What little has improved...

To keep my sanity in check, I felt the need to write down what has improved since my last dose of clonazepam, nearly 12 months ago.  My experience has been an exorcism… minus the head spinning and green vomit spewing on the walls.  I’m not religious, but I have seen the movies and yes, clonazepam is basically the devil in a bottle. I will list my nighttime symptoms and how they have improved:

 

• Hypnic Jerks.  Horrific.  Worst symptom on my list and still the one thing that tortures me every single night.  I still can have 300+ of these damn things each night.  If these would leave, I would be happy and healthy again.  The only positive change came at 6 months off when I was finally capable of getting some sleep without Seroquel or Mirtazipine. Two hours of sleep is my normal right now. I could go on and on with this symptom, but I think I’ve beat everyone over the head with this one so I’ll stop here. 

 

• Hallucinations, both auditory and visual.  I would hear sirens, babies crying and talk radio.  The background noise to all of this was a constant creepy sound that is hard to explain in words.  Sort of similar to the scary background noises in horror films, but different.  Shadows on my walls became intruders in my house. I would see bugs or other scary things out of the corner of my eye.  The visual stuff didn’t last long and the auditory hallucinations lost steam around 3 months off.  I still get them on occasion, especially the creepy background noise.

 

• Muscle spasms, tremors and inner vibrations.  Constant for 9+ months.  The second I would lay down if felt like my body was hovering an inch off my bed from the constant vibrating.  The spasms felt like popcorn kernels popping under my skin- constant!  My feet, hands and face would have tremors the first half of the night.  These symptoms are much better now- maybe 70% better (though I’ve had a few rough nights with them recently).

 

• Diarrhea and constant urination.  For 3+ months I would have both every 2 hours.  I lost so much weight because of it.  Stomach cramps and diarrhea all night long has ended, but the constant urination still happens to me at least twice a week. 

 

• Heart pounding out of my chest.  My goodness, I really thought I would die of a heart attack.  My heart would beat so fast and hard that I could hear it in my head.  I could not lie on my left side. My pulse was always between 100-120 for the first 3 months.  It leveled off to 100 for several months and now it sits between 90-100.  Still quite scary to have, but it doesn’t really bother me anymore compared to the rest.

 

• Strange feelings like the bed was moving.  Seriously, this one was scary.  I would grip onto my sheets as it felt like someone was tipping my bed sideways.  My head also felt like it was falling off my pillow.  Even scarier was the handful of times that it felt like there was person under my bed shaking it.  One time (around month 5) it felt and sounded like there was an explosion in my basement that caused my bed to jerk, literally sending my body flying up off the bed.  I was not sleeping when this happened.  It was in the morning and I had just looked at my alarm clock and laid my head back down.  This happened with my eyes open!  It felt so real that I asked my mom what the heck just happened.  Her and my daughter didn’t hear or feel a thing.  12 months later, I now only have occasional feelings of sliding off the bed.

 

• Burning, stinging pain in my brain, face and arms.  I would put icepacks on my head when I laid down for sleep, several times a month when it was really bad.  This has improved in the last 2 months, but I still have some bad days with it.

 

• Auditory and visual sleep starts.  At the moment of sleep, I might hear a wall crack, a boom, or a sound like someone was running across the floor.  I see flashing lights or a big flash of light as if someone just turned the light on.  Unfortunately, these have not improved.

 

• Nightmares.  When I do sleep, I’m always dreaming. For the first 6 months I would have the most putrid nightmares imaginable.  I would feel the pain of the knife stabbing me, the bullets that hit my back would wake me (with several muscle spasms where the bullets hit), and the voice of the man trying to kill me was still screaming in my ears when I startled awake.  Thank God that the horrific nightmares seem to be over.  I still get nightmares, but not like those.  It would be nice though to wake up and not recall every single damn dream that I had.  None are ever good… most are stressful. 

 

• Morning anxiety: feeling as if I’m drowning in fear and burning acid with unwanted thoughts about death and misery. NAUSEA and dry heaving. Crying so hard that my ribs hurt. This is with me every morning from about 3-4am until I get up.  Horrible feeling that gets worse and worse with each adrenaline rush, jerk and jolt. It feels like my bed is my coffin. Sick, sick feeling.  Wish this would leave.  This is part of the trifecta of my misery:  Hypnic jerks, sleep loss and horrible morning anxiety.

 

 

Thanks for reading.  I see the improvements when I write them down, but damn-it!! I am still so miserable after 12 long months!  I just need to get over the remainder of this crap so I can live my life again.  I am very unwell and questioning if I will ever fully recover. I have hung on this long for the love of my family.  I need to see my little girls’ grow up and hold my husband’s hand until we are old and gray.  The memory of my perfect life I had has not been lost yet.  I cling to it every day in hopes of returning there. 

 

I feel your pain, it's not going to give you the relief you so desperately need but I'm sending you a thousand hugs and a thousand more for tomorrow.

I'm sorry u are still feeling bad. I try to look at how I was during acute, and how I am now. I'm thankful the diarrhea has stopped and the hallucinations, and believe me, I had all the symptoms u listed. Stay positive, u will get better..

I too feel your pain. I can understand and I have many of the symptoms you are describing but I havenever written them down here on BBs. I mostly only talk about the pain I am in physically muscle nerve and paresthesia.  This dominates my life.

 

If you can see the progress that you have made by writing it down then this is really great. I know 12 months is such a long time when we are dealing with this kind of thing but looking forward , think of the list you could be writing in another year's time. May you have much more improvements and feel so much better by then or even sooner. 

I'm sorry, too that you have to deal with all of this at one year out...It really crazy stuff!! All the sxs you mentioned are ones I had during acute, the only one you don't have is my worst, other than anxiety. That would be Tinitus! OMG!! It's horrible. I just want it to stop! I still have a few of the ones you mentioned, just not as bad as while in acute...still annoying (to say the least)

 

Hope you feel some relief very soon!!

 

~CeCe   

Feel so sorry for you....

 

I had the hypnic jerks, the spasms and vivid dreams (no nightmares). Still have the anxiety in the morning and the gloom and doom thoughts (they start around 7 a.m. or so).

 

I hope it gets better for you real soon!

Thank you everyone for commiserating with me.  It does make me feel better to not feel so alone.

 

Cece... How did I forget that one on my list? Yes, I had terrible tinnitus!!  That lasted about 3 months at its worst.  I still have it.  The screeching ringing comes and goes, but doesn't last half the day like it used to.  I would place my white noise machine right next to my ear to help drown it out.  My spells last a few short minutes each day now, with a constant low humming all of the time (like I just left a concert).

 

My other forgotten symptom: night sweats.  Dripping sweat for 3 months. 

I get the nightsweats all the time.  You aren't alone.  In fact, I have the majority of your symptoms too.  I'm almost 9 months off in a couple days.  The good part about this situation is that we at least have acute behind us. Healing will happen...just not as fast as we want it.