After I filled you in on my med change decision in The Search for Normal: A Struggle With Anxiety and Depression I felt I needed to give an update. I am almost a week into my journey of changing anxiety and depression medicine after getting my results back from Genesight. Overall, the week has gone smoother than I may have thought, but there have definitely been bumps.
Some of those bumps of course are self created. During my appointment with my psychiatrist we decided I would move from taking 20mg of my current medicine (a full dose) to taking 10mg for four days and then taking 5mg for four days. We hope by then we would be ready to start the new med.
I gotta tell you that first night I went ahead and took the full 20mg again. My husband seeing me take the 20mg pill just looked at me and said, “Aren’t you supposed to be weaning down?” I replied, “Yeah, but we have a lot going on tomorrow, I’d better go with 20mg tonight.”
If you can’t read between the lines, I’ll just tell you I was scared of weaning down. Scared of how it would make me feel. Scared of how I would react.
The next night I didn’t feel much braver, but the hubs looked at me and said, “Take the 10mg. It’s labor day weekend. We’ll be around with you for days.”
Sidenote: I really love my husband. He should be made a saint or something.
So I opened the 10mg sample bottle I was given for just this task and took the leap. Then I chased it with my nightly dose of Klonopin and went to bed. Best not to overthink these things.
The first couple of days were not that bad. From time to time I could feel myself “checking my emotional temperature,” but nothing catastrophic was happening. I was a little cranky and anxious but I think a lot of this came from my own nervousness about the endeavor.
For here is one of the horrible truths about anxiety. You are often your own worst enemy. Since I have had bad experiences going on a new med before (read previous Search for Normal post for Paxil nightmare story), my mind and to some extent my body remember this trauma. They tense up and brace for it to happen again. The fear that is created by the dread is enough to make me feel worse. It is a self perpetuating cycle.
So I tried to simultaneously keep my self busy and be gentle with myself. There was a lot of movie watching and reading and cuddling kids and dogs. Mostly I just pressed on with it all. Two days of 10mg down, two to go. Just keep swimming.
All this while I know there is another step coming. My doc told me to drop off the prescription at the pharmacy right away as she knew there would probably be some dance between her and my insurance company on getting them to cover it. She thought that since we had the genesight results and my reports of side effects from my current med that we should be okay.
Well, let me just tell you. It was not okay. After haggling back and forth my insurance company told her that they were refusing to pay for my med. Even though it was on their formulary. Even though Genesight called it one of my best. Even though she has seen patients do great on it, recommended it for me and asked for me to be given the drug.
They refused to pay.
Why? Because the drug is expensive and they want me to try every cheaper option first. Even if it is not the best drug for me. Even though there is a chance the cheap drug will either not work as well or give me difficult side effects.
After losing the fight with my insurance company my doc called me and left me a message that we were going with a new drug that she thought my insurance might cover and to stop by to get the script so I could drop it off right away. Because of the dance.
But instead I had a panic attack. Because it had taken several minutes of my Doc giving me a pep talk on how she felt good about this new drug and how it was going to be great for me and how it wouldn’t cause horrible side effects like I’ve endured before or even the less horrible side effects of weight gain or loss of labido. . . .
(Okay, let’s just pause a minute and let it soak in that I’ll tolerate gaining 50 pounds and having to be talked into being intimate with the love of my life because both the experience of acute anxiety/depression and the side effects I’ve endured from other meds, yes you Paxil, were so bad that being obese and unsexy seemed like workable and even preferable options.)
It took this five minute pep talk to convince me this new drug was going to be okay. That I was going to be okay. Because I could trust the science of the Genesight test. Because I can trust my Psychiatrist. There was a lot of trust that went into me agreeing to change to this new med.
And then. Then my insurance company goes and blows all that trust building and bravery out of the water by refusing to cover this new med. And to pay it out of pocket would cost $200 a month. Or $2,400 a year. We could do that. But why should we have to? When I have an illness and there is a drug that will treat that illness but my insurance company just doesn’t want to spend that much money on me even though I pay them a buttload of money in premiums each month for just this sort of thing.
So after getting the phone message from my Doc I am crying and having a panic attack in the bathroom where my children can’t see me, frantically looking up this new med. A med I have not had a five minute pep talk about. A med that was not the first one my Doc pointed to and said, “I really like this one. This one will work really well.” And as I’m reading reviews on the new med which I know nothing about they are very mixed. Some people had horrible reactions, for some people it just didn’t work, and some called it a life safer.
Because here is another horrible truth about anxiety and depression. Even though there are wonderful meds out there that can help treat the illness, finding the right one for you is really a crap shoot. The drug that saves one person’s life causes another to fall into a suicidal hole. The drug that calms one’s person’s raging fear can ramp another up into a nightmarish fit of anxiety and irritability.
I cannot even describe to you what some of the side effects of psychotrpic drugs feel like. I can only tell you that the experience of them was so bad I would not wish them on my worst enemy. The best I can approximate is that it is like a drug trip gone VERY wrong. And my experience was not even worst case scenario.
And the worst thing is you are not experiencing these roller coaster rides as a strong, healthy individual. You go in already weak and broken and then the drug messes you up even that much more.
Until you either ride out the first few weeks of your body adjusting to the drug and finally hit stability and then healing or you find the right med that works for you with no bad stuff on the side.
And then it is like a miracle. Because you suddenly feel so much better. And you never had to feel so much worse to get there.
And that was the real hope of the Genesight test for me all along. That I would find the right drug that made me feel so much better without having to deal with so much worse. Not even 50 pound weight gain and decreased labido.
After a talk with my husband (saint I tell you) I work up the courage to drop off the second drug at my pharmacy this morning. Because Genesight said it was good and my Doc choose it second. And I have to believe she wouldn’t send me home with anything that was bad for me even if it isn’t best.
And as I’ve typed this post I’ve gotten not one but two automated two from my pharmacy telling me they cannot fill this med until they get prior approval from my doctor. As if her prescription were not approval enough.
And while I wait for my Doc and my insurance company to agree on SOME medicine I can take for my illness, not my inconvenience nor my personal problem, but MY ILLNESS, I press on. I keep taking the 5mg of my old drug for a few more nights even though I can feel a difference now. It is nothing horrible or unmanageable. I can just feel that this net that was keeping me lifted up above the abyss of sadness and angst is slowly loosening its hold. It takes less to irritate me or work me up now. I feel a little more fragile. I cannot do as much in a day without coming to the end of myself.
So I’ll keep reading fiction and watching movies and drinking herbal tea and breathing deep and singing along to the radio loud and doing the hundreds of things I’ve learned through years of therapy and trial and error that keep the abyss at bay. And I’ll hold tight to the family and friends that surround me in a delicate time and hold me up and push me on and keep me going.
But there are moments when I am just so angry. Angry I have this disease of anxiety and depression. Angry that science and medicine are still so clumsy in treating it. And I’m furious at my insurance company that when I need them most they do their job in providing for me the least. That they refuse to do their job so they can improve their bottom line. That they take sick people’s lives which are already hard and make them even harder.
I pray that one day mental illness will get the treatment it deserves. Both from good science and research and from insurance companies who do their damn job.
Until then friends, just keep swimming.