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Need some re-assurance/ hyping jerks.


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Friends,

I have just finished my PhD and am an international student in the United States.Sadly, the end of this celebration has resulted in me getting severe insomnia. I am very new to insomnia and related medication and rattled by all the symptoms and side effects. Long story short, I started fluxotene in 2014. I was a bit depressed and the university psychiatrist put me on it. I took 15 mg every other day and was stable on it till now. In March I got a bad re during cold and since I was not that educated about side effects I left fluxotene cold turkey. I also had a recurring doze of cold and was put on steroids. Within a week, I got severe anxiety, insomnia and hyping jerks making it impossible to sleep. I went to my psychiatrist who put me on 2mg lunesta, 1 mg clonopin and melatonin 10 mg. But I couldn't sleep. He tried to reinstate antidepressant fluxotene and lexapro later. I couldn't stand it and was very sick in 3 days. He also tried an antihistamine and my jerks got worse. Sick of it I went to another hospital and the general physician put me on providing to stop the jerks. I started getting hypnagogic hallucinations and got really sick. Then the medication was stopped and I was put on mirtzapine 30 mg and klonopin 1 mg. It works fine for 2 weeks but day before yesterday the jerks came back. I felt very scared. I am new to the media health care and have little understanding of how things work in a new country. Do you think I need a readjustment of dosage or has the most stopped working? Secondly I have to travel and be in a new time zone 8 hours ahead. I am wondering how will Imanage my insomnia there? Pm

 

I am looking for advice on the two questions by people with insomnia?

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Apologies for the typos. I meant hypnic jerks that make me twitch and wake me up repeatedly throughout the night.
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Wow, what a drug-fest you have been on! I had to make notes to clarify the situation--I would make a "signature" at the bottom of your post to help people follow your drug history. If you click on "Profile" at the top of the page, then "Forum Profile", you will see a signature box to fill out.

 

I will be blunt--drugs are not the answer! Drugs are what created this situation in the first place, and I think you would be best served by getting off them as quickly and safely as you can. If you can find a doctor who will support you in getting drug-free, rather than one that prescribes stuff willy-nilly, that would probably be very helpful.

 

But a few questions--to clarify--you were on fluoxetine for 3 years? Why did you take it every other day?

What is the drug that the GP put you on that caused hallucinations? for how long?

How long have you been on Klonopin 1 mg?

How long have you been on mirtazapine 30 mg?

Are you on any other drugs (or supplements) besides mirtazapine and Klonopin at this point?

 

30 mg. of mirtazapine is a large dose for insomnia, many find amounts of 15 mg. or more are activating and actually cause insomnia rather than helping. (Unless you are being treated for depression also?) You might do much better on a lower dose such as 7.5 mg. or even 3.75 mg.

 

 

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Thanks for replying. I will post the signature and have more conversations with you. I am a healthy 32 year old. All my blood work is okay. They checked my heart(ECG)... nothing wrong with that. I am very skeptical and very afraid of the American health care after this. Going to a new psychiatrist today because the old one at the university prescribed *most* of the medication and I decided to go elsewhere because I could not stand it any more. I want to be off the benzo as quickly as possible but I am too afraid of it. I have been taking it for less than 2 months and I feel that I can still get off while furthering this shit-show.
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How much can you sleep if you try to without meds?  If you are capable of sleep, I would suggest getting off all meds (I won't advise for or against a slow taper) and stay off all meds.  I have the exact same problem as you and I took many meds to combat the issue.  They possibly set me back as I'm still suffering at 21 months off of clonazepam. 

 

I agree.  I'm leery too of this medical system we have here in the states.  You will be pushed onto meds by most doctors and very few will recognize this as a real condition. 

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Alright friends. I am back with an update. My hypnic jerks wouldn't let me sleep so can't quit cold turkey. And I have been on prozac for almost 2+ years and pretty stable. I talked to my psychiatrist and he agreed to take me off klonopin .25 mg taper every two weeks. He intends to keep me on the Mirt 30 mgs. So things do not go out of hand. Let's see where it goes. He said the.25 mg taper would be helpful and not give me terrible side effects (hopefully). And once I am a bit stable then I can make a decision about the Mirt (I am travelling to another countryand going through some major life transitions so want to be a bit stable). But my current goal is to get off Klonopin as quickly as possible. What are your thoughts on this plan?
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That plan sounds very sensible, tackling the Klonopin first. You could even smooth out the Klonopin taper more by dropping 1/8th every week, versus .25 mg. every 2 weeks. But with your usage, you should be just fine. You can always make adjustments along the way based on how the taper goes.

 

The mirtazapine dose is high for insomnia, but if it is helping with depression, and not activating you too much, then staying on it for a while shouldn't hurt--just watch the diet, not too many carbs!

 

 

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Thanks for the encouragement and positive vibes. I wish the same for you and am glad that I read your message (about asking for a taper) before visiting the new psychiatrist. Unlike the guy at the university, this man seems more willing to work with me.
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  • 2 weeks later...
Alright friends, I am back. The klonopin taper is going okay, but my period is ten day late. Took a home pregnancy test, which came out negative. Will also get a blood test to make sure but now these medicines have messed my period. So many complications.
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I am not in the least surprised to hear that the Klonopin has messed up your hormones. Glad to hear the test came out negative, they are usually pretty darn accurate. Take care and I'm sure things will get sorted out hormonally.
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  • 2 weeks later...
I am tired and deeply depressed with how things are progressing. I made a third cut to my klonopin and now on 0.5 mg at night with 30 mg mirtzapine. I am having twitches all over my body and couldn't sleep at all. The first two 0.25 mg cuts were fine but since the 13th of June lowering to 0.5 is returning my body jerks and insomnia. I feel so helpless. I don't know whether the jerks are my previous conditioning recurring, Matt's dosage or the klonopin cut. I just don't know what to do or to even ask my psychiatrist ? I worry i will be put on some more nasty stuff. Please advice.
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Sorry to hear you are in a rough spot. Hopefully, if you can hold at this level, you will soon stabilize. It is was me, I would hold and take it day by day. If you can stabilize, I would try making smaller cuts from here on out if at all possible. It is very hard to figure out what is causing the hypnic jerks!

 

Since you are having insomnia, you might want to consider lowering your mirtazapine dosage. Most find that higher doses of mirtazapine (like 15-30 mg), are activating rather than sedating. Most have better results for insomnia at a dosage of 7.5 or even 3.75 mg.

 

Try not to panic and just take it day by day. If you do talk to your doctor, remember you don't have to take the meds they prescribe, you can take your time and do research for yourself, then make a decision.

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Is it safe to cut a 30 mg tablet if it has a line in the middle of It? The prescription pills I have say do not cut, but they are an oblong tablet with a line in the middle.
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It is fine to cut a pill up however you like, unless the pill is a "controlled release" pill (CR). I have not heard of controlled-release mirtazapine, so I doubt that is the case.
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My psychiatrist is now sending me to the neurologist. The neurologist has,already told me I am okay. So I don't know what I should ask him about regarding the twitches and jerks?
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I would ask him first and foremost if he is aware of post acute withdrawal syndrome from pych meds.  And if he is aware, then ask if he believes that these kind of brain symptoms (the jerks and twitches) will most likely go away if you remain drug free.  Here's the thing... I've seen 2 neurologists and neither one was informed about PAWS (particularly in people like me who were short term users).  However, a buddy that I regularly speak to sat down with 2 neurologists at John Hopkins hospital and they both reassured her that the neuro chemical damage we are experiencing will go away as long as we stay away from brain meds.  Are you looking to be placed on another medication for this?  Have you been on other forums for people who have these jerks and shocks every night?  I have followed a few of them and something stands out amongst the people on them... Most of them take clonazepam or other drugs and none of them are improving (unless they didn't get this from medication).  The only people that I've seen improve from these horrible nocturnal jerking symptoms are those who remained drug free.  Unfortunately, it took a few of them 2+ years to recover.  Most took much less time.  I personally HAD to take a few meds after stopping closnzepam due to the severity of my symptoms.  I am assuming they held me back from healing properly.  I am 21 months from cloanzepam, 18 months from seroquel, 15 months from mirtazipine/gabapentin and 11 months from occasional use of Benadryl (even Benadryl is known to cause this condition).  My daytime twitching is much better and I am now capable of sleeping at least 2 hours each night, unaided.  I average 4 hours sleep.  This was impossible the first 6 months off clonazepam.  I still have a LONG ways to go, but at least I'm not bound to medications any longer.  I hope to remain this way as that heavy chain was a huge burden... And keeping me sick.  That I know. 
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Thank you. I will continue with the klonopin taper. It isn't entirely stopping my jerks anyway so why be on it and get more twitches. They are in fact worsening things. In the meantime, do you suggest I stick to the 30 mg mirt till the klonopin finishes. If I keep the .25 cut I can finish the klonopin by July. Or shod I reduce the mirt dosage too? I still need to sleep and get over the horrible mess I am in. Kindly advice.
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I agree that you need some sleep and that is exactly why I had to take meds for the first 6 months off of closnzepam.  When was the last time that you attempted to sleep without any meds?  Could you sleep at all?  I couldn't sleep for even one second and tried to many times... Even going up to 4 days with zero sleep several times before I finally took something.  Mirtazipine helped me at month 3, at a dose below 7.5mg.  Anything more would have been too stimulating.  I worked myself down (quickly) to 1mg of mirtazipine and jumped.  I didn't seem to react to mirtazipine; however, I'm still very ill and have to wonder if the meds prolonged my suffering.  I will never know...  but I do know that I absolutely needed to take something or else I would have jumped off a cliff or died of a stress induced heart attack.  For me, I've been "coping" on 2-5 hours sleep for the last 15 months.  Everyone is different, but hopefully you will be able to tolerate as little sleep as me until things hopefully resolve.  Some say they get less sleep (but I don't think they are getting shocked and jerked all night long, which makes insomnia 100 times worse). 
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Yes the jerks terrify me. And I had several bouts where I did not sleep for 3 days and went intoER that just wasted money nothing else
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I am very sorry for all of us who suffer with this condition.  Your case seems unique as this started with an antidepressant and a steroid.  Just recently someone posted about getting this from quitting caffeine cold turkey.  Whatever is happening in our brains, will hopefully settle down and go back to normal with time (too much time in my case).  If things become much worse after quitting the benzo, do not try marijuana unless you want to risk going completely nuts!  That was the worst day of my life and my heartbeat was 160+, laying down. Every muscle was in constant spasm too, among other horrific things.  Seroquel helped me for 2.5 months, but I would not take that drug unless you are as bad of a case as me.
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Hi Noshi,

 

I did a CT of oxazepam about 7 weeks ago in the UK. I am currently living and working in the Far East. So it is possible to move while you are still recovering . My main issue is insomnia as it is for many people. I hope your move abroad goes well. You will need to look for a local doctor who is sympathetic and can prescribe you the drugs that you will need (@@@@).

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I have to leave US and move to my home country to fill my service requirement. I am a already sad and concerned lea Bing my husband behind. On top of it I am getting these jerks and severe insomnia. I feel hopeless and scared going into a new time zone 8 plus hours ahead and holding a steady job. How are you coping?
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I am in China which isn't my home country and I think coping with the insomnia is a challenge. I am trying to go to bed early as I nearly always have done all my life . I am trying to focus on the sleep pattern and establish a new way of sleeping . This will take some time and I am sure you can do this in your home country and help your recovery (@@@@).
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The neurologist wants to put me on Mirapex. I have read terrible things about Mirapex. I am not sure if I should take it and get myself into another hell.
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Hi Noshi84,

 

I also sometimes get this jerking phenomenon and it quickly wakes me up and stops me sleeping . I often get up and out of bed and have to walk around for a period of time to recover as it brings on

a panic attack. It takes courage to go back in there and try to go to sleep again . I hope these jerks improve with time for you.(@@@@).

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