Dear Potential Neurosurgeon,
I wish I'd have kept a comprehensive sleep and symptom journal from the onset, but in the beginning I had no idea how long this would last or how bad this would get. And once I recognized the severity of my insomnia and myriad other symptoms, I was too physically and emotionally drained to do much more than baseline human functioning. So this is my best recollection of what happened. I hope that my account can shed some light on what is going on and help us find the root cause and best treatment option.
On June 23, 2016 I filled an ambien prescription. This was after several months of trying to combat my insomnia with melatonin. I started with 5 mgs, but after several weeks went to 10 and finally 15 mgs, which I believe is higher than the highest recommended dose. Needless to day the melatonin wasn't cutting it. I wasn't eager to get a prescription sleep aid, but I was becoming increasingly desperate. It was taking me 3 to 5 hours to fall asleep, and then I'd have to be up 3 or 4 hours later with my 1 year old. I kept thinking the exhaustion would finally become so great that my body would have no choice but to shut down and start getting adequate rest again. That never happened, so I went to my doctor for the ambien. Initially I planned to use it for a couple days to get my sleep back on track and then only on really bad nights. It became clear very quickly that every night was a bad night, so I took the drug each night. I'd like to mention that the prescribing doctor told be that the script was for a 5 mg dosage, and though I'm generally very thorough and conscientious with my medication I was so sleep deprived that I didn't notice for over 3 weeks that he had given me a 10 mg dose. So right off the bat I was taking 10 mg, and into the third week when my insomnia persisted I decided to double up 3 or 4 times, taking what I thought was a 10 mg dosage, coming to find a couple of days later that I had mistakenly been taking 20 mg. I felt angry with the doctor and with myself for not being more observant. I found a different primary doctor who changed my dosage to 5 mgs, as is the recommended dose for females. It worked, more or less, for a couple of months. But my anxiety was mounting exponentially and for no reason I could figure out. In the past several months I've had at least 4 trips to the ER for what they determined were panic attacks. One time I even called the ambulance to come get me because I was shaking so badly I couldn't walk and when I tested my blood pressure it was 155/100 (it's generally on the low side), and my pulse was over 150. The verdict, as ever, was: panic attack. I was turning into the annoying, dramatic hypochondriac that my local ER would patronizingly attend to while suggesting a visit to in-patient psych. I understand and believe that mental illness is a real thing. But the sudden and rapidly escalating severity of my insomnia coupled with various other symptoms that also came on inexplicably led me to believe that there was an underlying physiological problem that required addressing. At the time I felt it likely had to do with some dysfunction of my autonomic nervous system. My blood pressure was fluctuating a great deal and my resting pulse was consistently high. My temperature regulation was all over the board. I was constantly thirsty and constantly urinating--at least twice an hour. I also knew that a lot of people with my condition (Ehlers-Danlos Syndrome) often suffer from some version of Dysautonomia. So I went about scheduling autonomic testing. I also got a referral for a sleep study. I also got my cardiologist to order a 48 hour holter monitor. The autonomic testing came back normal, although I've yet to meet with the specialist who to read my results. My sleep study basically said that I have a difficult time reaching and maintaining REM sleep (Duh.); no recommendations were offered. My holter monitor indicated a smattering of palpitations--"nothing to be worried about." My primary physician ran various tests--electrolyte levels, hormone panel, thyroid etc. They came back normal. I thought maybe I'd become hyperthyroid again and it might be an easy fix. No such luck. One would think a person would be overjoyed to get such a clean bill of health, and I would have been had I been able to sleep more than zero to three hours a night without being drugged. And if my panic attacks weren't happening with increasing frequency and intensity, and if the alternating tinnitus and loud heartbeat sounds in my left ear weren't getting louder, and if the feeling like I'm underwater sensation in both ears was beginning to remit, and if the pressure in my head and the pain at the base of my skull and in my neck wasn't getting worse, and if the auras I was seeing around objects when the pain and pressure in my eyes was particularly bad was going away, and if my hands stopped falling asleep several times a night forcing me to shake them back to life before trying to sleep again (I've since started wrapping them and this one symptom has improved--likely EDS related), and if portions of songs didn't get stuck in my head for days, blaring particularly loudly at night when it was time to sleep and sometimes waking me from my sleep and often waiting to torment me right as I woke for the day, making me wonder if maybe I was becoming schizophrenic, and if my sinuses weren't alternately throbbing or numb-feeling, and if on nights when I was miraculously not feeling anxious and was sure my exhaustion would usher me to a natural night's sleep--if on those nights I didn't fall asleep for 30-45 minutes only to wake with a surge of adrenaline than caused my heart to race for 15-20 minutes before I'd fall asleep again, only to wake with the same experience again and again and again so that there seemed no choice but to take the sleeping pill and sometimes anxiety pill, as well. If that had been the case I would naturally have been thrilled to have all my test results come back normal.
There was a period of time, I believe in August or September, when I thought the problem must be the ambien, and I decided to stop taking it. When I went off the 5 mg cold turkey I had horrible "rebound insomnia" and didn't sleep a wink for two nights, and then only slept 1-4 hours for the next 2-3 weeks. I had only been taking .5 mg of Lorazapam 1-2 times per week, so discontinuing that wasn't too tough. The only thing I learned from this ambien detox was what I should have known to begin with---I came to ambien because of crippling, debilitating insomnia that every single natural remedy on the market and every sleep hygiene tactic did nothing to combat. I wasn't a drug-seeking addict; there was something wrong with my brain &/or body, and I needed help. At this point my sleep deprivation was so severe that my anxiety and depression had given way to suicidal ideation. I resigned myself to the doctor's mantra of choice- "It's all in your head" and began an Intensive Outpatient Program, hoping to have ready access to a psychiatrist who could diagnose and treat my insomnia, and the anxiety and depression it was causing or at the very least, exacerbating. The drug my psychiatrist started me on-- an anti-depressant called Remeron (15mg) wasn't working or wasn't working fast enough and I feared I'd take my life for the lack of sleep, so I was transferred into in-patient psych where I spent 5 of the most hellish and damaging days and nights of my life. My psychiatrist added Seroquel to my regimen (peaking at 200mg if I'm not mistaken). This drug is an antipsychotic known induce sleep. In my case neither the Remeron, nor the Seroquel did anything to help me sleep. I'd lay awake in a sleepless trance and then stare or cry in a drugged state during the day. I went off Seroquel within one week and felt more human. I gave Remeron a full 2 months to do anything, but it failed to impact my sleep or my mood in anyway, so I weaned off and discontinued it.
Prior to my in-patient stint I saw a naturopathic doctor who ordered some neurotransmitter testing (a urine test), which supposedly indicated that my GABA was very low, my serotonin was on the low side, and my dopamine was elevated. I've done some reading that has made me a little skeptical about these test results, as the levels of neurotransmitters in our gut may or may not have anything to do with the levels in our brain. In any case, an expensive regimen of supplements was recommended to heal me. After paying for the visit itself I could only afford the supplement supposedly specific to sleep. The supplement was supposed to help with GABA support. It was called Kavinace Ultra PM. For 5 miraculous nights I slept on this supplement without ambien. I thought I was cured! I thought I'd found the answer! Then on night six the supplement had the opposite effect--it made me racy and anxious. The naturopath recommended I try regular Kavinace and I obliged. It gave me 2-3 nights of decent sleep and then also stopped being effective.
My current regimen seems like something one would use to put down a horse versus what a 135 pound health-conscious girl should need to take to get 5-6 hours of drug-addled sleep each night:
10 mg ambien, 1 mg clonazepam, 200 mg L-theanine, 3-5 mg melatonin, magnesium, and the occasional Kavinace Ultra PM peppered in for good measure.
The other alternative medicine routes I've attempted include: acupuncture, reiki, and hypnosis. I've tried listening to soothing music or guided meditation before bed. I've cut out all caffeine, although I've never really had more than a cup of green tea in the morning. I've cut out alcohol--again, not a substance I've used immoderately in several years. And on the rare evening I've tried to have a beer or two to relax it has made my anxiety and insomnia even worse.
So now I've been informed that I have a 4mm colloid cyst in my brain. And while most people might be terrified at the prospect of brain surgery, I'm terrified that I'll be told I don't need surgery, that my insomnia and anxiety and headaches and tinnitus and all the rest have nothing to do with the cyst.
When I learned of my Ehler's Danlos diagnosis--a diagnosis I reached through my own research after every doctor dubbed me a hypochondriac; a diagnosis I eventually had confirmed from a geneticist specializing in connective tissue disorders (still waiting on my honorary doctorate from Harvard Medical!), I was saddened, but deeply relieved. I understood that there was no cure for my condition, and that it would worsen over time. But I dug in and did what I needed to do to manage it and make my quality of life the best it could be. I found a Physical Therapist who was familiar with the condition and I attended PT religiously. I got the various joint braces and compression wear I needed to help me manage during flare-ups. I learned taping techniques to keep me glued together. I learned how to pop some of my own joints back into place. I continued to work on strengthening my muscles and bettering my proprioception through PT exercises and exercise in the pool. I almost never took pain medication stronger than aspirin, knowing I'd likely need it for later in life. Instead I strove to eat a healthy, anti-inflammatory, predominantly organic diet and to take things like Tumeric, Glucosamine-Chondrotin, Quercetin, and Bromelain to help manage my symptoms and pain. I was infinitely proactive about my health in the face of a condition that couldn't be cured.
Now I feel like nothing I do for my insomnia, anxiety, and headaches has helped or is helping. I feel like I've been dismissed by every specialist and left to fend for myself. I've been given drugs that are undeniably addictive and that I will, in time, build up a tolerance to. And then what?
My only lead is the colloid cyst. If that isn't the culprit, or if it's only part of the story, can we please work together to find out what is wrong and how to treat it?
I have everything to live for, not the least of which is a sweet, hilarious, and beautiful 2 year old son. I don't want him to have a mom who is perpetually exhausted, anxious, crying, and in significant pain. I don't want him to have a mom who fantasizes about death because life has become a waking nightmare and her sleep-deprived brain believes that maybe everyone would be better off without such a hopeless train wreck in their lives. I genuinely want to get better. If brain surgery is the answer, I'm all-in. If there are other things we can explore, I'm ready.
Please take the time to figure this out. I, like every patient you have and every human on earth, am worth it.
Thank you.