EmmsieA: Hypnic jerks - how long will they last?

[EmmsieA]

Moderator's note: link to benzo forum thread - EmmiseA: Can I taper an antidepressant and benzo at same time?

 

Hello,

I came on here for some much needed advice/ reassurance. Back in March 2018 I had a horrific reaction to being put on Sertraline 25mg for postnatal anxiety/depression. After 2 weeks, the insomnia was dreadful, anxiety and depression was through the roof. I switched onto citalopram 10mg and after no change in symptoms after a few days apart from developing horrible Hypnic jerks, I was told to come off it by my psychiatrist. The brain zaps, skin crawling, heart palpitations and other side effects lessened over a few weeks but I couldn’t sleep due to these awful jerks and my anxiety and depression were through the roof. I went back to my psychiatrist who put me on quitiepine and pregabalin and 1mg clonazepam. I slept on the clonazepam no problem, but still noticed a few jerks on sleep onset. I successfully tapered off the pregabalin, quitiepine and clonazepam with no new effects but the doctors decided I needed an antidepressant and put me on 30mg of Mirtazapine. I am now on Mirtazipine and down to 0.375mg clonazepam, this being given to me again to help the jerks. 5 months later I still have the Hypnic jerks and muscle fasciculations. They haven’t got any worse on the Mirtazapine - if anything they have got somewhat better - but I still have a few nights a month even when I’m this low dose of clonazepam where they don’t allow me any sleep at all, the twitching is so bad. I really really need to hear some success stories of the jerks going away, please!! I’m afraid to touch anything at the moment in terms of the antidepressant, but am still tapering clonazepam with the aim of being off it soon. My aim is to try and get stable with these jerks and my sleep patterns and then very slowly taper off mirtazipine. Please no horror stories, my nerves just can’t take it!! I need to hear success stories. Many thanks xxx

Edited October 13, 2018 by Shep
added link to benzo forum thread and tags

[Gridley]

Here is SA's topic: hypnic-jerks

 

It includes several success stories about the jerks stopping.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.

 

Account Settings – Create or Edit a signature.

 

[EmmsieA]

Thank you so much, Gridley, I appreciate it. I just hope and pray they can still go away whilst I taper the clonazepam and stabilise for the moment on the Mirtazipine. 

[EmmsieA]

I know this is an old thread but (mod note:  moved from the-slowness-of-slow-tapers-micro-taper) 

 

I wonder if anyone could help me out. I had a bad reaction to SSRI’s that I was on for only 5 weeks total back in March 2018. I stopped taking them but began to have severe problems with my sleep, mostly Hypnic jerks which are so horrible. I still have them now, 8 months later and am terrified they will never go. I have been put on a benzo to control them (clonazepam) and have tapered to 0.45mg and holding. I am also on 30mg Mirtazipine. I am so desperate to heal and am wondering what to do. Most people have told me to get off the benzo first so I have been planning a slow taper off that (I’m so saddened to see it may take me 2.5 years) and then the mirtazipine after that (another 3.5 year taper  ) I have two tiny children and am just miserable that this is happening but I need to keep functional. If anyone has any sound advice I would be so grateful. I need to remain functional for my kids. 

Also, do you think my Hypnic jerks/ sleep situation can get better even when on a slow taper? I’ve been told that my body won’t be able to fully heal until I’m off the meds which makes me unbelievably sad to think this could take so many years. Please help! X 

 

Edited October 17, 2018 by ChessieCat
mod note

[Altostrata]

Hello, Emmsie.

 

Please stop tapering the clonazepam for the time being.

 

Whoever is telling you to go off the clonazepam first and your "body won’t be able to fully heal until I’m off the meds" is giving you bad advice.

 

What is your sleep pattern? When do the hypnic jerks occur? How much sleep do you get? What effect does the mirtazapine have on you?

[EmmsieA]

Thank you so much for replying Altostrata.

 

ive has the sleep jerks for 8 months since coming off the SSRI’s. Usually I sleep maybe 4-5 hours. If I wake up I can’t usually get back to sleep because of the jerks but I can usually fall asleep on the current dosages I’m on. 

 

I havent seen anything necessarily good from mirtazipine, it was definitely more alerting at 30mg at the start, but I don’t think I really noticed it being sedative lower when I was on 15mg.  I’m not sure if it’s helped me as an AD as I am equally depressed as I was before taking it. 

 

Im so terribly worried about what to do. Everyone says get off the benzo first as it is the worst - but ifnit is the only thing helping me sleep then perhaps I should start a Mirtazipine taper? 

 

Also so I am on 0.45mg clonazepam but don’t have enough tablets (they were by a compounded pharmacy in the Netherlands that I can’t easily get more of) to stay at that dose. Either I have to go up to 0.5mg or down to 0.375mg with my new prescription. 

 

Ehat do do you think I should do? 

[EmmsieA]

So I can’t seem to nap at all during the day 

[Altostrata]

2 hours ago, Altostrata said:

What is your sleep pattern? When do the hypnic jerks occur? How much sleep do you get?

 

I need to know detail for this. What time do you go to sleep? What time do the hypnic jerks occur? When do you get up in the morning? How do you feel then? Do you feel better or worse after you take your drugs? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[EmmsieA]

I go to sleep by 10:30pm usually, after having wound down with a relaxing bath and sometimes some bedtime yoga. 

More often than not these days, I fall asleep ok without jerks on sleep onset. 

 

I usually wake at around 4am and can’t get back to sleep after that. The jerks seem to rotate from extremities, to a shoulder or even in my jaw or forehead. 

 

I isually try and at least rest until 6:30am and do some breathing techniques as I’m usually feeling pretty anxious. When I get up I’m generally anxious and sad, not to mention tired. 

 

I take my meds between 8 and 9pm each evening. I generally don’t feel any better or worse after taking them. Some nights I feel like they really hit me and I’m tired, other nights not so much.

[Altostrata]

What time do the hypnic jerks occur? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[EmmsieA]

I will do - I have a list and will try and upload it later on. But in essence, the Hypnic jerks now occur when I wake in the early morning, usually around 4am. They then prevent me from going back to sleep. I also get them if I try and fall asleep during the day. My insomnia (due to intense stress over all of this) has got much worse so the anxiety over the drugs and what to do is really not helping at all. I’m absolutely terrified. And terrified about how long this is going to go on for :( 

I really need some advice on what to taper first and how to do it. My family really need me x 

[Shep]

Emmsie, this format is great for keeping symptom and drug notes:

 

Drug and Symptoms Journal

 

Please also include:

• any supplements you are taking
• when you eat
• how much sleep you are getting each night

 

 

 

[EmmsieA]

Emma's symptom and sleep log.xlsx

[EmmsieA]

Just posted my log - I hope it helps. A big thank you in advance for advising me. 

On another note, I’ve been given some advice by a psychiatrist who seems to understand my situation more than any others I have seen and maybe more in line with Altostrata. He suggested to hold the clonazepam at 0.5mg (or even up dose to 1mg to ensure stable sleep and no jerks) and to taper off the mirtazipine first. 

 

This sounds fairly sensible as far as the dire decisions go that have to be made, but I’m terrified of being on the benzo and becoming tolerant etc and have always been told by everyone else to taper that first. But I really need to sleep more than I am at the moment, I am well aware it could be worse and at least I am getting some sleep...but just so frightened of making another wrong turn and don’t know who to listen to! 

 

Thanks so much x 

[Shep]

24 minutes ago, EmmsieA said:

Emma's symptom and sleep log.xlsx

 

Please post in your thread, as opposed to an attachment. You can copy and paste the information here in a post. We also need to know how you felt before and after each dose, so the format listed here is the best way to give the information.

 

Drug and Symptoms Journal

 

This will help to see if some of your symptoms may be interdose withdrawal and place your symptoms within context of when you dose. 

 

20 minutes ago, EmmsieA said:

He suggested to hold the clonazepam at 0.5mg (or even up dose to 1mg to ensure stable sleep and no jerks) and to taper off the mirtazipine first. 

 

I wouldn't double your benzo dose. That's too much of an increase to go from .5 to 1 mg. 

 

Going up to .5 mg (your signature states you're currently at .45 mg) may work, depending on when you were last at .5 mg. Has it been more than 2 -4 weeks since you were last at .5 mg? 

 

The reason I'm asking is because updosing a benzo is different than an antidepressant and other drugs. For a benzo, updosing works best within 2 - 4 weeks of your last reduction. You'll want to target your updose to the most recent dose you were on that allowed you a decent sleep. It's more likely to work if you were last on that dose within the past month. 

 

Also, please keep in mind that experiencing withdrawal may have sensitized you to drug and a larger dose can cause an adverse reaction and could go paradoxical. The longer you've been at a lower dose, the more your nervous system has acclimated to it, so we don't recommend large updoses for this reason. 

 

So if you do updose, please keep that in mind and let's discuss first after reviewing your drug and symptoms journal.

 

For more, please see:

 

Notes on Benzo Updosing

 

From the symptoms listed so far in your Excel sheet, it appears your sleep is getting worse the more you reduce the benzo. I would hold or possibly updose a very small amount and see if you can stabilize before making any other changes. 

 

 

[EmmsieA]

Date	Eating times (NB I follow a gluten/dairy/caffeine and sugar free diet	Supplements	Meds taken at 8pm Daily	Withdrawal Symptoms	Jerks/Spasms	Sleep	Anxiety (1-10)	Other
25-Sep	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.5 clonazepam 30mg mirtazipine	muscle fasiculations during day	None recalled	10:45-6:30 (7hrs 45mins)	4
26/09/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.5 clonazepam 30mg mirtazipine	more muscle fasiculations	None recalled	10:45-6:30 (7hrs 45mins)	4
27/09/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.5 clonazepam 30mg mirtazipine	more muscle fasiculations	tiny jerks on sleep onset	10:30-6am (7hrs 30mins)	4
28/09/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.5 clonazepam 30mg mirtazipine	more muscle fasiculations	None recalled	10:30 - 6 (and woke up once because of Tamsin but got back to sleep after) (7ish hrs)	5	Bad stomach ache
29/09/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	muscle fasiculations during day	One big twitch in shoulder around 6am	10:30-4:30 (6 hours) woke due to stomach ache	5	Bad stomach ache
30/09/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day	None recalled	10:30-5 (6.5 hours)	4	Bad stomach ache
01/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day	Jerks on waking at 4:45 plus anxiety. Couldn’t get back to sleep	11-4:45 (5.45hrs)	4
02/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day. Minor head pressure	None recalled	12-6 (6 hours)	5
03/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day. Minor head pressure	None recalled	11-4:45 (5.45hrs)	7
04/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.44mg clonazepam in liquid form 30mg mirtazipine	minor muscle fasiculations during day. Minor head pressure. AT NIGHT: heart palpitations, sweating and unable to sleep, jerks (not intense but still present)		4-6am (2 hours)	8
05/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam (0.375mg pill + 0.73ml liquid) 30mg mirtazipine	minor muscle fasiculations during day. Minor head pressure. More jittery and anxious. Very tearful	Small muscle jolts when trying to doze at 6:30 preventing getting back to sleep	10:30-6:30 (8 hours)	5
06/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam (0.375mg pill + 0.73ml liquid) 30mg mirtazipine	minor muscle fasiculations during day. Minor head pressure	Heart palpitations, sweating and unable to sleep, jerks most of the night	4-6:30am (2.5 hours)	5
07/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day. Headaches that would come and goTearful and low. Crying a lot	no jerks on sleep onset. minor jerks in fingers and toes on waking preventing falling back asleep	11:45-6:30 (6.45hrs)	8
08/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day. Headache/pressure that would come and go	slept 10:45-1am then woke but got back to sleep around 1:30 until 6:30am. Don’t remember any jerks.	7ish hours	7
09/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day.Headache/pressure that would come and go. Tearful and low at points	Couldn’t get to sleep due to anxiety and stress mainly. One or two jerks. Slept by about 1:30 but then L woke at 4am and couldn’t get back to sleep due to minor jerks in fingers and toes	2.5 hours	9
10/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day.Headache/pressure that would come and go. Tearful and low at points	A couple of jerks in shoulders on going to sleep. Woke early at 4:45. Unable to get back to sleep	4.5 hours	7
11/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day.Headache/pressure better. Tearful and low at points	No jerks recalled on sleep onset. Slept 10:45-4:45 when L woke. Couldn’t get back to sleep after that	6ish hours	7
12/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day	No jerks recalled on sleep onset. Slept 10:45-5:30. Couldn’t sleep after that due to little jerks in random parts of body	6.45hrs	8
13/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day	No jerks recalled on sleep onset. Slept 10:45-5:30. Couldn’t sleep after that due to little jerks in random parts of body	6.45hrs	8
14/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	very minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day	No jerks recalled on sleep onset. Slept 10:45-4:45. Couldn’t sleep after that due to little jerks in random parts of body	6 hours	8
15/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	very minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day	No jerks recalled on sleep onset. Slept 10:45-4:45. Couldn’t sleep after that due to little jerks in random parts of body	6 hours	8
16/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	very minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day	No jerks recalled on sleep onset. Slept 10:45-3:45. Couldn’t sleep after that due to little jerks in random parts of body	5 hours
17/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	very minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day. A lot of anxiety	No jerks recalled on sleep onset. Slept 10:45-3:45. Couldn’t sleep after that due to little jerks in feet	5 hours
18/10/2018	8:30 breakfast 12:30 lunch 8:30pm dinner	Symprove probiotic 60mls, Methyl Factors (Trimethylglycine 400mg, Riboflavin 3mg, Vitamin B6 as Pyridoxal 5 phosphate 15mg, Folic acid 800 ug, Vitamin B12 1000ug, Zinc 5.0mg) Omega 3 Vegan (EPA 166mg, DHA 334mg)	0.45clonazepam 30mg mirtazipine	very minor muscle fasiculations during day.Headache/pressure better. Very tearful and low a lot of the day. A lot of anxiety	No jerks recalled on sleep onset. Slept 11:30-3:30. Got back to sleep until 4:30. Couldn’t sleep after that due to little jerks in extremities	5 hours

[EmmsieA]

Thank you so much for replying, Shep.

 

I hope that I have posted my Drugs and Symptoms journal correctly.

 

It's been just shy of 3 weeks since I lowered my benzo dose by 10%, so it might be worth up dosing back to 0.5mg? I've found that it is hit and miss with the sleep though, sometimes i'll have a good patch other times not so good. So I am just wondering what to taper first really. I really want to try and avoid bouncing around on doses as I've been pulled on and off drugs so much over the last 8 months. It's the jerks and the sleep issues that have always been my 'thing', hence being put on them after the SSRI's in the first place :(  I really hope that they will go away….

 

I sort of feel like it would be more sensible to hold the clonazepam at 0.5mg and then when stable again, start the mort taper but what do you think?

 

Thanks so much.

[Shep]

23 hours ago, EmmsieA said:

I hope that I have posted my Drugs and Symptoms journal correctly.

 

Thanks, Emmsie. It's hard to read and doesn't give the before and after from each of your doses, but it does provide some important information. Going forward, please use this format:

 

 

Drug and Symptoms Journal

 

It will be good to have the information in that format so we can see how your drugs and your supplements are effecting you before and after taking them. Please research your supplements, as some people find the B vitamins to ramp up symptoms. I'm not familiar with all of your supplements, so I'll leave some links for you to research and feel free to post any questions on these threads for the mods and members who are familiar: 

 

Supplements - what helps, what doesn't?

 

Important topics about tests, supplements, treatments, diet

 

If certain supplements are making you feel worse, you may want to target your foods to get those specific vitamins until you are more healed from withdrawal. The people who do the best generally have the simplest intake of supplements and vitamins and are targeting their foods to meet their needs, as much as possible. Please see:

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

On 10/19/2018 at 9:33 AM, EmmsieA said:

It's been just shy of 3 weeks since I lowered my benzo dose by 10%, so it might be worth up dosing back to 0.5mg?

 

Yes, that sounds like a reasonable plan. While there is no guarantee, it's within the safety window of under a month. Definitely worth a shot. 

 

On 10/19/2018 at 9:33 AM, EmmsieA said:

I sort of feel like it would be more sensible to hold the clonazepam at 0.5mg and then when stable again, start the mort taper but what do you think?

 

This makes a lot of sense, Emmsie. When you are ready to taper the mirtazapine, you may want to only decrease it until you are down to around 7.5 mg and then get off the clonazepam. The reason I'm recommending this is because mirtazapine becomes more sedating on lower doses. Please see:

 

Tips for tapering off mirtazapine (Remeron)

 

 

On 4/10/2012 at 8:07 PM, Altostrata said:

Mirtazapine has a high affinity for histamine receptors and is therefore sedating at low doses. This is countered to some extent by its enhancement of noradrenergic neurotransmission at higher doses, making mirtazapine less sedative as its dosage is increased.

 

 

Please let us know how you're doing over the coming days as you stabilize on the benzo. 

[EmmsieA]

Thank you so much for your reply, Shep. I’m sorry you still couldn’t read my Drug and Symptoms format, I will have a go at providing the info in the correct formar when I have more time. 

 

I put the clonazepam back up to 0.5mg last night so will stabilise there for the next few days and will let you know how it goes. So far I feel ok. 

 

I’m trying to find a doctor who understands the importance of tapering and will support me through this as I will need someone to prescribe Mirtazipine tablets in various strengths to start the taper. I’ve thought about crushing and weighing the mirtazipine 30mg tablets but crushing them to a powder seems to be pretty inaccurate as so much is left on the pill crusher or pestle and mortar etc. And weighing just fragments, wouldn’t the distribution of drug in any pill be off and therefore inaccurate,since my 30mg tablets aren’t scored? 

Liquid doesn’t seem to agree with me, so I’d rather see how I get on with cutting down tablets first. Any tips would be much appreciated. I’ll aim to just drop to 27mg first for a month and see how I get on. But just not sure how to accurately measure that. 

 

Thanks so much again and look forward to hearing from you! 

[Altostrata]

What do you mean by "muscle fasiculations"?

 

What we're looking for is symptoms that might regularly occur before or after you take a drug. Rather than a spreadsheet, use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

The early-morning jerks and other symptoms may be because of the normal cortisol cycle. Darkening the bedroom and wearing a sleep mask can help, see Waking with panic or anxiety -- managing cortisol spikes

 

Can you get fish oil and magnesium supplements, see http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

A lot of people find them helpful. Try a little bit of one at a time to see how it affects you. They may help resolve the hypnic jerks.

 

We have many members who are weighing tablets, tablet fragments, and powders to make their own capsules. Or, you might be able to get custom capsules compounded, with a prescription.

 

Please do not change more than one drug at a time. If I were you, I'd stabilize the clonazepam dosage before tapering mirtazapine.

[EmmsieA]

Thank you so much for replying, Altostrata. I really appreciate it as I’m really struggling at the moment and terrified of the drugs I’m on and of tapering and of what’s to come. 

 

My main symptoms seem to be completely random and don’t seem to have a pattern before or after taking the drugs. This is because the Hypnic jerks were induced by the SSRI’s that I took back in March. They started as I came off them after just 5 weeks and have continued in a random cycle ever since. They don’t seem to be made better or worse than the meds I am currently on. Some nights I have them more than others but my studies over the last 8 months show no particular pattern. The early morning waking  has got worse and may indeed be the cortisol levels induced by extreme anxiety (also we are under a flight path and the planes often start up around this time. I wear ear plugs but am so extra sensitive now that I think this could be why. I do also wear an eye mask). 

 

I was taking fish oil and magnesium for a number of months but unfortunately it didn’t seem to do anything for the jerks. My nutritionist switched me over to the supplements I am currently in as I did a lot of functional tests to show where I was lacking. However, I could try them again! 

 

Thank you for telling me about people weighing powder/fragments or getting custom pills made. I wonder if you know of a compounding pharmacy in the UK that I could try? I will of course stabilise on the 0.5mg clonazepam first. 

 

 

[ChessieCat]

4 hours ago, Altostrata said:

What we're looking for is symptoms that might regularly occur before or after you take a drug. Rather than a spreadsheet, use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

This is an example of the format to use:

 

6 a.m. Woke and vomited
8 a.m. Took 2.5mg Lexapro
10 a.m. Had diarrhea
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Stomachache
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Headache got worse
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke with headache

[EmmsieA]

Hello all, 

 

here is an idea of how my days and nights go:

 

7am take Symprove probiotic 
8 a.m. Ate breakfast. Took omega 3 supplement and Methyl factors supplement (see exact ingredients in above post) 
Random throughout morning and rest of day:  muscle twitches/quivering in various parts of body, sometimes more intense than at other times (lasting a few seconds) 

10am very tearful, crying spell that lasted 30mins. Anxiety high 
12:30p.m. Ate lunch

4:30pm snack 
8p.m. Ate dinner

8:30pm took 30mg mirtazipine. 0.5mg clonazepam 
9:00 crying spell lasted one hour. Felt better after. 
9:30pm has bath and relaxed 
10:30 p.m. Fell asleep
4:30 a.m. Woke with anxiety

4:30 onwards - tried to get back to sleep but high anxiety, one big jerk in shoulder, small jerks in fingers and toes. Unable to get back to sleep. 

 

I hope that helps. It’s been similar to this for a while now. Occasionally  I am able to get back to sleep after the 4:30 wake up, on a good night. But there is no pattern at all to the jerks and twitches it seems. 

[EmmsieA]

Last night was pretty terrible. 

 

8:30pm ate dinner

9pm took meds 

11pm went to bed but couldn’t sleep - every time o tried to fall asleep I had a mild brain crack that prevented me from doing so and jerks 

2am took 50mg promithezine 

3am fell asleep, very vivid dreams

6am woke tried to get back to sleep but couldn’t because of twitches 

 

The brand of clonazepam changed yesterday from what I had previously been on and I wonder if this was what had an effect...

 

so sick and tired of this. Not being able to sleep and then having two meds to try and get off is really really getting me down. Can’t stop crying   

[Bee5]

Hi Emmsie,

Sorry to hear you're struggling. Although you said that the clonazepam was prescribed to help with jerks, in my experience, tapering off benzos CAUSES jerks, and there is very little you can do about it (and obviously the answer is NOT to take another benzo or another medication). When I came off my benzos several years ago, I was plagued with random twitches and jerks for at least a month after my final dose. Even now, I have merely changed the formulation of my SSRI (not even a benzo) and there are nights that I experience jerks when trying to fall asleep. The daytime jerks were always random and were usually a single muscle or a single muscle group, but the night time ones are always these 'deep' twitches from my solar plexus area; they are full-body jerks. Don't let this get you down as it will eventually go away, but no-one knows when. I found magnesium glycinate to help a bit.

Regards,

Bee

[EmmsieA]

Thanks for the reply, Bea.

im really not sure how much more of this I can take. It’s been 8 months of the jerks since coming off the SSRI’s that started them. Then, lucky me, I got put on a rollercoaster of other meds to try and stop the jerks. 

I feel terribly hopeless and depressed - terrified of trying to get off the clonazepam and off the mirtazipine and how long this will all take. I have two beautiful little girls and I am a mess, a disgrace of a mother. I really don’t know what to do. I hate this and feel really stuck and doomed. Sorry to be so pessimistic but really I am at my wits and. 

[Shep]

2 hours ago, EmmsieA said:

The brand of clonazepam changed yesterday from what I had previously been on and I wonder if this was what had an effect...

 

 

Yes, a change of brand can definitely cause upticks in symptoms. Many members report this. Hopefully things will settle over the coming days as you adjust to it. 

 

2 hours ago, EmmsieA said:

2am took 50mg promithezine 

 

Please be careful of taking antihistamines such as promethazine. This is okay to do periodically, but it can cause upticks in symptoms, as well. 

 

Antihistamines for withdrawal insomnia (diphenhydramine, doxylamine, hydroxyzine)

 

It looks like you may be getting some interdose withdrawal from the clonazepam. Let's give yourself a few days to get use to the new brand of clonazepam and discuss spacing out your benzo to two times a day. Instead of taking it one time a day, you would divide the .25 mg into two doses and take it twice a day.

 

Please let me know your thoughts on this and if you think it might help with some of your daytime symptoms and I can post a schedule for moving your dose (we recommend only moving one hour per day, as it's gentlest on your nervous system). 

[EmmsieA]

Thank you, Shep. I’m able to get the previous brand this afternoon so I will go back to that and see if it makes a difference. 

Im unsure about dividing the doses - usually I’ve taken it at bed time to try and help control the jerks and make me sleep. I thought that clonazepam had a long enough half life that you shouldn’t really get interdose withdrawals? 

Im really finding it hard to hold on. Not far off suicidal if I’m honest but I can’t leave my girls and my family. Although I don’t know what’s worse for them at the moment, with me like this...

if it’s going to take years to get through this, living with these jerks and the hell I’m currently in, I’m just not sure I am strong enough.

[manymoretodays]

On 10/20/2018 at 7:43 AM, Shep said:

If certain supplements are making you feel worse, you may want to target your foods to get those specific vitamins until you are more healed from withdrawal. The people who do the best generally have the simplest intake of supplements and vitamins and are targeting their foods to meet their needs, as much as possible. Please see:

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

On 10/20/2018 at 2:39 PM, EmmsieA said:

I was taking fish oil and magnesium for a number of months but unfortunately it didn’t seem to do anything for the jerks. My nutritionist switched me over to the supplements I am currently in as I did a lot of functional tests to show where I was lacking. However, I could try them again! 

 

2 hours ago, EmmsieA said:

if it’s going to take years to get through this, living with these jerks and the hell I’m currently in, I’m just not sure I am strong enough.

 

Hi EmmsieA,

And welcome.

I did a lot of years with both medications(not your specific ones now though) and a functional medicine doctor involved.  And now.......I've got to say I agree with Shep.  I had dropped much of what I was taking of the supplements from my doctor(a GP-functional medicine) prior to my arrival here and then slowly got going on both the magnesium and fish oil.    My doctor did all sorts of tests and I did all sorts of reading and for me.......it never was quite the way back to health.  So I encourage you when you get the dosing with your clonazepam squared away, to take a look at the links Alto provided, and perhaps begin to minimize some of those other supplements, using food stuff instead. 

The functional medicine ones started getting really expensive for me and I even found myself having a hard time swallowing some of the capsules.  I guess that's when I knew......it wasn't going to be the answer to where I was at with illness then.

 

I'd been on the omega 3's fish oil before and thought I couldn't tolerate them, yet have.  And continue using both magnesium and fish oil today.  So, just wanted to share that.  I looked at your beginning, very detailed journal and oh boy......that's a lot of supplements throughout the day.  I did the same for awhile.......so I get it.

 

It will get better EmmsieA.  And you ARE strong enough!  I can see it or hear it or something. 

2 hours ago, EmmsieA said:

Thank you, Shep. I’m able to get the previous brand this afternoon so I will go back to that and see if it makes a difference. 

Im unsure about dividing the doses - usually I’ve taken it at bed time to try and help control the jerks and make me sleep. I thought that clonazepam had a long enough half life that you shouldn’t really get interdose withdrawals? 

......And I know......one would think that.  Yet many do get the interdose W/D from clonazepam.  And maybe the shift will help as far as lifting your mood a bit too.  I mean the benzo's are notorious for some pretty substantial feelings of lows and demotivation, obsessive thinking, etc.  Then you can get on to reductions in the Mirtaz.  And hopefully some relief of the hypnic jerks as well.  I like to think positive.   And I think it's possible.

 

Best, Love, peace, healing, and growth,

mmt

And oh.....I must add, I still see and very much appreciate my GP's support through many, many years now and changes. 

 

Edited October 23, 2018 by manymoretodays

[EmmsieA]

Thank you so much for your reply, @manymoretodays I really appreciate it. Thank you for saying that it will get better and that I am strong enough. I hope so. It can get so very overwhelming at times, especially thinking of the length of time that this could take. I just so desperately want to be back to ‘me’ again and healed. I realise it is a process and no one can tell you how long it will take.

I appreciate the advice to keep things slow and simple. I’ll keep that in mind with the supplements. I’m eating as well as I can with as much nutritional substance as possible. 

Perhaps the spreading out of the clonazepam would help then, I’m not sure but suppose worth a try once hopefully a bit more stable. It doesn’t seem to be doing much for the jerks now, unfortunately. 

I just need so much reassurance at the moment as am in such a terribly frightening place. Thank you to all who give me hope that this will end eventually. Praying continuously for everyone on this challenging journey X 

[Shep]

20 hours ago, EmmsieA said:

I thought that clonazepam had a long enough half life that you shouldn’t really get interdose withdrawals? 

 

Clonazepam's half life is 18 - 50 hours according to the Benzo Equivalency Chart.

 

Depending on how quickly you metabolize it, you may go into withdrawal in between doses if not taken at least twice a day. 

 

If you do decide to split the dose, you would divide it into two parts and move 1/2 the dose back an hour a day. So to get it evenly spaced out 12 hours apart, it would take 12 days. 

 

This kind of gradual move is the easiest on the nervous system.

 

If you need the full dose to sleep at night, you may want to keep the full dose at night and use non-drug coping skills to help with the daytime symptoms. You may want to try the non-drug coping skills first to see if they help but if the daytime symptoms are simply too difficult, then try spacing out the benzo. 

 

 

 

21 hours ago, EmmsieA said:

I’m able to get the previous brand this afternoon so I will go back to that and see if it makes a difference. 

 

 

Please let us know how you're doing with the previous brand. 

 

17 hours ago, EmmsieA said:

I just need so much reassurance at the moment as am in such a terribly frightening place.

 

Meditation for Benzodiazepine and Psychiatric Drug Withdrawal video (32 minutes)

[EmmsieA]

Thank you Shep. I slept last night but no doubt it was because I had been crying ALL day. I am just so terribly frightened. I desperately want to be able to get off these drugs safely and for the Hypnic jerks to go away. Do you think they will? I get so terribly sad about this going on for so long and can’t see an end in sight. Need so much reassurance, I really do. I spoke to Dr David Healey this morning and I will try and see him if my GP can refer me. I’d happily move to Wales if he could help me...

[EmmsieA]

Just doing my log for yesterday and last night: 

 

24th Oct 2018

5:30am woke with anxiety but dozed - a few twitches I’m fingers and toes preventing me from falling back asleep 

8:30am breakfast 

(no supplements today)

11am uncontrollable crying which lasted one hour 

12:45 lunch 

anxiety bad throughout afternoon (mostly related to trauma of what I’ve been through and fear about trying to wean off the drugs and if jerks/sleep will ever get better)

7:30 dinner

8pm took 30mg Mirtazipine, 0.5mg clonazepam (original brand) 

8:15-9:15pm yoga 

9:30 snack

10 relaxing bath 

11:20 asleep until 5:45 - when I woke I had anxiety and small twitches also a kind of ‘chemical’ jitteriness that I have felt several times before over the last month or so) think I managed to fall back asleep for 40minutes or so

 

[EmmsieA]

Not sure if this is needed or helps - but here it is: Log for 25th Oct

 

8am breakfast

8:30 vegan omega 3 supplement 

anxiety and mood better today, felt stronger overall

11:30 yoga 

12:45 lunch 

5pm snack 

Througout the day - minor muscle twitches in random parts of body - but not very noticeable. Probably more because I am hyper vigilant) 

7-9pm attended support group meeting on benzo and antidepressants. Probably felt more anxious and upset post this due to hearing so much suffering - and I haven’t even tapered yet. So terrified about taper)

9pm 30mg Mirtazipine 0.5mg clonazepam (late tonight because of meeting) 

10pm ate dinner (v late!) 

11:30 asleep until about 4:30 then woke, dozed but couldn’t get back to sleep because of anxiety and worry and little twitches 

 

[EmmsieA]

Dear Alto/Shep,

I wondered if you could aid me with planning a dry cut and hold taper of 30mg Mirtazipine using a gram scale? I have the Gemini-20. I want to get prepared for starting the taper on Sunday. 

I have both 15mg tablets and 30mg - I was thinking of trying to drop by 3.75mg (by quartering one of the 25mg tablets) but this is a little over 10%).

I think there is a excel spreadsheet somewhere created by someone very clever, based on converting pill doses to weight, and I could then weigh tablet fragments? Would anyone be able to point me in the right direction and then check my doses for me? 

Thank you so very much in advance.  

[ChessieCat]

Here is SA's topic:  using-a-digital-scale-to-measure-doses

 

And these posts in that topic:

 

using-a-digital-scale-to-measure-doses

 

using-a-digital-scale-to-measure-doses

 

Have a read of them and let us know if you have any questions.