Montana80: ... 19 months off main drug

[Montana80]

Hello,

 

First time on this site.  I've been a member of benzo buddies (sleeplessmt) and trying to locate others who suffer in the same way as I do. 

 

I was first introduced to pych meds when my youngest daughter was 2 months old (September of 2014).  I was having some minor difficulty sleeping in between all of the feeding wakeups so I stupidly went to my doctor for help.  She gave me Clonazepam and Trazodone and I alternated nights with those meds.  I stopped both after 6 weeks and had no wd.  A few months later I started them again for sleep after we had noisy houseguests for a lengthy time.  I immediately started getting heart palps; then hypersensitivity to noise a few weeks later; and then major sleep loss after a month.  When I tried stopping these meds I began having panic attacks at night along with these weird twitches I had never experienced.  I was advised to go back on a higher dose of clonazepam and I dropped the trazodone.  This made no difference and eventually my tolerance grew stronger. Over the next several weeks, other drugs were introduced to combat the crippling insomnia and twitches at night... gabapentin, propanolol celexa, doxipen and Seroquel.  I only stayed on the gabapentin and celexa consistently and once I figured out that the clonazepam was the devil drug, I weaned myself off the clonazepam over a 2 month period.  I stayed on the other two meds.

 

Day one off of Clonazepam (September 3, 2015) was beyond horrific.  I immediately went into full blown withdrawal and had just about every symptom you can imagine.  Dripping sweat, hallucinations, IBS, screeching tinnitus, panic attacks, spasms, twitching, weight loss, shaking, tremoring, akasthesia, horrible mental symptoms, burning, constant dry cough, tachycardia, weakness, couldn't breath or even walk a block, dizziness, AND COMPLETE INSOMNIA with worsened jerks/jolts/shocks at the moment of sleep. Even though I was still taking celexa and gabapentin, it did not do a single thing to help any of my symptoms except for the burning skin (gabapentin mildly helped that).  At two weeks off clonazepam, a neurologist told me to get off the other 2 drugs so I did just that.  I was still in complete hell so I did not notice any increase in symptoms.  At that point I was becoming suicidal from zero sleep so I tried a "calming" form of marijuana.  This sent me into a horrible mental state with worsened muscular symptoms, so I checked myself into a pych ward the next morning.  I was placed on Seroquel, gabapentin and clonidine.  With the combo, I was able to sleep up to 3 hours per night.  I did this for 2.5 months until the Seroquel stopped working.  I was able to transition to mirtazapine and got about the same amount of sleep with that drug.  I tapered off of that one and became totally drug free at exactly 6 months off of Clonazepam.  Miraculously, the very month I was drug free I was sleeping 4-6 hours each night and that continued until month 9 which ended up being absolutely horrendous.  Since then, my months have been up and down, with mostly downs. 

 

As of right now, I am in an 8 day wave where I am only sleeping 1-2 hours each night.  The shock/jerks/surges I get are torturing me!!  I can have them every 1-3 minutes at night.  As soon as I doze off, BAM!  I am slammed with what feel like a muscle contraction or jerk followed by an intense surge to my chest that radiates throughout my body.  I have many sensations each night, but that one has been most prevalent this week.  Other symptoms that I continue to have on a constant basis are burning skin, tinnitus, fatigue, depression, POTS, some spasming/twitching during the day and tremors in my feet.  All of these are just a nuisance in my life (except the depression which is sleep related) and I would not be on this forum if it were not for the debiltitating sleep issues that I continue to suffer from.

 

I was never depressed or anxious prior to taking these meds.  I was absolutely loving being the mother to my two little girls before this happened.  I worked part time, I was hosting parties, traveling, camping and taking care of a large home just prior to getting sick.  This was never post partum anxiety like my original doctor tried to make me believe.  I am outraged that she diagnosed me with that!!

 

Please, please, please...

 

If anyone here has had these damn shocks and jerks at night the way that I have, can you contact me?  I have found two other people like this but that alone hasn't given me the hope I need to believe this ends.  I seem to be the most severe case with this awful disorder as I have such an array of sleep starts that tear me out of "almost" sleep. 

 

Thank you for reading.

[Madeleine]

I do think the jerking will subside and go away totally in time.

[mammaP]

Hi Montana, welcome to SA. I am sorry that you are in such a bad wave right now. Hopefully it will lessen a little and give way to a window very soon. 

Can you tell us when the last doses were?  There have been so many changes in such a short time your poor nervous system is struggling to cope.

I can totally relate t the sleep issues. Insomnia has been my most difficult symptom for years. 

 

We have a topic on sleep problems where you might find some helpful suggestions. 

 

http://survivingantidepressants.org/index.php?/topic/53-tips-to-help-sleep-so-many-of-us-have-that-awful-withdrawal-insomnia/?view=findpost&p=153733&hl=amber

 

If you scroll down the page here you will find several topics on what has helped and what has not helped members here, 

http://survivingantidepressants.org/index.php?/topic/604-important-topics-about-symptoms-including-sleep-problems/

 

I still have the jerks when falling asleep,  but they are not as severe as they were. It was terrible for a long time but is getting better, or I am learning to live with it. I sleep in 60-90 minute cycles, and if I get 3 cycles in one night that is a good night. The jerks tend to come just as I am relaxed and drifting off, dragging me back. I don't let them bother me so much now but it has taken me a long time to get to this.

 

 The symptoms will keep changing, one thing will get better and something else will start up. This is the way of withdrawal, we call it  windows and waves. 

 

http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/

 

Many of us find that magnesium and fish oil help with withdrawal.  Magnesium is calming and I wouldn't be without it! 

 

http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/?view=findpost&p=100596&hl=magnesium

 

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

 

 

It will help us if you can fill out your signature for us, you can find how to do that here.... 

 

http://survivingantidepressants.org/index.php?/topic/12364-please-put-your-withdrawal-history-in-your-signature/

[Montana80]

Thank you ladies for responding. Thanks Madeline for writing me back through pm when I couldn't figure out how to respond here. I use a phone for everything since the large screen on my laptop is too stimulating. If I have a better day soon, I will pull it out again and try to set up a signature. My last dose of benzo was 9/03/15 and my last dose of mirtazipine was 03/2016. I do not take any supplements, vitamins, etc and have not touched alcohol in almost 20 months.

 

MommaP, did you have relentless shocks/jerks when they were at their worst? I can have them every 1-3 minutes! When did they finally subside for you?

[AliG]

Montana. I'm sorry for your pain- we have all been there .Have a look at this link :

 

http://survivingantidepressants.org/index.php?/topic/33-waking-with-panic-or-anxiety-managing-cortisol-spikes/

 

We do understand and empathize . Many have overcome this including me .It's transient and gets better.

[mammaP]

Thank you ladies for responding. Thanks Madeline for writing me back through pm when I couldn't figure out how to respond here. I use a phone for everything since the large screen on my laptop is too stimulating. If I have a better day soon, I will pull it out again and try to set up a signature. My last dose of benzo was 9/03/15 and my last dose of mirtazipine was 03/2016. I do not take any supplements, vitamins, etc and have not touched alcohol in almost 20 months.

 

MommaP, did you have relentless shocks/jerks when they were at their worst? I can have them every 1-3 minutes! When did they finally subside for you?

They seemed relentless at times, always when at rest and wake me up when falling asleep. I can't remember when they eased up, symptoms wax and wane so much. I still have the jerks when relaxing and when falling asleep but not as often, they don't bother me so much now. I remember them being a problem when taking effexor, then stopped when tapering and lowering the dose, then started again in withdrawal. I don't think they were as bad as yours seem to be. I hope you get some relief soon. 

[Jtay1230]

Hi montana80, I know it's been a while since you posted! But I read this and cried because I feel the same thing! I've been having the jerks and chest feeling right before I fall asleep the past couple of nights. I've been having withdrawals for 4 months now? Did they go away? Also was recently diagnosed with POTS as well!

[Jtay1230]

Would love to know when these chest jeerks will go away