When I talk about my anxiety disorder, I leave a lot of stuff out. And I recently realized I was doing a disservice to all the mentally ill people that I love and support and all the people who aren’t mentally ill who love someone who is. I have generalized panic/anxiety disorder. This means I’m often irrationally anxious over things. I’ve been dealing with it for 23 years now. Sometimes it gets a little better, sometimes it is crippling, literally.
Things that make me anxious for no reason – a ringing telephone. My phone lives on vibrate simply because I can’t handle it going off all the time with news alerts, phone calls, text messages, SnapChats, weather alerts, etc. It annoys J that I won’t turn my ringer on, ever, but that’s because he doesn’t understand. And I get it. There are mental illnesses that even as someone who is mentally ill, I don’t understand.
Other things that make me anxious: the sound of the wind, falling asleep, knowing I’m going to dream when I sleep, large groups of people, doing something new, going somewhere new for the first time, meeting someone knew for the first time, publishing a book, talking to my pain management doctor about changing some of my meds, beyond the Ketamine change. Life, life makes me anxious. And any of these things can cause me to have a panic attack. But there are a few on this list that are not normally found in generalized panic/anxiety disorder.
When I was 18, I went through a period of time when I slept in hour or two hour chunks of time due to my anxiety. I’m a lucid dreamer and it’s hard to tell my dreams from reality, even after I have woken up, and I have Exploding Head Syndrome with auditory hallucinations when I am very stressed out. I know a bunch of people just said “what the fuck is Exploding Head Syndrome?” When I am very anxious, I hear what sounds like explosions in my head, usually when I’m trying to fall asleep. Sometimes the explosions are quiet enough they sound like gunshots, sometimes they sound like cannons, sometimes they sound like the neighbors house has exploded. The sound is loud enough, I will jump, and it will startle me into being fully awake if I was on the verge of falling asleep. Thankfully, my Exploding Head Syndrome symptoms are usually confined to when I am falling asleep. To accompany this, when I’m very stressed, usually as I fall asleep, I hear a man with a very deep voice call my name. Deeper than James Earl Jones even. And while I “hear” it, I also imagine I “feel” it, as if it were on the same frequency as a roar from a big cat.
Oh and I have nightmares, a lot of nightmares. And before you start telling me to lower my caffeine intake and stop watching/reading so much horror. I’ve done those things in the past without any change in symptoms.
I’m afraid of sleep, no, not just afraid, phobic of it. I have a phobia of dreaming. Since being taken off my Clonazepam in February, I have started drugging myself with Benadryl or Tylenol PM at night. Because both of these cut down on the number of dreams I remember from the night, and they help me not wake up because of a nightmare. Which is what my clonazepam did for me. On it, I might remember three or four dreams a week. I remember more than that on the OTC drugs, but any decrease is good. And when I do have several nights of dreaming that I remember, my body causes panic attacks when I enter that almost asleep stage to wake me up.
Sleep phobia, Exploding Head Syndrome, auditory hallucinations, and the panic attacks when I am nearly asleep, these things are not common with Generalized Panic/Anxiety Disorder. These symptoms are more consistent with Post Traumatic Stress Syndrome than generalized anxiety/panic disorder. My psychiatrist in the 1990s told me this as we embarked on the quest to find medication that worked for me. 3 months and 11 medications later, all of which made me crazier than I already was, and we settled on Clonazepam. Clonazepam (Klonopin) is actually really good at treating PTSS as well as generalized anxiety/panic disorder. Considering I don’t handle medications that mess with my brain very well, it was a good choice and fit for me. And I used it as prescribed for 19 1/2 years.
In February 2018, I was given a choice, treat my pain or treat my anxiety. Clonazepam can cause you to metabolize hydrocodone exceptionally fast, which is why I was only getting a half hour to an hour and a half of relief from the medication. And here’s the really fucked up part, the Brand name Vicodin was more effective than the generic Hydrocodone. Brand name Norco is not as effective as Brand name Vicodin when I was taking Clonazepam.
Now, I still think I metabolize hydrocodone too fast and I still need to get the test to prove it. But symptoms of Exploding Head Syndrome have returned. As have my panic attacks. I’m not sure I want to go back through the trial phase of medications to see if they help. At one point I nearly had a psychotic break in the first set of trial and error anxiety treatments.
Where I failed to help my fellow sufferers of anxiety: I have never mentioned that my generalized anxiety/panic disorder has elements consistent with PTSS (formerly PTSD). I’ve never mentioned Exploding Head Syndrome, which is rare, but more likely to happen in people with severe depression and severe anxiety. And I’ve never mentioned the auditory hallucinations which again are rare, but can affect anyone with severe depression or anxiety.
For the record, my first psychiatrist was amazing. He and I discussed whether to list my anxiety as generalized anxiety/panic disorder on my medical charts or whether to list it as Post Traumatic Stress Syndrome. In the 1990s, it was rare for anyone but a combat veteran to be labeled with PTSD and for the sake of not being treated like I was a fruit loop for the rest of my life, we went with Generalized Panic/Anxiety Disorder.
But I am a fruit loop. And my anxiety is not generalized. I no longer mind people thinking I’m crazy. I am. I often consider walking into mental health facilities and asking them to hold me for 72 hours and please oh please make the dreams stop, make me stop worrying that if I leave my house, it’s going to burn to the ground or get hit by a meteorite, or that I’m going to be burgled. Or any one of a million scenarios in which seriously bad shit happens. J tells me not to think about them. Which is all well and good for him, but I can’t stop my brain from thinking about them. I can’t just magically turn it off. If I could, I would sleep better.
I also know that at least a dozen of you thought “why would she have PTSD?” My psychiatrist and I went through my memories looking for a cause and found several possible triggers for PTSD. We’ll start with my first memory, ever. But before we do, I want everyone to realize I love my parents very much, they aren’t perfect people and at the time of my first memory, my father was a heavy alcoholic who drank nearly his entire paycheck every week.
My first memory ever, I was maybe 3, maybe 4. My father was not abusive towards me or my sister. And he was an emotional, crying drunk (sorry dad). It was evening and my father wanted to go out drinking. It had been a bad day for him, he’d been required to be a father and take care of me and my sister. I had a fascination with taking things apart. I got hold of a case knife (a butter knife) and managed to take the oven door off, because my father was drinking in the living room, not paying as much attention to me as he probably should have been… for the record, in the 1980s, when a father took charge of the children for a while, he was said to be babysitting. My dad was not a good babysitter. And my father could not get the oven door back together or on, oh and I didn’t just remove it from the stove, I dissembled it once it was off. He had to wait for my mom. An argument ensued. My parents fought, but for some reason that night, the fight was different. Maybe I expected my already drunk father and my totally sober mother to beat the crap out of me (for the record neither of my parents ever beat the crap out of me) and despite the problems, I grew up in a house where I knew I was loved. Anyway, during the fight, I crawled behind the couch and hid. My mom wasn’t mad at me, she was mad at my dad, because everyone was aware I did this kind of shit, I had dissembled a half dozen tricycles and my sister’s brand new 10-speed by this time along with other stuff. My psychiatrist told me that since that was my first real memory with detail from my childhood (there were others much later), it may have left an emotional scar. My mother did eventually get the oven door put back together and on the stove. But I refused to come out from my hiding spot and actually fell asleep back there for a while.
Moving forward, I was 7 when I was sexually abused by my 16 year old step sister. I point out her age, because she was definitely old enough to know what she was doing was wrong. As an adult, I can say that I believe she was probably molested or sexually abused as a child if she was an abuser at 16. I don’t have a lot of memories of the abuse. I actually don’t remember being 7 hardly at all. I don’t even remember what teacher I had in school. It’s not uncommon for people who have been sexually assaulted or abused to have gaps in their memory. And while I had never fully forgotten that I was sexually abused by my step sister, it took my psychiatrist realizing that I had a huge memory gap before I would talk to him about it. The sexual abuse is another possible source of my anxiety disorder.
Move forward another year and I knew of a kid my age that had been murdered. Thankfully I didn’t have the details at the time, I just knew that my father who had been in AA for a while by then, told my step mother about it, she was the daughter of a friend of his in the program. The little girl had been abducted right out of her front yard. And I learned that her abductor had sexually assaulted her before killing her. It was hard for me not to connect her to my own experience with my step sister who had once told me if I didn’t do what she said, she’d have her friend kidnap me, assault me, and kill me.
So there’s another possible trigger. I didn’t tell either of my parents about the abuse. I was scared. I was ashamed. I felt guilty. And I felt it must have been my fault. I refused to go to my father’s anymore after that. I would have a full on meltdown when they would try to make me. The only thing I ever told my parents was that my step sister was mean to me. And after learning my step sister was being mean to me, which my mother assumed was kicking, biting, hitting, because I did occasionally have bruises I couldn’t explain, she stopped making me go.
I was 11 when I accidentally overhead my dad on the phone with the grandparent of the murdered girl. He was his sponsor in AA. She had been raped, beaten, and then hung from a tree with barbed wire and that hanging was what killed her. Mark that down as a possible trigger.
Oh and my real sister who is also mentally ill, had let her friends torment me when I was very little, one of them sat on me and forced me to watch a Nightmare on Elm Street, I was younger than 5, because when I was 5 we moved to an apartment and my sister moved in with the family of a friend of hers. Another possible trigger for PTSD.
Or it could have been all of it together that triggered PTSD. This post has gotten very long. However, all of this information must be included if one is to understand why I am mentally ill and how I have not been faithful to the concept of helping change the perception of people with mental illness.
And while my mental illness was triggered by external factors, my psychiatrist told me that I probably had been destined to have generalized panic/anxiety disorder, even if these things hadn’t happened, because worrying about things like meteorites hitting your house if you leave, belongs more in the generalized anxiety/panic disorder than PTSD. Even if my life had been absolutely perfect with no emotional traumas beyond the norms of childhood, I would still need to be medicated for an anxiety disorder.
I referred earlier to my anxiety being crippling at times. What does that mean, how can anxiety cripple someone? There are times when it hurts to breathe I am so stressed out. And it gets much worse if I am supposed to mail something. I don’t know why the mail triggers me to be anxious, but it does. My editor is waiting on me to send her some Scentsy Car Bars. Every time I try to put them in an envelop to mail out to her, I feel like all the oxygen is being sucked out of the room. I even see spots before my eyes and feel faint. It’s stupid and I know it’s stupid. It’s just mailing something, but even though I know it’s ridiculous, I can’t stop my brain from working itself into near hysterics over it. I have a postal scale and still worry I’ll get the amount needed to mail said envelope wrong. I worry my terrible handwriting will result in it getting delivered to the wrong place. I worry the bars will break in transit. I worry I’ll put them in the wrong type/size envelope and they’ll break a machine at the post office. I worry the package will tear open and she’ll end up getting an empty envelop because the stuff fell out after it was torn.
All of this nonsense filters into my brain every second, of every day, and mediation only helps a little, because I am phobic that if I manage to stop thinking, I won’t be able to start again. This has gotten much worse since I started on Lyrica. And I’m afraid of being bored, because if I’m not putting information into my brain, then I am left alone to think about things like meteorites hitting my house.
And a side effect of the PTSD is that I can be very distant. And sometimes, I struggle with feeling emotionally dead. Surprisingly, writing helps. It’s why I write. I don’t fill my characters with my mental struggles, I am trying to escape those problems. For a short time, I can be those characters instead of being me. And even “being” the emotionally stunted Aislinn Cain is usually better than being me.
If you want more information on Exploding Head Syndrome, I’ve linked to WebMd for it because I couldn’t find it on the Mayo Clinic site. Because much like CRPS, you’ve probably never heard of it.