When the constant weight was lifted. My experience with ECT.

How often have you been in a seemingly dead end situation and thought to yourself,  "That's just the way it is" and figured there was nothing more you could do?

Sometimes we don't know how much we're carrying around until we aren't carrying it anymore.  You get used to the weight and after so long, you just start to accept that that is how life is. 

This was how I felt at the beginning of 2012. I had surrendered to the weight of depression.
After nearly 4 years of coming off of one of my anti-depressants (Effexor) and trying multiple other medications, my psychiatrist and I finally found an anti-depressant that worked pretty good.  (Or so we thought.)  I was feeling better than I had in quite awhile even though, looking back now, I was still dangerously near the edge. It seemed "normal" to wake up feeling exhausted and drag myself around the house, as if weighed down mentally and physically by some unseen force. I was used to not feeling much, if any, passion for life. The positive side was I wasn't having anymore thoughts of death. In my mind, I was doing pretty good.
 My psychiatrist, husband and family saw things differently.

When I went in for a follow-up visit in February 2012 my psychiatrist thought I was only functioning at about 30% where a person with normal or good mental health functions between 70-90%.  I thought 30% seemed doable. I was not completely lifeless. I still laughed at funny jokes and had moments, sometimes even days of what I thought was happiness. That was my life. That was what I was used to and what was familiar to me.   

My psychiatrist mentioned ECT and explained that ECT, or Electro Convulsive Therapy had been effective in treating depression in patients who weren't responding well to anti depressants.  After my doctor explained how ECT worked and why it could really help I was very skeptical. The thought of being put "under" and then having my brain shocked, causing me to have a brief seizure, seemed too extreme. I was sure it wasn't something I would ever try. Still, I came home and looked up everything I could find on the internet about ECT. I talked to my husband, family and some of my friends about ECT and found out that a friend of mine worked with a man whose wife had undergone ECT treatments. We emailed back and forth and he told me ECT wasn't a "cure all" but it helped.  That was encouraging to hear since his wife had experienced what I was experiencing and had found some relief.  I still wasn't convinced but my husband and doctor continued to encourage me.

In my mind, ECT was for people who couldn't function at all.  People who never laughed or smiled, etc...  To my husband, sister and the rest of my family, ECT was just another step in determining what would work best.  They had seen me at my best and didn't think I should settle for so little.

One night in April of 2012, I happened to be talking to my youngest brother, whom I've always been close to. He told me that I had to let go of the "good" in order to get to the "best." I thought his words were profound for they really touched my heart.  His words, in addition to my husband's wishes and my doctor's recommendation brought me to where I was willing to try the treatments, even though I was SO scared. 

My first treatment was scheduled for April 23, 2012. On the nights before treatments I couldn't take an anxiety or sleeping pill which made for a long, sleepless night.  Early, on the morning of the 23rd,  I drove myself to the hospital.  My husband would later take the bus from his work to the hospital to drive me home after my treatment.  After I checked in and got changed into my hospital gown, I was trembling with anxiety. Up to that point I had not felt peace about what I was doing but as I waited in the quiet of my room for the nurse to come put an IV in my arm, a feeling of peace came over me and I felt for the first time like everything was going to be okay.  I fought hard to contain my emotions but it was no use.  As that feeling of comfort and reassurance washed over me, tears streamed down my cheeks. I needed that feeling of peace more than anything else.

Quickly trying to gain my composure before the nurse came in, I wiped my tears and blew my nose.  Luckily the nurse didn't seem to notice my red face when she came to put in the IV.  After waiting in the hospital room for an hour and a half to two hours, I was finally wheeled in my bed to where the procedure would take place.  My ECT doctor and an anesthesiologist had a section off to the side of the surgical recovery room where the procedure was curtained off.  As my bed was wheeled into place, I could feel that familiar lump in my throat and my heart pounding wildly in my chest.  I was hooked up to the machine that monitors your heart and other vitals.  My breathing became fast and shallow and the beeping of the heart monitor quickened as my bed was laid back and the anesthesiologist prepared the medicine that would put me to sleep. As the oxygen mask was placed over my nose and mouth, I looked to my doctor as if asking him for reassurance and he told me that he would take good care of me.  The injection stung as it went through my IV and into my arm.  I felt like I hadn't slept in days and then suddenly I was out.  When I started to wake up, only 40 minutes had passed by.  I tried to open my eyes but everything was blurry and I was disoriented.  I heard someone moaning from the bed next to mine and a nurse asking me strange questions like, "Do you know what today is?" and "Can you tell me where you are?" I just wanted to close my eyes and go back to sleep...that wonderful, safe place where I could escape the way I felt.

Minutes later the nurse was talking to me again and I was able to answer her questions.  From there I was taken to another recovery room with lounging chairs to sit in until I could safely walk out of the hospital. My husband was there waiting and he was such a welcome sight! About 3 hours since the time I first arrived at the hospital, I was ready to go home.  I fell back to sleep in the car and continued to sleep after we got home. Just a few hours later I felt like my normal self and I was impressed that I could remember everything that happened.  The treatment period was supposed to be 3 treatments a week for 4 weeks.

After my 4th treatment I felt like the weight of the world had been lifted from me. It was as if a light had finally come on and exposed all the distortions of my mind.  I could think and see things clearly!  While blinded by depression it was as if I could only see a few feet in front of me - now I could see for miles and I marveled at the beauty all around me.  For the first time in my life, I felt alive and excited about the future. I was finally able to recognize that I was not depressed because of my selfishness and weaknesses, there was truly something chemically wrong in my mind. Only when the weight of depression was lifted was I able to see just how much I'd been carrying around with me for so long.

Thinking I had finally found a way to stop my depression or at least keep it in check, I felt indescribable relief and happiness.  I thoroughly enjoyed the next several weeks and we did all kinds of fun stuff as a family. I finished the 12 treatments by the middle of May of 2012 and it was as if I were a new person - a happy and positive person, the person that had been struggling to emerge since I was 9 years old.   

Two weeks after the treatments ended, my insomnia and anxiety returned and I felt like I was slipping back fast. Feeling desperate not to go back to that hellish place in my mind, I called my doctor.  He explained that some of his patients had been having treatments for years. Years? I was hoping my new found feelings of happiness would last at least 6 months to a year and then maybe have a few "maintenance" treatments and be good for an additional length of time.  My hopes were dashed when I slipped back so quickly.  My doctor and I decided that I would come in every 7-10 days to have a treatment.  After another few ECT treatments my anxiety again subsided and I slept well.  Our summer was packed full of fun activities that I finally had energy for.  I was the girl's camp director for my ward and I got to go on the Pioneer trek with our Stake.  By the middle of August 2012, I had had a total of 23 treatments.  I started school on August 22nd and I didn't want to devote any more time to treatments. 

Again, roughly two weeks after I had stopped treatments, I felt like I was back where I began the April before I had started treatments, if not worse.  This was very discouraging.  I felt like everything I had done up to that point was wasted - all the money, time, everything. It's hard to describe exactly what I was feeling but my thoughts raced, I felt incredibly irritable, out of control, hopeless and beaten.

During Labor Day weekend, I was determined to get out of the house no matter how awful I felt.  We decided to go as a family to Seven Peaks water park. We had season passes but had hardly used them. It took all the mental and physical energy I had just to get everything ready for the day.  When it came time to leave, my then 13 year old daughter decided she didn't want to go.  I was crushed for some reason.  My overwhelming feelings of being so out of control and trapped inside a mind that seemed completely incapable of seeing anything but doom and gloom, was more than I could bear for even one more hour.  Feeling helpless and desperate, I took 6 of my sleeping pills. I wished I could die although that was not my intention when I took the pills. I just wanted to escape my relentless negative, draining thoughts and anxiety.  As I headed for bed, I must have mentioned what I had done to my dear husband.  I was sure that 6 sleeping pills would not kill me but my sister had told me about a woman who had died from taking 5 sleeping pills, which scared me a little bit.  My husband tried to get me to go to the hospital.  I told him I would be fine, I just wanted to sleep for a long time.  After I laid down he called an ambulance.  I was asleep when the EMT's arrived at our house, then I was taken to the nearby hospital where I woke up enough to drink liquid charcoal and was monitored while I slept.

Later on I was transported to LDS hospital and checked into the psychiatric unit, where I would spend the next 6 days.  During my stay my ECT doctor saw me and suggested we try a more invasive treatment called bi-lateral ECT.  I would be shocked on both temples instead of just one.  I was told I would experience a lot more memory loss but I didn't care at the time.  I felt as if I had nothing to lose.  I began the bi-lateral treatments while I was an inpatient at LDS hospital.  With each treatment my mind became more confused and my memory loss got much worse.  After my 6th bi-lateral treatment I refused to have any more ECT treatments done.  I had lost so much of my memory about what had happened during that summer full of fun activities and I could no longer spell a lot of common words.
  
Again, my anxiety and depression returned and I was jittery, irritable and felt out of control.  My husband kept bugging me about going to see an endocrinologist to have my thyroid levels checked.  I wasn't thinking straight and it took all my energy to focus on just trying to survive each day, sometimes each hour.  Finally, the end of October in 2012, I went to see my family doctor and then an endocrinologist.  The endocrinologist said my thyroid levels were "off the charts" He told me if he had had thyroid levels like mine he would have been taking anxiety pills all day long.  My TSH was 0.01 meaning I was being over-medicated on thyroid medication.

Back in January 2012 my thyroid was tested and my TSH was 15.25, meaning, my thyroid was functioning too low.  My doctor put me on 100 mcg of synthroid and I was to be retested in 6 weeks.  Unaware of how much your thyroid can affect your body and mind, I didn't even mention my thyroid problem to my psychiatrist when I went in for a follow up visit in February 2012. Nor did I go back and get retested in 6 weeks.  This was a HUGE MISTAKE on my part. I just wasn't thinking clearly or logically but getting on thyroid medication at the end of January 2012 is probably what was making the most difference in how I felt in February and March of 2012.  Not the "new" anti depressant.


On November 8, 2012 when I found out I most likely felt so awful because of my thyroid, I was overcome with relief.  That meant I wouldn't feel so awful forever!  Finally, there were answers and solutions.  I would get better and should notice a huge difference in just a few weeks by lowering my thyroid medication to 50 mcg of Synthroid.  

It is now May of 2014.  Many ups and downs have occurred over the last year and a half as my doctor and I try to find the right dose and medication for my thyroid issues but I've seen so many positive changes.  I'm in a much better place mentally and I no longer beat myself up relentlessly when I need to take a nap or when I'm not physically or mentally able to accomplish everything I want to do.  During the time when my levels were great, I was able to run 5 miles in 56 minutes.  During the time when my thyroid levels are too low or too high, my muscles feel so weak and I feel tired a lot, unable to do much exercise. But, all things work out with time and effort.

Unfortunately not all of my depression is caused by my thyroid issues. (I wish it were!)  My depression started a long time before I had any thyroid issues.  Looking back at medical records, my thyroid was on the low side in the summer of 2008 but my doctor just wanted to 'keep an eye on it." I've tried decreasing my anti-depressant dose a few times without any luck but I have been able to get off the mood stabilizer that I was put on in September 2012 and I'm down to only needing half of a sleeping pill at night.  I've also been off of my anxiety medication for 2 weeks now.   "Slow and steady wins the race." :)

Would I do the ECT treatments again if I had the chance to go back and do things over?  That's a hard question to answer.  I might have never known just how much I was carrying around or experienced such a dramatic change....even if just for the few month's I had treatments done, had I never had the treatments.  One thing is for sure, I don't recommend bi-lateral ECT treatments to anyone.  I still have memory issues but slowly, especially as people remind me of certain events, my memory has and continues to return.  I can spell again, too! :) 

You know, if you or a loved one is struggling with depression that is not easily treated with an anti-depressant, please see an endocrinologist.  I can't help but think about how differently things might have turned out had I just focused on my thyroid issues to begin with.  But, we are here to learn....sometimes the hard way.  I just hope my experiences can somehow help someone else who is struggling.

May we all keep on, keeping on.  It is all worth it!

Sincerely,
Shirley


P.S.  Feel free to ask me anything you want to know.  After struggling for so many years, I've heard pretty much everything and I will be perfectly honest and frank.  I don't feel I need to hide anything anymore.
I would also love to hear what experiences you or your loved ones have had.