I’ve had a rough two weeks. My withdrawal symptoms progressed to the point of barely functioning. A week ago we were in bed watching a show and I commented that I felt really weird. I snuggled into my husband’s side and tried to rest my eyes for a bit, to try and shake whatever the “weird feeling” was. My memories get a bit fuzzy after that. I remember starting to have involuntary movements while I leaned against his side and as the intensity increased I ended up nearly laying across him. This odd sensation seemed to pour over my head – like a cool waterfall of electric tingles that went through my entire body. It began to feel as if I had some G-forces pushing my head back into the bed and I began to struggle to move by choice. I then began to feel a tightening in the back of my head, where the neck meets the skull, as if someone had reached in, grasped the nerves and spinal cord, and started pulling.
I can’t clearly remember some of this, but as the pulling feeling worsened the involuntary movements increased until I was nearly thrashing about. And then all of a sudden my entire body was racked in waves of convulsion. I couldn’t open my eyes, barely able to form words, and he tried to hold my head to stop the thrashing of it, back and forth. I remember hearing a noise, unlike anything I had ever heard, and it took a bit to realize it was coming from me. Then the movements started to come right on top of one another. One of the scariest parts was that I was alert but trapped inside my body. I was trying to cry out that I was still there, still awake but out of control, and he held me tight to help reduce the movements. After a bit of this I was finally able to force a few words out to say I was conscious but couldn’t stop my body. He called a medical friend and asked if this was part of the withdrawal or what it could be, because the movements progressed until it seemed like I was having grand mal seizures almost nonstop. It was decided that this was definitely not normal and he called 911. I remember that I was able to identify that the pulling feeling in the back of my head would increase and trigger a round of severe movements, and was able to moan out that it was coming. I was in so much pain and absolutely terrified.
I worked in a neurology office for years, and I love to learn, so I had studied anything I could get my hands on related to the field, and had watched videos showing the different types of seizures. I knew that I shouldn’t be aware during convulsions, so I knew I was in trouble but didn’t know what was happening to me.
The firefighters arrived first and then the ambulance. I remember voices and my husband telling them about the withdrawals, showing my medication journal, and trying to follow instructions. I must have stopped long enough to say that I had been on a volunteer department and understood the chair that they were going to strap me into. The convulsions intensified as I tried to move. My memories are pretty spotty after I was strapped into the chair. I remember crossing my arms and them being strapped against me as my body thrashed about, and I mumbled random things. I was unable to open my eyes for some time, so everything seemed to be in slow motion except for the convulsions. They carried me, strapped in the chair, down the stairs to the main floor, and then started to take me outside. It felt like they carried me for an hour out in the hot sun and I kept trying really hard to respond to questions, but it was like I was screaming inside of my head with barely anything coming out of my mouth. I vaguely remember being transferred to a gurney and raised into the ambulance. There seemed to be a dozen different voices talking all around and to me.
And then we were on our way to the hospital. I don’t know what happened to help calm the movements enough to have some breaks and be able to push out more than a single word, but at some point during the ride I relayed my situation, my med list, and what I felt as a convulsion was about to start. The monitor scared me because the alarm was sounding each time it read my blood pressure. I was 177 over 100-something. I don’t remember arriving at the hospital, but I do remember being able to open my eyes as we were about to enter the building. I couldn’t move my head without triggering a convulsion and was back to barely forming a word. My mind was going a mile a minute yet somehow not always present in the situation. I had a long group of convulsions as they were being triaged because the hospital didn’t expect us yet. I understood that they weren’t prepared yet, that they scrambled to get attendees to a room, and I very vaguely remember the bright glow of the lights in the room they wheeled me into. I remember them saying they needed me to try my hardest to not move as they transferred me to the hospital bed.
I remember feeling like I was in a hammock being lifted and then I blanked out for a bit. Once I was able to open my eyes again slightly, I realized that the “hammock” was the blue bag from the ambulance gurney and it was enclosing me like a full body shower cap. That seemed absurdly funny right then. I have no idea why. And I then remember faces popping into view and blocking out the ceiling lights. The rails were lifted at my sides and I remember gripping them as hard as I could to try and stop the convulsions as they came. In between bouts I was able to tell them what was going on, but it was just a few words at a time, and I got frustrated while feeling their frustration too. I also noticed that my fingertips hurt from them testing my glucose a few times and my elbow had an iv port in it. Dude, that was a seriously talented EMS worker to have managed that. I was just getting better at speaking and keeping my eyes open, notifying when I could feel that bunching feeling in the base of my skull, when I saw my husband in the doorway.
Thankfully he had my meds, my phone, everything with him, and he was able to recount everything that has happened in the past 7 or something weeks (I’m still struggling with being able to recall many of the details through most of the withdrawal process). I logically know I was lucid for a good part of the time I was in that room, but I’m honestly not sure how much is what I remember and what my brain made up to fill in the gaps. I remember that I still couldn’t move anything except my eyes and sometimes my fingers. I could slide my hand along a surface, like when I gripped the bed rail during episodes, but I couldn’t lift anything. I couldn’t even wipe the hair away from my mouth and eye, or even shove the elastic area of the transfer bag off of me. It had pulled in on itself and I felt like a pea enclosed in a pod with a sliver of my body exposed. I remember him moving my hair out of my face, holding my hand, and soothing me. I also remember asking repeatedly what could be happening since I was alert during the convulsions, so seizing didn’t make sense to me.
They drew blood and then wanted a culture. I can’t even remember getting into a wheelchair to get wheeled to the restroom to provide the sample to culture. I remember trying really hard to control my movements as we went down the hall, and then I remember having a bout of movements at the sink. I have an image burned into my mind – the reflection showing me how the movements looked as I held onto the sink and how incredibly sick I looked. The nurse came in to help me get into the chair and I don’t really remember much of our trek back to the room. I remember her saying how incredible my husband and I were with one another, and how attentive he was, but I don’t even remember getting back in the bed.
At some point an intimidating Hospitalist came in and we recounted everything again. It was hard for anyone to believe I hadn’t had a recreational overdose, and they were floored to find out that I had been prescribed Clonazepam for so long and that the doctor was completely unavailable, or that I was left to go pretty much cold turkey off of the benzo. One of the workers (not sure if it was the EMS, nurse, or one of the doctors) admitted that she had never heard of someone being prescribed it for long or of a doctor saying it would be a lifelong medication. I think at this point they pushed some saline and Benadryl through the IV port. As long as I didn’t move the convulsions seldom occurred then.
I remember a second doctor coming in, saying that he thought I had a toxic amount of the Hydroxyzine antihistamine that I had been taking for the past two weeks, and that they were going to keep me overnight. It turns out that it wasn’t a good choice of medication to help with withdrawal symptoms. He confirmed that I hadn’t been having seizures and one of the attendees said I had dystonic movements with pyramidal symptoms. Finally someone said it was like the prescription equivalent of alcoholic DTs.
There was a really long trek to my assigned room and I had to keep my eyes closed most of the time, because the lights and movements made that bunching feeling in my neck build a bit. It turns out that they had wheeled me into another wing of the hospital until we finally ended up in a room in what someone said was the ICU. I remember it being very difficult and scary to move into a wheelchair outside of the room, although the nurse was so incredibly soothing. She took me straight to the restroom so I wouldn’t have to move again for a while once I was in the bed. Her quick reflexes saved me from banging my head into the metal handrail and from falling. I can’t clearly remember getting into the bed although I slightly remember her putting the hospital down on me. My next memory is of an IV beside the bed and rails up with cushioning along most of my body. At some point they had given me another dose of Benadryl and everyone seemed surprised I was awake. I was awake but my mind was like Swiss cheese.
I remember worrying about my husband’s arm hurting from keeping it bent over the rail of each bed, holding my hand. And I remember feeling like I couldn’t say “I love you” enough, although I couldn’t tell you if I even managed to say the right words most of the time. Then the nurse brought in a boxed meal because I had been in the other part of the hospital a long time and it was beyond dinner hours. It took some really slow adjustments to be able to sit up enough to try to eat (for a long time it felt more comfortable to be flat when the convulsions hit, plus changing position would trigger at least some involuntary movements). It was incredibly difficult to chew and I got really sick to my stomach just eating a little bit of the turkey lunch meat, so they gave me some nausea medicine. We also realized that some of my nausea is because of some weird thing that occurred to me years ago as my Fibro progressed; I can’t drink straight water. It’s unhealthy as can be, but the main drink that my body tolerates is pop. Most other things, especially water, causes me to toss cookies. So lemon lime pop to the rescue.
The poor guy looked so exhausted, and I knew he had to be starving, so I asked my husband to go home for the night. No sense in sleeping on the little foldout couch that was in my room. After he left the nurse gave me Ativan and continued to check my blood pressure every half hour or so. I was given something for the hypertension and then another when the BP continued to trigger the alarm. At some point she got me settled down to try to sleep, but my body had other plans. And then the universe did. The alarm on my IV pump went off a lot due to a false reading that there was an occlusion. I think that went on for an hour or so. I remember dazing out to PBS throughout the pump issues, until she decided to switch pumps and my IV began to run smoothly again. That’s when the fire alarm started going off. She came in to assure me that someone probably burned something in the microwave or something, so not to worry. It went quiet and then a minute or so later lights and alarms were going again. She told me she was going to shut my door per protocol, but would be right back to evacuate me if it turned out to be a real alarm. After a bit the hubbub died down and as the next show came on the alarms and lights went off again. I must have finally fallen asleep for a brief bit because the next thing I remember is waking to my BP and Pulse Ox being performed. I was considered high risk for falling and the amazing little gal managed to get me into the wheelchair and helped me take care of necessities, and had to bear the brunt of my body to get me back in bed as the movements became intense again (not like the earlier ones though, thankfully).
I barely remember the first morning in the hospital. I remember seeing my husband come in and being so relieved. I hated that my health caused him to call in to work, but I’m simply not as scared when he’s nearby. My mom later came to the hospital and he wheeled her up to my room (she has her own health issues kicking her hard right now), and we visited for a bit before she got too worn out. I think that sometimes I straight up zoned out, because I didn’t feel like I slept, although neither commented that I had, but I was definitely not alert and only remember bits. I also remember getting an anticoagulant shot in my stomach and it hurt like a #%^! At some point they also turned on the alarm on my bed to alert them if I fell out of bed or tried to get up by myself. That’s particularly annoying when you don’t feel well and want to go to the bathroom by yourself, especially since there were other patients being cared for, so sometimes there was a wait. Plus we all know I have a stubborn streak when it comes to being told that I can’t do something. 🙂
That day a new doctor made rounds and called in for a psych consult along with PT and Occ Therapy. The Psychiatrist was phenomenal. He asked questions that nobody else ever asked and even discussed my ideation in such a casual way that it didn’t feel like some bad secret. He truly understood that it was there and that I didn’t want to carry it out, and that I am the happiest I’ve ever been, so it doesn’t make sense that I had ideation again. It turns out that the Clonazepam had helped it, but I had done a lot of work mentally too; however, nothing was strong enough to override the invasive thoughts when my brain was having a hard time healing from the Clonazepam’s destruction. The doctor decided that the safest thing was to put me back on a low dose of Clonazepam, never touch Hydroxyzine again since I’m apparently very sensitive to it, and allow my body to recover. Over the course of 6 months to a year whichever doctor takes over my care will slowly taper it out of my system and prevent any withdrawal.
I remember a sense of peace when he sat in the bed with me before leaving for the night and we just held one another. It sounds like a dime romance, but it truly was like time stood still and it was just the two of us in the whole place. So incredibly peaceful when I felt so broken. And I had hope again.
The two Therapists came in and started going over my normal physical limitations and what worsened with the withdrawal process. We worked at my standing up and holding onto a walker, and then doing a couple of steps sideways, back and forth. It was exhausting and I remember trembling once I sat back down on the edge of the bed. We went over some stretches and strengthening exercises I could safely do in bed and for the first few weeks of my being back home.
That night I actually slept. I slept better than I had in almost two months. And I fell back asleep every time the nurses left from taking readings, changing IV, or dispensing meds. For years I’ve been unable to fall back asleep if I’m awake for more than a few moments, so it was absolutely amazing. I even woke with an appetite! At this point they had given me two or three doses of Clonazepam, the BP medication, a few doses of Tramadol (the spasming irritated my Fibro), and several doses of Tylenol (for the headache and tightness in the back of my head).
The Psychiatrist rounded again and we discussed things; he provided the name of a clinic in a city nearby that I can go to if I’m ever in need of mental health treatment or medication refills, so I’m never in this situation again. We’re actively working to get me in somewhere for a consult, but at least there’s a safety net now.
A new set of nurses were assigned to my area and one (the most amazing nurse I have ever met and would love to even sit and chat outside of a medical setting, he was so awesome) let me set the pace and test my progress. I had done as many stretches and gentle movements as I can handle the night before, so I was feeling kind of eager to see what I could handle. When he gave me the cup of morning meds I didn’t have a single wild movement while taking them. And instead of automatically bringing over the wheelchair, he let me decide what I wanted to do, and I got to slowly stand up without assistance, brace myself on the walker, and shuffled to the restroom with him pulling my IV behind. I even got to have the door closed. Privacy is seriously taken for granted. He had to caution me to slow down when I came out and went to wash up and get back to bed. He was ready to grab the strap around my waist that was to help hold and catch me without injuring my arm or such, but I was able to get back in bed with the slightest bobbing about. He even let me walk with the walker a bit more later.
When the Therapists made their round they were so excited to see how eager I was. One followed with the wheelchair just in case plus my IV pole, and the PT kept a hold of my waist strap, but I actually walked 600 feet around the unit! I had to power nap after that, but they both felt I was doing so well, and so dedicated to the recovery process, that they were comfortable giving their okay to the Internal Med doctor to discharge me.
I had convinced my husband to not take the second day off, so when he got to the hospital it was awesome. I was sitting up in bed, able to talk almost completely rationally, had packed up my little bag of things, and was waiting for the Internal Med doctor to sign the discharge. I had managed to eat a small yet complete breakfast and the headache was gone. Even my overall pain had improved. One nurse removed my IV, which had gotten painful by then, and I also stopped having so many hot and cold spells. My room had a big window and I remember that it was so beautiful as I changed out of the hospital gown. Then I was being wheeled to the entrance by my most awesome nurse and the two guys helped get me into the car.
In the couple of days post discharge I’m still struggling with my memory. I’m able to actively participate in conversation, walk via walker to the restroom and back without any involuntary movements, and do some walking with my cane. I don’t use the cane unless my husband is beside me, just in case, but I was able to do a good little walk before my legs went to jelly and I was exhausted. I have also taken a shower by myself using a bath stool. That’s something we definitely take for granted. I feel pretty good all things considering, other than being super tired and sleeping quite a bit for me. Sometimes everything is a bit wonky, but I know I need to heal from the past 7+ weeks, plus the strain from the compulsive movements.
It’s kind of sad that I went through such a dark and difficult time to end up being back on the Clonazepam. I’m now absolutely convinced I would have died without being put back on it. I’m struggling with the anger I have for being on this medication, for literally putting my life in danger, and for the withdrawal situation happening in a negligent manner. I’m really angry that I missed almost all of summer break with Little Man, missed a scholarship award ceremony for the College Bound, and getting to have “girl outings” with my mom like we did years back. Fibro has taken enough away from me. No prescription should take more of your life away.