetually had difficulties actually falling asleep. With this med there was no difficulty falling asleep or staying asleep. It was the waking up that was a problem!
In addition to the sleepiness I was dealing with mental fogginess when I was awake as well as some "disconnectedness" where my mind and my mouth just couldn't seem to set in sync. I would be thinking stuff but couldn't get the words out. I even forgot words at times. NOT like me at all! Beyond the mental stuff I also started to get "restless joints." My knees and elbows felt like they were full of tension and the only way to get rid of the tension was to move, move, move.
Not too much fun when trying to fall asleep but even this didn't keep me from falling asleep quickly!
During the time of the "lowered" dose my parents came to visit.
Normally, I love when my parents visit. I go shopping with my mother and walk in the mornings. I stay up late talking to them and generally having a good time. This visit, however, was a bit different.
I did walk with my mother in the mornings but would then be forced to take a three hour nap as soon as I got back to the house to prevent becoming a nasty person due to being tired. When I was awake I didn't really feel like doing too much. I was too tired. When we did actually do something, I had to really push myself to do it. I also had to watch myself closely to keep my crankiness from rearing its head too much (I get remarkably cranky when I am tired!).
By the time my parents went back home I was feeling horrible. I feel like I was cheated out of a real visit with my parents. I also feel horrible that they came all this way and then I ended up sleeping most of the time.
Now, please don't think that I just let this period of extreme sleepiness and fogginess fly under Doc Feely's radar. I sent him an email documenting the side effects I was feeling (and including my speech therapist's concerns about the mental fogginess being neurological and not being a good mix with my SD - also neurological). The email listed everything that was going on and asked if these were "normal" side effects. True, I didn't really say that I wanted off the meds but I was hoping that with so many problems, Doc would come to that conclusion himself.
The email I got back simply copied my question about these all being side effects and said "Yes. Take a walk every day and you will be better."
I was stunned that this was the only response I got back from a DOCTOR who had given my anti-psychotics!
After digesting this response for a few days (so that I didn't respond with too much anger), I emailed again asking if he was serious. I also told him that this was a reason I didn't give him too much feedback between visits.
His response? Two words. Yes (meaning he was serious) and no (meaning he wasn't surprised that I didn't tell him much between visits).
Talk about depressing! I was rapidly reaching the end of my rope. I felt hopeless. Like my life would get no better and, if it didn't, it wasn't really worth living. The deep pit of depression opened up before me just inviting me to jump in and wallow.
I will admit that I did a little wallowing while trying to figure out what in the world to do.
I also talking to my parents and to my friend, Donna.
Both my parents and Donna told me to stop taking the medication since it was obviously messing me up. I contemplated this for long hours (well, the hours I was awake). I finally decided that I was going to quit the meds.
Then I told Hubby. I had been relaying everything to Hubby about my side effects and Doc's emails and how I was feeling. He wasn't happy. He was very upset that I was so depressed and upset but he still couldn't bring himself to accept that I would stop taking meds that Doc had prescribed. After a rather heated exchange over dinner one night, I relented and agreed to continue taking the meds.
This was the lowest point during this entire experience.
Suddenly, the hopeless situation became even more so. I was going to be condemned to live like this for the rest of my life.
Talk about depressed.
I did start walking each evening (I would prefer to walk in the morning when it is cooler but - I couldn't get myself up to do that. That meant that I had to walk in the evening so I could avoid the sun.) Feeling bad for me, Hubby started walking with me.
During our walks Hubby started noticing that I was bone tired. Some evenings I could barely drag myself to the end of our normal walking route. He also noticed that my mood was depressed and that I didn't have any of my old "spark."
After less than a week, Hubby told me that he wanted me to stop taking the medication. He told me that he didn't want me to be a "zombie." He told me that anything would be better than having me feel like I did on the meds.
With the support of Hubby, I stopped the meds cold turkey (probably not the right way to do this but do you think I was going to email Doc Feely and ask his advice on weaning myself off???). That was last Friday. The last pill I took was Friday after dinner (we didn't have our talk about stopping until our walk later in the evening).
For the first time in a long time, I felt a glimmer of hope.
On Saturday morning it was business as usual - remember, I had taken the meds the night before. However, I didn't take any meds on Saturday so Sunday morning I was much more awake than I have been for months! Not quite normal, mind you, but much better. The only bad thing was that I couldn't fall asleep at night. In fact, I think I only slept three hours Saturday night.
Sunday night wasn't much better. I ended up "playing" on the computer until about 4:30 A.M. then tossing and turning for another hour or so. I drifted into sleep only to be awakened by Skor at 6:20 or so. After making sure the cats had food and taking my meds (NOT the anti-psychotic causing all the trouble) I went back to bed for about an hour before being woken by a phone call from my dad. He was trying to get his phone system worked out.
I stayed up to chat with Mom on IM and then took a short nap. I was determined not to sleep all day since I was already having problems sleeping at night.
By Monday night I was exhausted. Hubby and I took our evening walk and I kept myself up longer than usual on purpose.
Then, miracle of miracles, I slept!
I actually slept!
Now, I didn't sleep really well but, I actually fell asleep with little trouble and slept!
This morning I woke up feeling better than I have felt in months. I felt awake and bright and full of enthusiasm! I even found myself dancing along to music from a podcast as I got dressed!
What a difference!
Hopefully, this is a sign of things to come and this entire, horrible experience will be behind me forever!
Did I mention that I am looking for a new doctor?