Mirtazapine (Remeron)?

[Autumn]

Anyone on this antidepressant for sleep?

I took it in the past, combining it with Efexor at the time. It did help me sleep then. But apart from that I have horrible experience with antidepressants. As in no effect on mood or being completely emotionally numb, side effects, and horrible withdrawals.

I'm worried about taking it again (seriously, I'm crying about it - and not because I'm depressed).
I've been on sick leave for the past 4 months after a crash. Worst one so far, after 10+ years of this illness.

Gp suggested either this or Trazodone. But I've had a bad reaction to the latter after taking it once in the past. Combining it with Bupropion at the time, which was the possible culprit.

Anyway, I definitely need (deep) sleep and to be able to eat as I have some bad GI issues.
Any thoughts on whether this is a good idea or not?

Thanks

 

[Not dead yet!]

Anyone on this antidepressant for sleep?

I took it in the past, combining it with Efexor at the time. It did help me sleep then. But apart from that I have horrible experience with antidepressants. As in no effect on mood or being completely emotionally numb, side effects, and horrible withdrawals.

I'm worried about taking it again (seriously, I'm crying about it - and not because I'm depressed).
I've been on sick leave for the past 4 months after a crash. Worst one so far, after 10+ years of this illness.

Gp suggested either this or Trazodone. But I've had a bad reaction to the latter after taking it once in the past. Combining it with Bupropion at the time, which was the possible culprit.

Anyway, I definitely need (deep) sleep and to be able to eat as I have some bad GI issues.
Any thoughts on whether this is a good idea or not?

Thanks

No antidepressants work on me at all, genetic issue. One of them, Celexa, is tolerable if I ramp it up over a month and only in maximum 25mg doses, total dose, which has to be divided as well. Not worth the effort.
But I have a slightly controversial suggestion: the gut issues can sometimes temporarily go away with a carnivore diet. As in meat and water, nothing else. No FODMAPS, no anti-nutrients from plants, no fiber, pure protein and fat. Or at least to avoid FODMAPS and have much more meat than usual. It's kind of cultish, but it did work for me at times. Here's a respectable doctor talking about it (video/audio): https://www.biohackerslab.com/ep19-dr-shawn-baker/

Be aware that not all carnivore websites offer foods I would consider "healthy" there are far too many fake bread recipes out there which I don't consider good for health. A nice meatloaf is healthier than powdered pork rind flour. Too weird.

There are some real life stories here: https://zerocarbzen.com/tag/carnivore/

I haven't committed to a fully carnivore diet. Just not convinced it's a permanent solution. But it does help and I can see which foods cause me allergies more easily now.

 

[EddieB]

So sorry you’re down, going through a bad crash myself.

My Gastrointest talked me into going on mirt about 6 months ago. I too have GI issues as a major part of my problem, and wasn’t able to sleep more than 4 or 5 hours a night. He believes my CNS/vagus nerve is the root cause of my reflux and IBS; I’m not so sure.

I was terrified because I’d read of so many bad/mixed reviews on mirt. The first few days were awful, as it set off my cfs/fatigue/gastric issues and made them much worse. Gradually it subsided and actually I had several weeks of feeling somewhat better with better energy and less symptoms. Then for whatever reason, it just stopped working. Fatigue and nausea came back and I’m on the couch ever since.

It’s possible that I would have felt better regardless, as that happens every once and a while. The doctor insists it’s helping and needs more time to work. What bothers me is why it made all my symptoms so much worse initially. Btw, I began by cutting pills to 3.5mg to start off. I’m at 22.5mg now. I do sleep ok with it, some crazy dreams at first, not bad now. But it does cause restless leg for me. It is a strange medicine, higher doses are known to cause insomnia. Not really noticing any anti depressant/mood changes at this dose. It did make me hungry at first, but that too has worn off, normal appetite now.

So I’m continuing to take it for now to appease the doctor, but I don’t think it’s
much help. At least it doesn’t seem to be hurting anything and I’m sleeping. If you do try it again, I’d start at a very low dose and only use what you need for sleep. Again, lower doses are more sedative. If I go off it at some point, I’ll cut pills and taper slowly.

My focus right now, is turning toward gut/virus/micro biome. I recently found out about Dr Chia and the research he is doing, and believe that for some of us with cfs/gastrointestinal issues, this could be where part of the problem lies. My illness started with what felt like a stomach virus. Trying to get one of my doctors to work with him remote, since there is no way I could get to him.

Not sleeping makes everything worse. Hope you get some rest!
E.

 

[Autumn]

Thanks for the replies!

Not sleeping or eating makes everything worse indeed.

I decided to give it another go. Starting at 15mg at night. Gave me a headache, restless legs, and some agitation the first 2 days. I split the tablet to 7.5mg which is better. Still gives me a bit of a headache. Sleep seems somewhat better (lots of dreaming though?) and I'm still awake for about an hour before actually falling asleep. It does give me more appetite. My nausea is gone, which definitely is a plus.

Mirtazapine does have a weird profile with the sedation a lower doses.
Anyway, so far so good, but not planning to be on this forever.
I'm worried about this apparent trend to take these sort of meds for life. Unless it would be an actual cure.

 

[Mandalorian]

Autumn i have find help for sleeping problems with lemon balm, liposomal melatonin, l-theanine .

Liposomal melatonin is a detox and antioxidant and also calms gut symptoms too...currently taking various dosages,since it`s not just for sleep but also detoxing brain. It can give headache in the morning or some brain fog, but i think it is not the melatonin itself, but simply detox symptoms as toxins like aluminium start moving , 6-8 mg has been my usual lately .

Magnesium malate also, becouse aluminium is one thing that causes insomnia, and the malic acid chelate it plus gives magnesium which is also important for relaxitation,sleep .

 

[EddieB]

Autumn,
Any updates on how you’re getting on with mirtazapine?
I’m going to try reducing my dose, from 22.5 to 15. I’ve been going over my notes and trying to figure out why my fatigue has gotten so much worse.

I did pretty good on 15mg. But it seems My energy really started downhill about 8 weeks after going up to 22.5. They say it takes 6-8 weeks for it to take full effect. It’s a strange med and has different effects for everyone.

I’ve also had some dry skin/rashes, restless leg, slowed digestion and other odd symptoms that could be related. Other than ok sleep, I don’t see any benefits from it. We’ll see what happens.

 

[Autumn]

Autumn,
Any updates on how you’re getting on with mirtazapine?
I’m going to try reducing my dose, from 22.5 to 15. I’ve been going over my notes and trying to figure out why my fatigue has gotten so much worse.

I did pretty good on 15mg. But it seems My energy really started downhill about 8 weeks after going up to 22.5. They say it takes 6-8 weeks for it to take full effect. It’s a strange med and has different effects for everyone.

I’ve also had some dry skin/rashes, restless leg, slowed digestion and other odd symptoms that could be related. Other than ok sleep, I don’t see any benefits from it. We’ll see what happens.

Hi EddieB,

Well, I only took it for one month.
I was sleeping I guess. In fact, I felt like I was dreaming (at times restlessly) a lot more. Not sure about getting more deep sleep. And the nausea was gone. It definitely made me eat. But it took too long to wear off during the day. I felt I was only waking up properly past mid day and after a few cups of coffee.
I decided to go off it which gave me worse fatigue for a week and also made me crash a bit. Bad sensory overload. I'd say, go slow with the tapering.

If I think about it:
- 15 mg: sleep ok though lots of dreaming, nausea is gone, restless legs (which doesn't help sleep onset), does give me energy in the afternoon though agitated, somewhat less pain (?), headaches
- 7,5 mg: sleep though lots of dreaming, nausea gone but annoying food/sugar cravings, restless legs (less than on 15mg), some water retention

I guess I could say it helped a bit but it mostly feels fake if that makes sense? I know lots of people would say 'who care if it's fake, if it makes you feel better' but I'm worried about this false sense of 'energy' which makes me do things and then makes me crash. After one week of mirtazapine I actually thought 'awesome, I'll be going to work next month' but I felt like I was doing things on this agitated sort of energy while my body/brain can't actually handle it. I went through antidepressant withdrawal twice after one year of treatment on both occasions. It was terrible. Coming off mirtazapine after only one month now already feels rough.

My gp asked me to try 25 mg of Trazodone at night. Only took it once so far but it kept me up most of the night. Go figure?
So I haven't been taking anything for the past 10 days. I was doing okay and my sleep wasn't too bad. I sort of took a break from it all and went away for a few days. It was okay, sleep and eating weren't too bad, was able to do some walking. But I've been having a bit of a crash again these past 3 days. Bad fatigue, headache, pain, nausea in the morning.

Not sure what to do...

Keep me posted!

 

[EddieB]

I get what you mean about feeling a “fake” improvement. Totally makes sense now. It made me so sick initially, then that passed and I did have energy, but it was kind of a agitated, wired energy. Maybe it gave me a false sense of wellness and I burned out?

I was told to keep increasing the dose slowly up to 30mg. Then around last Sept, I started downhill, so I dropped back to 22.5. Kept feeling weaker and weaker, until totally crashed/ housebound. Couldn’t figure out why, no changes otherwise.

It never really helped the nausea. Did have more appetite at first, but it passed. I sleep, but with the crazy dreams, not sure it’s quality. I was told over and over, give it time; I think it’s had enough...

I dropped back to 15mg, 3 days ago, and I seem to have a slight bit more energy. Too soon to tell, but I think I’m going stay at 15 a while, then continue to slowly reducing the dose and see what happens. So confusing, these meds may make us feel better short term, but eventually they poop out. I had a similar go with amitriptyline a few years ago.

Good thing you weren’t on it too long.
Hope your crash passes soon...

 

[Autumn]

EddieB,
How've you been these past few weeks? Let me know

 

[EddieB]

Thanks for asking. In a word, confused...
I’d been at 15 mirt, then I dropped it down to 7.5 (15 cut in half) last week. Seemed ok at first, but now I’m having way more nausea/upset stomach/silent reflux symptoms. Could be coincidence, so hard to tell. Sleep has been ok throughout, thankfully.

Two reasons I wanted to try to reduce the dose, number one I was having trouble digesting food, seemed like everything I ate just sat. Number two, my normally low energy had gone to no energy, just walking across the house was getting impossible. Both listed as possible mirt side effects. Both seemed to improve slightly by going down to 15. Still house bound, but wasn’t quite as miserable till the nausea hit.

So I guess I’ll go back to the 15 and see if the stomach improves. This is an unpredictable med, different doses can trigger different results. My symptoms had seemed to be much improved last year at 22.5, right up till they weren’t. I firmly believe there is neurological aspect to ME/CFS, and these meds may have a place, but not indefinitely.

Still waiting for blood test results from ARUB/Cambridge for enterovirus.

How are you getting on?

 

[EddieB]

EddieB,
How've you been these past few weeks? Let me know

Can you let me know how your doing?

I’m on my second attempt to get off this stuff.

 

[Autumn]

Can you let me know how your doing?

I’m on my second attempt to get off this stuff.

Hi EddieB,

Sorry for the delay. Lots of ups and downs. I keep on crashing. And now with the Covid-19 I'm trying to get my admin done in time for my sick leave. And with no physical therapy etc. trying to keep my pain levels manageable.
My last blood work showed some viral infection and allergy (had some rash). So I'm not sure what's what. Had lots of hold/cold feelings, headaches, brain fog, sweating,... Better now.
I've been trying magnesium at night. Not much of a difference. Sleep's been up and down. Also vitamin D (as I was somewhat deficient) but it feels like it's making me more tired (?)
Trying to stay as active as possible but hard to find a balance. Even when things feel relatively 'good' in the moment I still crash afterwards.

Any luck on tapering the Mirtazapine further?

Stay safe,
Autumn

 

[EddieB]

Sorry you’re have a rough time.

Sure sounds like you had a virus. Suppose they couldn’t tell you what it was? Try and support your immune anyway possible (berberine, elderberry, viracid, etc) so it doesn’t come back.

What type of magnesium are you taking? I’m finding there are several and some are better than others. The best two so far seem to be magnesium threonate or magnesium glycinate. The glycinate makes me feel sick, so Im taking the threonate.
Many of the other types just go through you with minimum absorption. Can’t say that I feel any better, but the labs tests are good. Do your research on vit D, I think it can compete with other minerals, which can make you tired. It’s a balance that doctors don’t seem to know much about.

The mirtazapine is awful. I went from 22.5mg to 15 for a month, 15 down to 7.5 for 10 days. Then tried to drop to 3.5 and everything fell apart. Horrible nausea and diarrhea, every CFS symptom 10 times worse. Went back up to 7.5 last night and things finally calmed down a little. This stuff is incredibly powerful.

I’m really not sure what to do next, but I’m gonna be very careful about reducing from here. I’ve been on it for 10 months, it did seem like it was helping a little at one point, but didn’t last. I think it may be able to mask symptoms but not indefinitely.
I know if I get off it completely the insomnia will come back, but there has to be other things, less dependent, that can help with that.

Hoping you feel enter soon, E.

 

[Autumn]

Hi E,

Just checking in...
Feeling somewhat better today. I quit both the magnesium (glycinate) en vit D. I'll wait until I feel things have stabilised a bit. Supplements are weird. I noticed I tend to feel worse on them and I wonder why that is.

Sorry to hear you're having such a hard time coming of the Mirtazapine. Any chance you could talk to your doctor again about it?

Hang in there,
Autumn

 

[EddieB]

Hi there,
Still going. Down to about 5mg a day. I did talk to my GP and she agreed it was time to get off it. She outlined a tapering schedule, pretty close to what I already had going.

Interesting you brought up the magnesium. I am still having bad leg/thigh pain and tremors that I had attributed to the mirtazapine. I’m stopping the magnesium for a couple day just to see if it may be the cause. I had recently switched from mag asporitate to mag threonate. Tried mag glycinate but it made me so sick.

I also got the GP to order blood tests for amino acids. Something I hadn’t looked into. I’ve read where some have found big deficiencies. I suspect I have low GABA.
It would explain the severe anxiety attacks I have at times.

Otherwise still bed/housebound, hoping some energy will return once the mirtazapine is gone. Stomach pain, worsened reflux, diarrhea, all side known effects of the withdrawal. Somewhat comforting.

What were the viruses found in your labs? Glad your doing a little better?!

 

[Autumn]

Good to hear you could talk to your gp and she did the tapering schedule! I know the withdrawal is hard. I really hope things look up for you!
Testing for amino acids, interesting... Is there like a complete test (if that's even possible? ) or just some? Let me know how things turn out.
My gp didn't order extra tests for the viral and allergy stuff. He just wanted to wait it out for now.
Keep me posted!

 

[EddieB]

Update,
Got the amino acids tests back. All within normal ranges, so nothing there.

Still tapering the mirtazapine, trying to go to 3.5mg tonight. We’ll see.

Had a phone visit with the immunologist. She thinks my troubles may be caused by neurological damage from a past infection (I do have super high EBV antibodies) and low levels of GABA. This could cause vagus nerve problems, and explains the digestive symptoms, fatigue, and fits with classic CFS. Mirtazapine can affect/increase GABA, which may be why it worked for a little while.

I’ve also suffered for years from post fight/flight panic attacks. It’s like whatever recovery system I have is very broken. From what I read, this correlates also to low GABA.

Not sure what all this means yet, I’ll have to get clear of the mirtazapine first, then decide what to try next.

 

[Autumn]

Hey Eddie,
Tapering going okay?

Was wondering how high your EBV antibodies were? Is that EBNA then? Does it matter much how high/low it is?
How did your GABA levels get tested? Is this just a blood test?

Take care,
A.

 

[EddieB]

Hi Autumn,
Tapering is ok, I’m at 1.5mg a night, or there about, it’s a 1/4 of a 7.5mg pill. If I don’t take it, I can’t sleep, so just riding along for now. Side effects have calmed down, but digestion is still a mess. I can’t tell what is affecting what.

My EBVNA IgG is >800. It’s high/abnormal, but these numbers don’t seem to mean much to most doctors. It simply means “past infection”, which to my knowledge I’ve never had classic mono. But in our world of cfs, it’s a potential source of the neurological damage that may be responsible for our crazy symptoms.

I did an amino acids profile test (blood). Kinda disappointed, for GABA it just showed <3200, but no low level given.

 

[EddieB]

Hi Autumn,
Just checking how your doing?