Before getting into this post, I want to say that it is long. It is hard to be brief in describing what was going on with my health a few years ago, and the story is hard for me to tell in a linear fashion. There are competing factors at play and each could be their own story (viruses, menopause, antidepressants, the medical community). I have tried to tie these factors into a brief narrative with a coherent storyline, but the experience doesn’t lend itself to simple telling. You will get a good background here, and then I will delve into distinct areas in other posts. My apologies to the reader for this non-linear approach!
In my Sleepless in Scandinavia post, I describe unending insomnia and a growing number of symptoms. For some reason, once we were back from our trip and even though my body felt completely “off,” I (sort of) continued with my life for a few weeks. I was exhausted each day by lack of sleep and my switched-on body and brain made it hard for me to concentrate at work. That didn’t stop me, though, from attending a nephew’s wedding in Chicago. My husband and I made the three day trip to Chicago. It was actually a fun weekend, though punctuated by some new symptom development: feeling like all chairs I sat in were vibrating and experiencing moments of severe exhaustion where I thought I might collapse and not be able to get up. I skipped an evening event, claiming I might be getting a cold and wore my best game face at the wedding and hoped that nobody noticed how tired I looked, how thin I was, that I was not drinking any alcohol or dancing (I’m usually one of the first people on the dance floor).
Things did not improve after we got back from Chicago. The severe fatigue continued. Simple tasks such as walking up the stairs in our house, washing dishes or making toast left me exhausted and required rest afterwards. Sleep remained elusive, though I tried a number of remedies including edibles and passion flower tinctures. I realized that the vibrating sensation that I noticed on the Chicago trip was my heart pounding hard and quickly, all the time. Other symptoms started. Now when I stood up, my heart rate would skyrocket and I would feel like I was having a panic attack, though I wasn’t frightened and there was no sense of impending doom that accompany panic attacks. Taking a shower became nerve wracking, as I felt faint standing up in the shower; I started to sit down for safety. I was crying a lot and felt anxious (but in a really severe way, not a normal feeling), found it hard to sit still, or find humor in anything. My usual forms of relaxation – massage, meditation, exercise, time with friends – either didn’t work or were too physically demanding. Overall, I was not doing well.
I finally scheduled an appointment with my general practitioner. After hearing my story about our trip to Europe and how my body hadn’t been the same since, she ordered an EKG and some blood tests to make sure I wasn’t having thyroid issues. Though my heart rate was a bit high, and my blood pressure was higher than normal (mine is usually low), the EKG was normal, as were the thyroid tests. My doctor suggested I go back on an antidepressant and take sleeping pills, and just try to relax more, that it was probably anxiety. I didn’t want to do either of those things, and declined prescriptions. I doubted anxiety was the only issue. And much of my anxiety was about what might be wrong!
At this point, I took a some days off of work, figuring that was what I needed to get back on track. I spent my days on the couch, crying and wondering what was wrong. I wondered if I was sick and my doctor wasn’t looking hard enough. Or if I was having a nervous breakdown. Or if it was possible that I was having a delayed withdrawal reaction to getting off of my antidepressant much earlier in the year. Or if perimenopause was really messing with my hormone balances. I went back to my naturopath, who tested my neurotransmitter levels. This is a bit controversial, since you can’t actually measure neurotransmitter levels inside of your brain, but it’s possible to detect their metabolic byproducts in a urine test. Almost no serotonin was detected and the more excitatory neurotransmitters were at higher levels. She prescribed a number of supplements that she had success using with other clients to increase their serotonin, as well as methylfolate, since we also learned that I have two MTHFR gene variants. The supplements did nothing as far as I could tell, and the methylfolate did way too many things and I quit taking it after just a couple of days. My reaction to methylfolate deserves, and will get, its own post.
At this point, I told my boss I was sick and wouldn’t be back to work for maybe a couple of weeks. Honestly, I couldn’t imagine ever having the energy or emotional stability to work ever again. I was miserable, but still had hope that I’d find something that got me back to my usual healthy, active self. After tearful discussions with my husband, my therapist and friends, I decided that I would try going back on an antidepressant to see if that didn’t clear up at least the constant crying and anxiety, and what I thought might be ongoing mini-panic attacks. This was an incredibly hard decision to make, as I was so thrilled to have gotten off of Lexapro (why I went on in the first place is for another post). But I had to do something about my emotional health.
I made a couple of appointments. One was through my healthcare system. I had an intake with a lovely social worker but couldn’t get an appointment with a doctor for about five weeks. A psychiatric nurse in private practice was taking new patients, so I scheduled an appointment with her. She initially seemed nice enough during the three hour intake, but there were a number of red flags I wish I’d paid attention to. She seemed to look over things I told her, and just apply her general patient experience to me as if I wasn’t my own unique case. For example, she insisted I was experiencing nightmares, even though I wasn’t. She said that taking magnesium would give me digestive issues, even though it doesn’t (and at my insistence, she gave me a look as if to say, well, I know better). When I told her I was concerned that there may be something physically wrong with me, she said that I had been to the doctor once and shouldn’t waste their time by going back, since all I was having was bad anxiety and panic attacks. I questioned that, since I’ve experienced anxiety before (who hasn’t?!) and it has never caused me severe fatigue, faintness, inability to concentrate and a constant pounding heart. She said it definitely was anxiety and was also part of heading into menopause. I was desperate to feel better, so I ignored the inner voice that said this was not the right person for me to work with.
We chose a drug, Effexor, and I experienced four horrendous days on it before calling it quits. My heart rate got worse than it had been, my vision blurred, I had a terrifying hallucination, I lost my appetite, couldn’t taste any food and became a zombie, capable of only sitting and staring at the wall. That I was concerned about these reactions is putting it mildly. I hadn’t experienced anything like this before, and would text her with questions. She had no patience for me, insisting that these things were totally normal, to quite texting and that I needed to take it for 14 days before I could decide if I didn’t want to proceed. After the hallucination experience, I quit taking the drug. I let her know, and she dropped me as a client – via text. She said I was a non-compliant patient and too anxious. I was stunned by the whole experience. I also experienced drug withdrawal effects for about four days after quitting the drug, which she had assured me could not happen.
My physical symptoms got worse after the Effexor experience, so I went back to my doctor’s office, where I had an appointment with the group’s physician assistant. I presented my issues – insomnia, wild heart palpitations, feeling faint upon standing, fatigue, highly emotional – and she ordered some additional thyroid tests and tested my blood pressure. When I told her I started to experience symptoms after flying to Europe, she wondered briefly if I picked up something on the plane, and thought I may also be experiencing some kind of hormone issue. She did note that my blood pressure dropped when I stood up but said that it was doubtful that it was caused by anything more than fatigue. She also said I had anxiety and could take sleeping pills or something like Xanax to sleep at night. She said that most doctors don’t know anything about hormones, so she thought I might do better finding a specialist. She also gave me a list of books about stress, anxiety and meditation. I know that she provided this with good intent, but it felt dismissive and patronizing, like “Here, read these, do some deep breathing and all will be well.” I wanted to scream, “I am meditating! It’s not working! I’ve been dealing with stress fine for years! You would be anxious too right now if you felt like your body was falling apart for no apparent reason!” But I remained polite, took the reading list and got my blood drawn. The thyroid tests came back normal.
I knew that anxiety wasn’t the cause of my physical symptoms. Each day, I became less able to engage in my normal life, and at this point, told my boss I would be out for at least another few weeks (I have an understanding employer and qualified for protected sick leave). I went back to my naturopath, who I knew would take me seriously. She ordered a variety of tests that my general practitioner had not. We learned that I was very low on vitamin D and iron, so we added supplements. My hormone levels were still not quite right, so we bumped up my estrogen and progesterone. A test for Lyme disease came back negative, but a variety of tests for reactivated Epstein-Barr virus came back positive. My complete blood count was also not normal, and at first she thought I might have cancer, but she consulted with an oncologist who said I didn’t, but that my blood count did indicate the presence of a virus. So, one of my issues was that I had a case of reactivated Epstein-Barr virus. I knew nothing about it, but was thrilled to know that there was something I could pin my strange symptoms to, at least in part. We still needed to deal with my emotional health, so she referred me to a psychiatric nurse who approached her practice holistically, which was very appealing to me.
I contacted my doctor to let her know about the Epstein-Barr diagnosis. Too my surprise, she let me know that medicine didn’t really “believe” in reactivated viruses (huh? what is shingles then?) and that there wasn’t really anything that could be done. I felt so blown off by a doctor I had been seeing for about a decade, and also a bit stunned that a medical issue could somehow be deemed a belief (at the time, I was quite naïve about Western medicine). I got the feeling she thought I was just an anxious, troublesome, emotional patient. But at least I was a patient who finally had one answer to what was going on with her body.