Story time! and it’s a long one….
Well I can’t sleep. I’ve been completely out of whack for nearly a week now, so I may as well get this all down.
Let me preface this by saying, it should never have gotten this bad… or rather, it should have never been this complicated.
Cause I’m Free….. Free Falling….
Before Christmas, Dean’s first day off for holiday vacation time, he stirred in bed around 6:30 am. I pushed myself upright to reposition and with a quick jolt of my head, I was falling off the top of a building. I didn’t know where I was, but I was free falling and spinning downward. I could not make out my surroundings, my brain was liquid, and I was going to……. hurl.
Wait, is this…….. vertigo? It can’t be. Can it? Vertigo should not be this bad!
I used to transcribe medical records for different specialties including otolaryngology (Ear Nose Throat). I knew about vertigo. I also knew that it affects people differently. When I now say I experienced vertigo, many reply “oh yeah, I have had that.” quite nonchalantly. I don’t doubt that you have had vertigo, but have you had the type where you felt like you are dying? Cause to say it nonchalantly like that…. I just don’t understand. This was my hell. This vertigo that I had is the type that if you have your eyes open even for a split second, this is literally all you see which means you are incapacitated completely.
My father also experienced it this way strangely and to this day, there is nothing nonchalant about the way he talks about it. He thought it was his last day on earth. You cannot keep your eyes open. If you were driving and this attack came on, it would be impossible to navigate to a safe resting spot. I have a very high pain tolerance but maybe I just don’t have a tolerance for “brain swish”.
I am the Vomit Warrior
After yelling at Dean not to touch me or move the bed, I told him I would be all right (because although I have no idea what is going on, I’m a strong woman, right?)….. I was going to make my way down to the family room because… well, after I fight off this vomit feeling and not throw up because I DON’T THROW UP, I’m going to lie down and settle in quietly by myself and recoup from whatever this is.
At least, that was my plan. Planning is my thing… because I’m collected and in control…..always…. well… usually – maybe this is why this was so hard for me to take because there is no controlling this….
I reach for the walls. I cannot open my eyes. I quickly felt my way down the stairs and into the kitchen.
I’m the queen of fighting off nausea. I have spent my whole life in battle with motion sickness and I’d be mortified to throw up in front of anyone, even my own husband. I will NOT let it get me. I will defeat it. That is what I do. I am the Vomit Warrior.
Not sure exactly how I got there, I grabbed at the kitchen sink blindly, found the faucet and pulled the sprayer up and felt the cold water all down the back of my neck and shirt. Take THAT nausea! That is such a great anti-nausea trick – it even works with the lovely passing out sensation. Hurling will not happen…. but…..I was losing this battle…. NOOOOOO!!!! …. my eyes had to come open to find the powder room and toilet….. and the horrifying spinning began again.
This is not dizziness. This is not – oh, I’m on a spinning ride at the carnival and feel terribly sick. No, this is completely incapacitating. I cannot see anything but lines. My eyes cannot focus – not even for a second. My brain has failed me. The area that processes vision is gone.
I fell back onto the cold floor, halfway into the hall and called for help.
Dean arrives in a panic.
If there is a very small chance I am not dying right now, I know I need an Epley Maneuver. I ask Dean to look it up on his phone and direct me through it. It does not even occur to me that he has no idea what I am talking about. But doesn’t everyone know the most common “cure” for vertigo is an Epley Maneuver?
“Are your symptoms right sided or left sided?”
“I don’t know! Help me! I need this. I can’t… I can’t…”
I’m a warrior. I have made it through two C-sections, diastasis and hernia repair with no pain medication. I have endured impacted wisdom tooth extraction wide awake for hours. I made it through my back injury that left me unable to walk at times. I’m in great shape. I raised two kids successfully into adulthood….I can control 1,000-pound beasts! I can do this. I don’t need doctors or a hospital. I can fix this on my own and I will!
He takes my head and places it at a 45 degree angle to the left and tells me to hold it there and lie back, then says turn to the right. I did. I’m free falling again….
What came out of me, I can only say was involuntary. Dean said I was moaning in a way that he had never heard from me before. I’m having a stroke. I’m having an aneurysm. I’m going to lose consciousness. I can control nothing.
Dean calls an ambulance. I ask that he bring me a few things but I cannot communicate. I’m unable to verbalize anything properly. My ability to describe where anything is has disappeared. My brain is not working. My vocal cords are not working. My body folds and I’m back on the floor.
I hear the paramedic come in. He asks me questions. I tell him I need the Epley Maneuver. I’m not sure he knows what that is. Why doesn’t he know what that is? Why doesn’t anyone know what the Epley Maneuver is? When he finds my vitals are stable, he asks if I want to go to the hospital.
“I cannot live like this. Yes. I need help.”
I remember being assisted onto the stretcher. I remember Dean stopping them so he could gently kiss my forehead. “I will see you soon. I love you.” I love this man with all my heart. Did I tell him I loved him back? I don’t know.
I cannot open my eyes. The paramedic tries to get an IV in my right arm. I don’t care that he is poking around and cannot get a vein. All I know is he said he is going to give me Zofran which should take care of my nausea. yes please. Please. I encourage him to try my other arm and he does. Pain? Pain is so much better than free falling because pain means I’m in reality. Free-falling in some alternative universe deep inside of my brain is frankly, nothing less than torture. That may be just the way I process. I’m sure it’s not like that for everyone?
I kept my eyes tightly closed and was freezing but cold combats nausea. I was still in what I wore to bed. I have no shoes. (and of course part of me cringes – no makeup, haven’t even looked at my hair… and when was the last time I shaved my legs? last week?) The back of my shirt is soaked. The Zofran gave no relief.
Everything moved quickly in the ER. They placed all the monitors, did an EKG – no heart attack – and the doctor came in to assess. I didn’t like him. He wasn’t rude or mean. I just sensed I didn’t like him. I think it was his arrogance.
I asked for an Epley Maneuver probably four times at this point to every member of the staff that spoke with me. I was brushed off. I was given meclazine and Ativan (since I’m claustrophobic) and before I knew it, I had a cage around my head and was in the MRI; however, I kept my eyes tightly closed because I was not going to risk vomiting everywhere. I was more relaxed but also extremely dizzy. No longer free-falling, I was just dizzy and incredibly nauseous.
At some point when I was out of earshot, Dr. Arrogant told Dean that his wife got vertigo off and on and kinda shrugged it off (because women are stupid and exaggerate and your man cold is more dire of a condition, right?). Umm…. excuse me but if your wife got vertigo like this, you would understand that this was no joke, and you would not be brushing off my requests for an Epley Maneuver that could in fact make me feel that I was no longer dying. If your wife had it like this, you would want relief for her!
The MRI was normal – no stroke. Dr. Arrogant made me follow his finger with my eyes.
“Was there any nystagmus?”
He seemed surprised that I would ask such a question and said, “maybe a little at the extremes in either direction.” But Dr. Arrogant, you should know that you would see major nystagmus if you tested me during the severe bouts of spinning, or if you did a Dix Hallpike to assess, but you are telling the scribe to put in my records that there is no significant nystagmus. Why? Why doesn’t anyone know what to do for vertigo? This should be commonplace right? Why doesn’t he even do the Dix Hallpike test for vertigo? or am I thinking this way because I happened to have grabbed this bit of info in my life experiences and hyper focused and being on the spectrum, I just assume this is common knowledge just because *I* know it and I do not hold a degree in medicine, so why should I know it but no one else does? I try my best to understand how ASD clashes with “normies” and often fail. Do I know more than the doctor? This is ridiculous! Our healthcare system is truly in the toilet!
Damnit, why can you not do an Epley for me? I do not think this is an outrageous request!
He stated that I would not be leaving and that I was to be admitted. Really? If this is “just vertigo” why am I being admitted?
And that’s when the ugly panic set in.
“Why can’t we just do an Epley Maneuver – it’s not invasive and could in fact give me incredible relief?”
I know I fixated on this procedure but dang….. I pleaded in tears. No one took me serious and instead they tried to tell me that well if you are admitted, we can get an ENT or PT to come and maybe they will decide to do that, but that I can’t see an ENT or PT unless I am admitted because that’s just not how it works here. Why are you negotiating like I’m a child that wants a lollipop before dinner? I just want my eyes to stop moving involuntarily!!!!
YOU HAVE GOT TO BE KIDDING ME! Do you all just not know what an Epley is? Is that it? Why doesn’t anyone know what an Epley is or how to do it? Why is this such a ridiculous request? This should be the FIRST stage of treatment after assessing, right?
I felt the panic attack coming on, and then I hear myself moaning again….. Erynn had come to visit and I didn’t want her to see me this way… but I was free falling yet again…..
“Water… towels… I need cold water!”
Dean is handing me damp paper towels and I’m not getting through to him, I want soaking wet cold water all over my face, neck… just dump water all over me, make this feeling stop!
“Give me the bucket!”
I gave up.
“We cannot give you Zofran again because it isn’t quite time so we are going to give you compazine.”
Whatever. I don’t care. Just make this stop.
That was a mistake.
Oh holy @#$#.
I experienced steroid psychosis a few years ago while taking meds for my back injury. I’m no longer allowed to take prednisone. That still did not prepare me for compazine.
I didn’t even realize that medication-induced psychosis was a thing… oh but it is….. I have to wonder if I may be prone to this due to the fact that I am so anti-medications that I have barely taken any in comparison to normal people. I’d rather feel the pain than take the medication that messes with my brain.
I felt the medication go from the IV port up my arm to my face. It crept quickly across and covered my face.
Vertigo was bad enough… but now I was in for a new ride…..
I sucked a deep breath in. I have no idea when I let that breath out but I must have at some point or I wouldn’t be typing this. I do not remember the things I said but I remember the shock in Dean’s voice as he was convinced that I was going to be taken to the psych ward. I do not remember my words, but I will never forget feeling that I needed to get out of my skin and run…. but I couldn’t run. How could I run if I couldn’t see? I felt like I was trapped and the only way that I could get out of this trap was to rip my skin off. While I was flipping out, a tiny rational part of me that was barely clinging, knew I could not rip my skin off but was in complete and utter despair knowing that it will probably take hours until this medicine wears off so I need to be put out of misery some way, some how, and…. if someone does not put me out of this misery, I will have to do it myself. No one is helping me. They think I’m crazy. They need to feel what I’m feeling. They don’t know. They don’t understand. I have to stop this horrible feeling NOW by any means necessary…..
Someone came in with Benadryl and pushed it through the IV. I was reassured that these feelings would go away…. and then I was loopy….
They lied. I could still feel the psychosis, but I was unable to react to the horrible psychotic feelings. They shut me up. They didn’t help me. They shut me up. They gave me poison with no antidote. My voice is gone but I’m screaming inside. My control is gone. It was similar to sleep paralysis. The horrible feelings of panic were there but I was trapped inside of my head and in a body that could not function. I could not call for help. I could not get help. I could not help myself. I had to succumb to whatever this was. I shrunk down into the bed, on my side… and could barely hold myself in place. Was I drooling? I didn’t know… and didn’t care.
Questions, so many questions…. more people… more questions…… Please please just leave me alone. I heard my words but they were slurred. Dean started answering for me. In and out of consciousness….. When will this wear off? When will I be human again? Will I be human again?
Dehydrate and Poison
Some time that evening, I started coming around. I had nothing to eat or drink since the day before and not even a saline drip as apparently something to do with Puerto Rico, the hospital was not giving patients IV bags of fluid. I’m positive that did not help my body rid itself of these horrible toxins. So dehydrate your patients and load them up with powerful meds that can cause psychosis… sounds like a fantastic plan. What could go wrong?
Another doctor introduced himself. He was very kind and actually listened to me when I yet again stated, “I just really want someone to try an Epley Maneuver. Just try it! It can’t hurt anything but could give me complete relief!” He said he would get PT in to see me as soon as possible.
A few hours later, PT came in. Please, an Epley? No. Dix Hallpike. I felt like that physical therapist, although really nice and caring, was not well versed in vertigo but now it’s the nystagmus that is being discussed and marveled over. Dean could see my eyes dancing around and jumping up and down involuntarily from across the room. This is why I cannot see. My eyes were bouncing side to side and could not focus.
Here is a video of my eyes after I got home. This was after everything settled down and I was barely having symptoms in comparison to the first two days.
Who wants to see my creepy eyes. Dean said it was way worse yesterday. 😳😳😳😳 So I've been home from the hospital for a while now (best shower ever). I'm supposed to see PT again and have a consult with neuro due to the eye involvement (coupled with ocular migraines and bad sensitivity to strobing) but it's so nice to be able to function again. At any rate. Here's my new party trick. This is nystagmus and it's definitely not nearly as bad as it was but still creepy. #nystagmus #partytrick #vertigo #creepy
The rest of the evening, I was in and out of sleep. I told Dean to go home and rest as there was really nothing he could do here and I was just going to sleep. He did go home, but he came back and spent the night with me. He has been so incredibly patient throughout this whole ordeal and has gone above and beyond for me. He is truly amazing.
Barbecue Roll Out the Door
Another physical therapist visited in the morning. She performed two Lempert Maneuvers (also called Barbecue Rolls apparently), but no Epley which again, left me confused; however, this did seem to help a little. The nystagmus was still there, but I felt pretty good considering how I felt the previous night.
The PT said, “Who knew that rolling around in bed could help?” And in typical Dean fashion, “I tell her that all the time!” Yes, my poor germophobe husband still with a sense of humor after trying to float above everything and not touch anything during the whole hospital experience while we heard about how many people had the stomach flu around us….
A few hours later, I was released with instruction to see Neurology (due to some other eye issues and involvement), ENT, and physical therapy. I was also sent home with meclazine (which does nothing for me except make me sleepy).
A few more days later, the nystagmus calmed to this level and it has continued around this level…
But I’m now over a week out. I’ve had physical therapy and scheduled for more. Apparently due to my horizontal nystagmus, I have the kind of vertigo that is more difficult to resolve. Most have the type that is relieved by the Epley. Mine has a different type of maneuver. However, it still had 97% success rate after the maneuver PT has given me but it has not resolved at all. I have to tell you, I can live with the level of vertigo I’m experiencing right now. I’m incredibly dizzy but it’s not the free-falling torture at this point. It’s making my normal activities a bit tricky but I do not ever ever want to experience that free-falling crazy again. I’m just hoping that the calcification that are apparently loose in my vestibular system are going to dissolve and resolve this issue soon. Now it is livable but just an annoyance. I truly would not wish any of this on anyone but now I have a plan if this ever happens again.
And I can tell you, I have a new respect for those who have real mental conditions that are “shut up” with meds but the psychosis is still there. That is downright terrifying. To be feeling all that psychotic mess in your head but being sedated to where you have no ability to help yourself or get help. That is just horrifying.
I’m very glad to be on the road to recovery and I thank everyone who has offered their thoughts and prayers. I’m looking forward to getting rid of the rest of these symptoms and moving on with a great 2018!