Friday, August 24, 2012

Medical Roller Coaster

I will admit that I was naive when it came to antidepressants. My first therapist said that I could make it through without them and I believed him. My next winter semester at BYU I found myself struggling. Old habits die hard. I started seeing a counselor at the counseling center but didn't really find her helpful. I decided to go see my doctor and tell her how I was feeling, and she put me on Lexapro. I'm not a very good pill popper, so slowly over time I stopped taking it. Did my doctor ever follow up on me? No. I ended up withdrawing from all of my classes that semester even though I only had about a month to go. All of my professors were understanding. Many of them told me that BYU wasn't going anywhere and it was more important that I take care of myself. That was my only experience with an antidepressant until this January.

A close friend that is also a counselor advised Tom and I that I should seek the help of both a psychiatric nurse practitioner and a therapist once I got back from Utah for Christmas. Tom and I carefully and prayerfully considered this and felt strongly that this is what I needed to do. Once we got back to Eugene we soon discovered how hard it is to get an appointment with a psych nurse. The closest appointment I could get was a little more than a month out. That appointment gave me a lot of hope and a date to reach for.

In January I began to find the anxiety unbearable. I found myself walking outside for hours because it was the only way I could cope with it. I didn't want to stop, but eventually my energy gave out and I would have to return home. I knew I needed help and as we talked with family and friends and were prayerful Tom and I decided to visit the ER. It was a big step for me. Up to that point I had only been to the ER when my mom was in a car accident. I didn't know what to expect or what to say. At this point in time I was not suicidal but was worried that if the anxiety persisted that I might find myself there. I expressed this and quickly found myself in what I call the "crazy" room in the ER. It is a weird shaped room with two benches that are covered in black fake leather. There are windows in one corner where the security guard can keep an eye on you. They take all of your possessions and lock them up. They then have you change into some thin scrubs. They bring you warm blankets and then different people come in to see you. Someone to fill out the paper work, a nurse, a doctor, and then finally a social worker. They all ask you the same questions.

I was given three options. I could admit myself to the hospital (Tom was against it), check out the Royal House (where you can come and go), or make a plan of what we would do once we returned home. We went with the plan of safety. I was also given four pills of Ativan to help with the anxiety. I was told to make an appt. with my doctor quickly for a follow up. Well it was a holiday weekend and the soonest we could get in to see my doctor was the following Tuesday. I would run out of Ativan by then. So we went to Urgent Care that Saturday. The doctor was very sympathetic and understanding. She gave me a prescription that would last me beyond my doctor's appt. Well we didn't want our pharmacy to think we were going around trying to store up Ativan so we cancelled my doctors appt. and made one closer to the time that my prescription of Ativan would run out.

I will admit that I loved Ativan. The first time I took it I was able to relax enough to take a nap and Tom finally got some time to himself. We were warned by a number of people that it is addictive so try to stay on a low dose. We also found out that it is one prescription that is very marketable and abused. I started on a low dose but eventually went a little higher. It took about a half hour to kick in and I could tell when it started to wear off. Those who saw me soon after I took it could tell that I was different. I felt a little groggy and so much more relaxed.

Well the time came to meet with my doctor. We tried to explain to her that we had an appt. with a psych nurse but she either didn't know what that was or thought she could do better. She gave me a prescription for Xanax and a low dose of Zoloft. Xanax is very similar to Ativan and is an antianxiety medication. I'm not sure why she made the switch. Zoloft of course is an antidepressant in the SSRI class. When I went to pick up my prescription the pharmacist warned me that the first ten days or so I would actually feel worse. I call those ten days my Ten Days of Hell. They were terrible. I even taught Sharing Time during that time. I have no idea how I pulled that off, but I pulled through. The hard thing about antidepressants is that they usually take around six weeks to kick in and for you to notice a difference. Lots of waiting, but I was still hopeful.

The day I had been holding out for finally came: My first appointment with my psych nurse. I have a friend that sees a psychiatrist, and she gave me some information about how it all works so I felt prepared. We were just about to walk out the door when we noticed we had missed a call and had a voice mail. Well it was the office of the psych nurse letting us know that she was sick and wouldn't be in that day. Tom called them and found out that the next time they could fit me in was more than a month away. I was devastated to say the least. Tom started calling other offices to see if we somehow couldn't get a closer appointment. Well one office was just getting a new psych nurse, so I was able to get an appt. a week later. A HUGE blessing and miracle.

But in the meantime my mood decreased dramatically. I snapped and had my first episode. Tom stayed in close touch with my therapist who talked to her husband about the situation. As I have mentioned before he works at the Johnson Unit. He isn't a psychiatrist but is very well versed in all of the medication. He immediately advised that I go off the Zoloft. He believed I was having a bad reaction. As it turns out I was on a ridiculously low dose for someone my age, and the fact that I had such an adverse reaction to it rang some bells.

Well I finally had my appt. with my psych nurse. She shot question after question at me. I could tell that some of them were the same question but phrased differently. I was open and she took what I said seriously. She had my mother-in-law and I remove certain items from my apartment and that is when she told Tom and his mom that under no circumstances was I allowed near the river alone. I found it a little scary that she took what I said so seriously but at the same time I began to feel heard and more safe. Since I had such a bad reaction to a medication in the SSRI class I was given a prescription for Wellbutrin that is in another class (aminoketone class). I was told that it would make me a little antsy but would get me doing things. I was also given a prescription for Ativan once again. This time my psych nurse was switching up when I would take it. She wanted me to be able to get the sleep that I needed. I wasn't exactly happy about this. I wanted to be able to cope when I was awake. The morning after my appt. my psych nurse did a follow up call and Tom voiced my concerns to her. She decided to put my on an antipsychotic drug that would keep me from impetuous behaviors. I was put on Abilify.

Well the next day we got a call from the office saying that my psych nurse had decided to retire instead of move to a new office. Once again I was devastated and wondering if anything was going to work out right. Luckily since I had met with her I had my foot in the door and was able to get an appt. with a different psych nurse who I love. So in many ways it was still a HUGE blessing and miracle.

From that point on it is a blur as to when I was taken off or put on a new medication. It became apparent that I am quite sensitive to medications. The three antipyschotic drugs I was put on all had side effects that I wasn't willing to take the risk of them lasting even beyond the time I stopped taking the drug. Haldol and Abilify caused restless legs. I could not hold them still. I attribute to that fact that I actually got up to bear my testimony the fast Sunday after I got out of the Johnson Unit. :o) Needless to say I was taken off those two (was not on them at the same time). Seroquel was an antipsychotic that would help me sleep. I was put on a low dose (every time you start a new drug you are put on a low dose that won't really do anything but help your body get used to it). I was in the middle of writing an email when all of a sudden I knew I needed to make it to my bed. Tom actually had to carry me to bed and take off my shoes. I was out. Sometime in the night I got too hot and had a sweatshirt on. My body felt like a ton of led bricks and so it took me forever to wriggle out of it without being able to lift any part of my body. My psych nurse called the next morning and freaked out when she heard what happened. She suggested that I take an even lower dose. Well there isn't a generic of Seroquel and so we had to pay $55 for it even after a large insurance discount. We weren't willing to pay that again for a lower dose when we had a full bottle, so Tom carefully cut a pill into fourths. For the next two nights that is what I took. I didn't have the same extreme reaction, but I felt groggy and horrible. I spent both days in bed. I decided myself that I wasn't going to take it anymore. It just wasn't worth it. I haven't been put on an antipsychotic since.

I took all of my medications with me the second time I visited the ER with the intention of being admitted. Of course all my possessions were taken away and not given back until the end of my stay. I went off Ativan cold turkey. My first full day in the JU was difficult. I wanted to break through the window and run. I was going through withdrawals. My therapist's husband came to my room and visited with me for a bit. I asked him all the questions I had about medications. I was put on another antianxiety medication but wasn't feeling a difference. He said I didn't notice it because it doesn't give you that initial high but that its effects actually last longer. I told him that I wouldn't call it a high, but as I've thought about it he is right. Ativan makes you feel like you don't have a care in the world. It relaxes you, and when my friend saw me for the first time after I had been taken off of it she noticed that my eyes weren't glazed over and I seemed to be more present. The antianxiety medication I am presently on is still addictive and I have lowered the dosage a little, but to me it doesn't feel addictive. When I left the JU they gave me back my bag of medication which was sealed off in two bags with strong tape. I had a nurse help me open it, and I gave her the bottle of Ativan. She asked me if I was sure and I told her that if she didn't take it I would. I sometimes still find myself craving that "high."

I came out of the JU weak physically. My psych nurse was concerned, so she put me on Remeron. The goal is that it would help me sleep while also increase my appetite. The interesting thing about this drug is that the lower dosage makes its side-effects stronger. The higher you go those effects lessen. I have been on Remeron for months. When I got back from California and started having trouble staying asleep my psych nurse started to decrease my dosage. She was concerned because I was doing things at night that I have never done before like sleep walk and talk in my sleep. I haven't had a normal night's sleep since California with the exception of my time in Utah. We dropped the Remeron to its lowest dosage and it made no difference to my sleep habits, but I did find myself eating in the middle of the night because I was so hungry. We are now in the process of upping the dosage since it isn't helping me sleep and eating in the middle of the night isn't helpful either. :o) I also have noticed a dip in my mood.

A couple of weeks after my time in the JU I felt the brunt of the depression. All of a sudden it was hard to get out of bed each morning. I had no desire to do anything. I kept asking myself if I had a choice would I rather feel anxious or depressed. I was told over and over again that I needed to "fake it til I make it". I did not want to fake it. For some reason I fought it for a few weeks. During this time my psych nurse put me on another antidepressant that works well with Remeron. It is called Effexor. I have to eat before I take it in the morning or else I get a horrible stomach ache. I've noticed that even then I sometimes will feel nauseous afterwards. Now each time you add a new drug or adjust a dosage you take the chance of having the opposite side effect than you want. I feel blessed that I haven't had that problem since I stopped trying antipsychotics.

A couple of weeks after being on Effexor my therapist began to notice a change. She literally became giddy. I was cautious. I have shown great improvement over the last couple of months. Things that in the past would have caused me to spiral downward I am able to slowly take in stride with the help of my therapist. Every time I see her she always tells me how good I'm doing. I don't always feel that way, but I'm sure she observes more than I do. Am I not anxious or depressed anymore? No. Recovery takes time. Lots of time. Especially as you begin to enter the world again and take on more responsibility. I have to keep reminding myself that I need to be patient with myself. There is no rush. I just need to do what I can handle and say no to everything else. Easier said than done.

So for right now I am on three antidepressants, one antianxiety medication and a natural sleep aid. My psych nurse hopes that I can be weaned off the antianxiety medication and that I won't stay on all three antidepressants. So there is still more change in my future. Once we get the medication stabilized I then stay on it for a year. After that time I guess I meet with my psych nurse and see where we want to go from there. I may slowly start weaning myself off the medication, but if I take a dip in mood then I will most likely need to be on medication the rest of my life.

For years I have watched the commercials about different drugs. Some seem to be the answer to everything, but then they go and list the side effects and I wonder who in their right mind would take that risk. And now I find that I am taking that risk. It really has been a medical roller coaster! I never knew how complicated it could be. How horrible it can be. I am always tired and often have a metallic taste in my mouth. Minor compared to what side effects I could be dealing with. I have a friend that has become diabetic because of the medication she is on. Every so often I probably will have my blood tested to make sure that the medication isn't affecting anything else in my body. But I have learned when Heavenly Father tells you to do something, you do it. Even if it is an adventure you would rather not live.


Thomas said...

I truly hope that you have had the worst of it. I think the Remeron is helpful, but I don't know about the effexor or the welbutrin. I'm also nervous about taking you off of the antianxiety. I pray for you and wish you luck! I hope the rollercoaster is calming down a little. :)

Anonymous said...

It was very interesting to learn about all of your different medications, because I wanted to better understand what you were going through. I will definitely have Nate read this blog post so that he can explain to me in more detail what all these drugs do and mean. He has been very interested in your well being!

I'm truly sorry you have had such a rough roller coaster ride with medications and hope you can find one that doesn't have terrible side effects and helps you to feel stable.

Love always,