KarateKat: Mirtazapine Fast Taper & Reinstatement advice

[KarateKat]

I was prescribed 15mg Mirtazapine in May 2019 for sleep and anxiety following a diagnosis of PVFS (now ME/CFS) in Jan 19. Developed tinnitus 4 weeks later and advised to come off by MD. Both the MD and pharmacist advised that what I now know as a FT would be ok as I was only taking the drug for almost 3 months. In fact, my MD said that Mirtazapine would be ok to just stop. Dropped from 15mg to 0 in about 4 weeks and unsurprisingly got the whole raft of symptoms. The worst was my inability to sleep and brain tremors that would come on as I was just falling asleep and if I did fall asleep would wake me at every sleep cycle. I went for some nights with no sleep and became suicidal. 

Reinstated after 16 days, under the advice of my MD  at 3.75mg for 2 days, with little improvement, then up to 7.5mg, where I have been for two months. 

 

I have been a heavy meditator since the start of June as part of an ME/CFS recovery program, called ANS Rewire (highly recommended), which includes brain training. I am taking a supplement regime as part of this protocol, I also take melatonin (2mg).

 

Two months on from reinstatement pretty much all withdrawal symptoms have disappeared apart from minor tingling and skin crawling sensations (this could be withdrawal, the drug side affects, or my illness) and the sleep disturbance, and I am seeking advice on whether to up the dose to 11.75mg as suggested by MD.

It has  improved a great deal and I am getting a number of hours a night. Initially the brain tremor would be very intense, making my whole body tingle/tremor and my tinnitus gets very loud, stopping me from falling asleep and waking me on each sleep cycle (perhaps on REM part as I can always remember dreams and never could prior). After a bit, it became much milder and less frequent, still stopping me falling asleep and waking me, but feeling more like an odd sensation. More recently it appears to have worsened and when I wake my heart is pounding. I think I wake on each sleep cycle and after about 4.30 am, its constant as a fall asleep and will happen multiple times until waking. 

 

Oddly, I have noticed that on days where my meditation feels particularly deep, the night is much worse and this worries me, because it makes me feel as though there is something wrong with my brain. I also wonder whether having ME/CFS (a dysfunction of the ANS), means that things are harder. 

Anyway, I am thinking of upping the dose to 11.75mg and am seeking advice. 

Also, I wondered if anyone else has experienced that meditation makes symptoms worse? I do go very deep and believe that I have high brain neuroplasticity. 

 

 

 

[KarateKat]

Hi again, having read a bit more on this wonderful site, I think perhaps that i’m experiencing ‘waves’ when my sleep is poorer and that the meditation link is a coincidence. Have given the meditation a rest for a few days and am now experiencing very poor nights again. Would this be linked to cortisol spikes?

Would still like advice on the dose increase. 

Many thanks. 

[Altostrata]

Welcome, Karate.

 

Your nervous system did experience an upset when you went off mirtazapine too fast. It could take more than a couple of months for it to stabilize on reinstatement of 7.5mg August 3. (Please organize the notes in your signature chronologically.)

 

Your meditation might be so effective in calming your nervous system that is it causing a paradoxical reaction in combination with melatonin and mirtazapine. If you are taking 2mg melatonin, I might reduce it to 1mg melatonin.

 

It is also possible that your nervous system has settled down some and 7.5mg mirtazapine is now too much for it, causing a paradoxical reaction later in the night. I'd reduce the melatonin first, see if that helps.

 

You're doing everything right -- thanks very much for the tags and signature and good symptom pattern notes. Please continue to let us know how you're doing.

[KarateKat]

Many thanks Altostrata. I have corrected my signature.

I will follow your advice and reduce the melatonin. I am also taking 440mg of high quality magnesium at bedtime. Do you think this would be worth changing to the morning?

 

So, at this stage, you would not recommend increasing the Mirtazapine?

[KarateKat]

Hi, I took the 1mg melatonin instead of the slow acting 2mg. I don’t think there was any noticeable difference except that I spent more time awake. Still experiencing the episodes of arousal  each sleep cycle. Didn’t get to sleep after 4.0am. I carried out deep relaxation techniques, and whenever I felt on the point of sleep, I was jolted into arousal (pounding heart and anxious feeling in the chest). I am able to control this with 5 deep relaxing breaths.

I started to experience this as soon as I started the fast taper. Initially it was infrequently, but by the end I couldn’t sleep at all. The sensation was much worse ( brain tremor s/zaps and electricity in my body) On reinstatement things slowly improved, with some really good nights. 

While the experience is not as awful as during the taper, the frequency seems to be getting worse. 

 

I do get other symptoms , which also seem to be worse, particularly in the evening. I didn’t mention them before as it’s hard to determine if they are related to the ME/CFS or this withdrawal/reinstatement. I get flu-like symptoms,  deep muscle aches, pains deep in my ears, tingling and pins and needles etc..my instinct is that is is withdrawal related as it feels more like it did during withdrawal. 

 

As part of ANS Rewire program I mentioned earlier, I had already implemented the recommended wellbeing measures (sleep hygiene, no alcohol, caffeine, sugar, gluten, following a whole food anti-inflammatory diet) some months prior, and was starting to recover. 

 

The reinstatement seemed to be working very well for about six weeks, but my experience now seems to be like the withdrawal. This is why my MD has suggested upping the dose. Advice is appreciated.

1. If, as you suggest, I am having a paradoxical reaction, what is the best course of action? 

2. If I up the dose and it has no/negative effect, canI just drop back down to 7.5? This is what the MD has suggested, 

3. Should I try no magnesium at bedtime 

 I have held off the meditation fo a week now and haven’t seen any noticeable improvement so am thinking about restarting as this is a key strategy in my ME/CFS recovery program. 

Thanks in advance.

[Altostrata]

1 minute ago, KarateKat said:

I do get other symptoms , which also seem to be worse, particularly in the evening. I didn’t mention them before as it’s hard to determine if they are related to the ME/CFS or this withdrawal/reinstatement. I get flu-like symptoms,  deep muscle aches, pains deep in my ears, tingling and pins and needles etc..my instinct is that is is withdrawal related as it feels more like it did during withdrawal. 

 

Do these happen at the same time each evening? How long do they last?

 

What times of day do you take each of your drugs, with their dosages?

 

My guess is 7.5mg mirtazapine is a little too high in combination with your meditation. I'd go back to 2mg melatonin and try a reduction of mirtazapine to 7.25mg, see what happens.

[KarateKat]

Many thanks for you prompt reply, very much appreciated.

It's hard to pinpoint about the other symptoms. They are there constantly in varying degrees and start to get worse early evening. I generally feel better in the mornings. 

 

Amlodipine 5mg - 8am

Ubiquinol CoQ10  100mg - 8am

Omega 3  3000g - 8am

Vitamin C - 1000mg - 8am (sometimes throughout the day if high sore throat/glands, on advice from my Integrative DR)

B Complex - 8am (this has a variety of levels)

D-Ribose 5mg - 8am & 4pm

Magnesium - 440mg - 8.45 pm

Melatonin - 2mg (slow release)

Mirtazapine 7.5g - 9.30pm

 

For the reduction, I will need to get some micro-scales and shave a little off. 

I can try without the magnesium tonight. 

 

 

 

 

 

[KarateKat]

Sorry, forgot the zinc, 25 mg 8am. 

This also has Manganese 2mg and B6 10mg, which actually takes my total B6 to 20mg (from the B complex)

[KarateKat]

Hi AltoStrata, I've ordered the scales and will reduce to 7.25 as suggested. 

I'm wondering what the recommended course of action is after that? How long would one typically wait before other adjustments? 

If I feel worse should I go back to 7.5mg, can you advise how long I would wait to see?

 

I recall that the night time reactions started before withdrawel, at about the same time as the tinnitus (albeit in a much milder form). Possibly my CNS was already sensitised because of the illness. I now that people with ME/CFS are very sensitive to medication. I think that this was a much to high dose from the start. 

Many thanks of course. 

[KarateKat]

Hi, still waiting for the scales, should be here on Tuesday. Symptoms getting worse, particularly sleep. I'm now getting the arousal/flight or flight sensations when just relaxing as well as falling asleep and when asleep. Not more than a 2/3 broken hours a night. Getting a bit desperate. 

I would super grateful if someone is able to answer my previous questions please?. 

On ‎11‎/‎9‎/‎2019 at 12:33 PM, KarateKat said:

Hi AltoStrata, I've ordered the scales and will reduce to 7.25 as suggested. 

I'm wondering what the recommended course of action is after that? How long would one typically wait before other adjustments? 

If I feel worse should I go back to 7.5mg, can you advise how long I would wait to see?

 

I'm a newbie at this. Am I correct in understanding that if, as in my case I reinstate and things improve, but then deteriorate after a couple of months, then it means that my dose is too high? Not to low as the DR suggests and that increasing is risky.

 

 

[KarateKat]

My scales arrived and I realised that I could only measure to .x mg (7.2,g or 7.2mg), so I made a solution with 15ml water and dissolved a 15mg tablet. Used a combination of a 5ml and 3ml syringe to get 7.25ml=7.25mg. 

I tested the scales using my halves of the 15mg tablet, which I had been splitting by just manually pressing along the line. I did this several times and found that there is a lot of variability in the weight. Sometimes 8.0mg to 7.0mg. This means that my dosage has been extremely variable from day to day.  I guess this is not helpful?

I have had a prescription done for a compounded solution, which will take several days to make. I will switch to a this then. 

I will monitor this reduction and let you know how it goes. What kind of time frame would I be looking at do you think?

Many thanks

[KarateKat]

I've realised that I was reading the syringe wrong! so instead of 7.25mg I took 6.45mg on the first night. Last night I tried to correct it but have realised I was still off by a bit and took 7.05mg. Tonight will be correct. 

I hope that this won't cause a problem. As I said in the previous post, I think my dose has been very variable all along. So from tonight it will be stable. Sleep has still been disturbed, possible the arousals have been less intense. I will monitor and update. 

Would still appreciate an answer to how long I should hold here?

Many thanks

[KarateKat]

Hi , It's been 9 days on the reduced dose. I made an error to start with the syringe and dropped to low, but corrected to 7.25mg. I have been feeling noticeably better on the lower dose. The arousal/brain tremors during sleep is still happening as frequently, but it is much milder. I am also able to fall asleep now, without getting the arousal. Muscle  and ear pains noticeably less. Just generally better. 

I would like to continue to reduce, as its seems that I am sensitive to the mirtazapine. 

Can you advise on approach that might be appropriate please? I was thinking the BrassMonkey method?

Many thanks

[KarateKat]

 

@Altostrata Is it too soon to start the slow taper after the fast taper? The reduction that you suggested has been beneficial, indicating a paradoxical reaction. 

[Altostrata]

Hi, KarateKat. Apologies for missing your questions.

 

On 11/5/2019 at 9:11 PM, KarateKat said:

I am also taking 440mg of high quality magnesium at bedtime.

 

Magnesium is best taken in smaller

 

On 11/20/2019 at 4:32 PM, KarateKat said:

Hi , It's been 9 days on the reduced dose. I made an error to start with the syringe and dropped to low, but corrected to 7.25mg. I have been feeling noticeably better on the lower dose. The arousal/brain tremors during sleep is still happening as frequently, but it is much milder. I am also able to fall asleep now, without getting the arousal. Muscle  and ear pains noticeably less. Just generally better. 

I would like to continue to reduce, as its seems that I am sensitive to the mirtazapine. 

Can you advise on approach that might be appropriate please? I was thinking the BrassMonkey method?

Many thanks

 

This sounds promising.

 

The startling you experience when relaxing into sleep is a paradoxical reaction. Your nervous system is afraid you're going unconscious and is waking you up.

 

Being paradoxical, this may be caused by too much sleepy-making: Too much melatonin, too much mirtazapine, too effective meditation, the advent of your natural sleep cycle, or a combination of all of them. Amlodipine might be involved, too, what time of day do you take it?

 

Reduction of mirtazapine seems to have reduced the paradoxical reaction. It also sounds like you had adverse reactions from mirtazapine. It may take some time for your nervous system to settle down. After 9 days, what is your sleep pattern? Has it been getting better or worse over the last week?

[KarateKat]

Thanks again @Altostrata It’s now 13 days,   Sleep pattern is pretty much the same, but the arousals have been less intense. I have been able to fall asleep fine, which is an improvement. I sleep for a couple of cycles, am waken , which is repeated every cycle until 4.0 am, after that it is much more disturbed. I am woken after very short intervals, or am stopped just as I fall asleep.  

 

The last 2-3 days have seen my symptoms worsen again, at first very slight, but more intense now. Muscle pains, flu like symptoms, crawling skin and the sleep disturbances. It’s now 5 am in Australia. This has been the worse night since the drop. 

I would really appreciate some advice on the next steps. Many thanks as always. 

 

[Altostrata]

How much melatonin are you taking now, at what time of day? What is your sleep schedule?

 

When are you taking magnesium, at what dosages?

[KarateKat]

@Altostrata, I take 440mg of magnesium at 8.45pm, which is when I take the 2mg melatonin, (it’s a slow release one, prescribed by the Dr) the mirtazapine at 9.30pm. I have implemented all the recommended good sleep hygiene approaches a long time ago (no electronics, dim lights, etc) get ready for bed at 8.30 ad go to bed when sleepy, normally between 9.45 and 10. Get up between 6.30 and 7.30 am

 

Earlier  we tried reducing the  melatonin to 1mg, which made it worse. I also tried taking only 220mg magnesium , this too seemed to make the sleep worse.  I ended up getting up later and taking the second magnesium tablet. 

I’m confused as to  whether the recent increase in symptoms after is withdrawal from the .25mg drop or means I need to drop again. 

[KarateKat]

BTW, the same thing happens if I try to have a nap during the day. Although very tired, I get aroused as my body starts to fall asleep. I literally can’t fall asleep during the day. 

[Altostrata]

Yes, the startling is a very familiar symptom in withdrawal syndrome. It should lessen as time goes by.

 

I would hold for a while where you are. You might coincidentally be going through a wave. See The Windows and Waves Pattern of Stabilization

[KarateKat]

Many thanks. Is it best to hold, even though we think I’m having a paradoxical reaction? It’s all so confusing!

[KarateKat]

I had thought it might be a wave. I had noted that this elevation in symptoms is less than the last time, which I take as positive and a sign that I am sensitive to the drug. 

[KarateKat]

Hello, it’s been a while. I’m nearly at the end of a four and a half year journey tapering mitazapine, after initial fast taper and severe withdrawal.  Current dose is 0.3 mg, still taping slowly, very mild withdrawal symptoms now, mostly related to sleep. Otherwise in very good health. 

In the middle of treatment for small intestinal bacterial overgrowth (SIBO), and I’ve been prescribed pucalopride as a prokinetic. I am very wary as it is a serotonin 5HT4 receptor. There is also some research showing it can help depression. 
 

After vowing never to touch anything that affects the nervous system again,  do you  have any advice about this drug and it’s safety and also it’s impact on my currently withdrawal please?

thank you. 

[getofflex]

Hello Kate.  Please do not create new topics when you have questions specific to your personal situation.  Instead, please use your intro thread.  This eliminates confusion and duplication of effort.  I have merged the two topics.  

 

I'm not familiar with pucalopride.  I did a site search, and there is no info on our site about that.  

 

Personally, if it were me, I would try a natural remedy first.  Probiotics can help to correct bacterial overgrowth.  When our son was a baby, he had this problem, and we used Culturelle. It helped him a lot.  It has healthy bacteria, and this helped to reduce the harmful bacterial overgrowth in his system, and his symptoms cleared up.  There are other probiotics available as well.  

 

I'm really glad to hear that your taper is going so well.  I would not want to jeopardize that.  Yes, taking a drug that affects serotonin could be risky.