359 replies to this topic

[mimi10]

I am currently at a 1/4 pill dose of mirtazapine, about a 1.85 mg dose.  Today is day 4 on that dose.  Things have been uncomfortable with headache, nausea, light jitteriness and not so good sleep, but tolerable.  Seems like things start on day 3 and get more intense day to day for about 4 additional days before getting a little better.  Last night sleep was down to about  4 hours again, hope it’s withdrawal and not the return of the insomnia that caused me to go on mirtazapine.  I’m thinking that maybe next week I will try to go to zero if things start to settle.

frog, if you’re around how are you doing trying to get off the seroquel?  I hope you’re doing ok and finding improvement and withdrawal is not too bad.

hat and iUN, I hope you guys are managing well , I’ve missed you around here, you guys are my voices of reason and I appreciate your input on everything.  Whenever I feel alone in this journey it’s nice to come here and find compassion and empathy, you guys are the best.

[fishinghat]

I am doing great Mimi. Thanks for asking. You are doing OK as well given the weaning you are doing. Don't rush things too much.

[frog]

You're doing great Mimi!

Agreed that there is no rush to go to zero. It's better to stay longer on the same dose than to have to go back so don't feel like you need to stop until you're ready. Also, my insomnia doc told me to buy some super low dose melatonin (i can give you the amazon link if you want) to take when I got down to 0. It doesn't really do all that much but it can be psychologically hard to stop taking a medication completely even if you are going from 1/4 of a pill to nothing because you interrupt the habit of taking something before bed. I didn't end up needing it, but thought it was a great idea. 

 

As for my Seroquel I haven't taken any in a couple of weeks

My sleep has been kind of all over the place but I'm pretty confident that this is related to the big increase of anxiety I've been experiencing in general. It's hard to get good sleep when your body feels some presence of threat, no matter how irrational. But even despite that, I have been falling asleep without TOO much trouble. Now it's the staying asleep that's been more challenging so I'm trying to reduce the amount of stressful stimulus at nighttime. Watching something kind of boring on TV, no social media, etc. Considering that I was on seroquel for so long because I didn't think I could fall asleep on my own, I still feel like great progress has been made. Also I'm finding that during these fitful sleep nights, the daily sleep log I've been keeping during CBT has been helping. It makes you add up the amt of time you slept even if you woke up during the night and it's made me realize that I'm still sleeping in total about 6.5 hours on average which is... acceptable. Without the log as proof I probably would have said I slept like 3 or 4 hours. Funny how faulty our minds can be

[mimi10]

Frog, so glad to see you’re done with the seroquel and doing better.  I actually bought some low dose liquid melatonin that hat recommended, didn’t seem to help me too much and gave me a headache, but times are different now so I won’t hesitate to try it again.  I wear a Fitbit and it keeps a sleep log for me and graphs out my sleep during the night and analyzes it and breaks it down between light, rem, deep and restless and I totally agree with you that I have nights where I would say I thought I’d only slept 2 or 3 hours but checking the Fitbit app I would see it was more like 5.  My sleep is kind of all over the place too but I’m certain withdrawal is playing a part and I think things will improve as I move further away from the mirtazapine.  I’m sorry to hear anxiety is bothering you some again but I’m sure you’ll be able to get that under control, remember it’s just anxiety, try embracing it for what it is and then let it go.  Again, I’m glad you’re doing well.

[frog]

Per my insomnia doc, melatonin should really only be used to gradually change your sleep/wake times like in the case of jet lag or if let's say you were used to waking up at 8am and you were starting a new job next week that required you to get up at 5am, you could use melatonin to help your body adapt to the new sleep/wake cycle. It just helps to encourage your body to produce more melatonin naturally (and as a result you can actually habituate to it). He said it really shouldn't be used as a sleep aid backup. He only suggested it for coming off meds because it allows you to mentally/emotionally adjust to the idea of no longer being on meds while taking... essentially a placebo. 

 

Looking through my log with him, I was adamant that my sleep was really bad the last couple of weeks (waking up more in the middle of the night, took a little longer to fall asleep, waking up earlier) but his assessment was that while yes that was somewhat true, on average my sleep was only slightly "worse" than when I was on Seroquel and he felt fairly confident that that was because of no longer being on medication. Medicated sleep is very different than natural sleep because it makes you very groggy so even though the Seroquel wasn't doing a ton for me, it was still doing something. 

 

Essentially his biggest message is just the importance of standardizing and sticking to sleep/wake times every single day and not 'chasing' sleep. Regardless of how you sleep night to night, don't get out of bed until your set wake time (even if you wake up earlier) and don't go to bed earlier than your set bedtime

 

Anywho this was the Melatonin he recommended: https://www.amazon.c...1?ie=UTF8&psc=1

Out of stock currently but to give you an idea. Only 300 micrograms. Super crazy how high of concentration most melatonin products on the market are in comparison. Per my doc those high concentrations just make you super groggy so perhaps that's why people think they are helping

[fishinghat]

Well that certainly goes against all the medical research and what my drs have told me but that is OK. I noticed the melatonin dose he recommended was 300 mcg which is the same as 0.3 mg. That is roughly the same as my low dose sublingual (about 0.2 mg). Find what works for you and stick with it. His recommendation for a set wake sleep time is one of the standard suggestions in the ebook and I fully agree. Lighting in the evening is equally important as well.

[frog]

I might have misunderstood him. Either way that amount shouldn't be harmful to take, whether it works or not

[mimi10]

It has been 10 days on 1/4 pill of mirtazapine, a dose of about 1.875mg.  Things have been tolerable but for the past couple of nights, usually starting around 3 am I am awakened with tingly vibrations running up and down the lower part of my spinal cord.  I am wondering if these are from withdrawal and if anyone has any experience with them as to how long they might last.  They are very annoying and keep me awake.  They are there sometimes during the day as well but don’t bother me as much when I am awake and moving about.  The nighttime ones are very annoying because I cant sleep through them so for the past few nights I’ve been going to sleep about 10 and the vibrations wake me up by 3 and then I can’t get back to sleep.  Any advice would be much appreciated.  I am thinking about just dropping the remaining 1.875 dose tonight.

[fishinghat]

That is a new one for me. Don't know what to make of it. Really don't have any suggestions. Sorry

[frog]

That's strange that it wakes you up at a specific time. If you went to bed at midnight would you still wake up at 3am with them? 

[mimi10]

It’s always in the early morning hours sometimes its as early as 2 but not usually later than 3, doesn’t matter whether I go to sleep at 930, 10 or 1030, haven’t been up later than that in quite a while since I rarely sleep past 4am. I kind of feel it must be withdrawal since I’ve not experienced it before.  I feel them sometimes during the day but can distract away from them, hard to do at night.  I am hopeful that it will go away with time.  I keep telling myself this along with other things are related to withdrawal because I didn’t have any of them prior to going on these drugs in January, I am just hoping to feel normal again soon. 
we are actually at my brother in laws place at the beach for a mini vacay, thought it would be nice to get away a couple days but it’s been frustrating, I either feel nauseous or jittery or fatigued, foggy, not myself at all.  I’m still going to try to stop the remaining mirtazapine tonight and hope things don’t get worse and hoping to start healing and feeling more like myself.

[fishinghat]

Hey Mimi, what time of day have you been taking your mirtazapine?

[mimi10]

I usually take it about 9pm

[mimi10]

Last night I did not take any, going to attempt getting off, hold some good thoughts 

[fishinghat]

If you have been taking it around 9 PM and this symptom has been occuring around 2 AM to 3 AM then that would be when the mirtazapine is at or near its highest blood levels. That would make me think it is not withdrawal but....

 

I hope coming off all the way helps.

[mimi10]

One week off mirtazapine and things are tough, nausea, headaches, tinnitus, jitters and terrible insomnia.  I fall asleep around 10 and on a good night I might sleep until 3am but the past 2 nights it has been asleep about 10 and up at 130am and last night was worst of all, falling asleep about 1030 but have been up since midnight.  Trying to wait this out and hoping to see things get better but if the insomnia keeps going on I may have to just go back on the mirtazapine.  The insomnia is brutal because with only a couple hours sleep I don’t feel like going anywhere or doing anything and as tired as I am i just cannot sleep during the day, have never been able to nap since chemo.  The bad insomnia, sleeping only 2 hours a night is what drove me to the mirtazapine to start with so maybe this is just a return of the insomnia and not withdrawal but I’m going to try to give it at least one more week to see if things improve.

[mimi10]

This is not going so well.  Two hours sleep night before last and zero last night.  Nausea is ramped up as well.  Trying to hang in there and tough it out, any thoughts or suggestions.

[fishinghat]

Any form of ginger for the nausea. What other  symptoms do you have besides the nausea and insomnia?

 

Hang in there, it should get better soon.

[mimi10]

Headache, responds to Tylenol.  Sweats especially at night. Tinnitus, which goes up and down in volume but has always been present since chemo just not as loud.  Nausea, just having ginger ale and a couple saltines, and the insomnia beast, tried the sublingual melatonin about 2 last night when I still hadn’t fallen asleep but didn’t help. At least for today the jitters are leaving me alone.  Thanks for the help, hat, much appreciated.  I have trazodone and also some mirtazapine left but don’t want to have to resort to either, at least not now.  Trying to hang tough but it sure isn’t easy.  Perhaps tomorrow will be better.  Thanks again, hat, don’t know what I’d do without your wise council.

[fishinghat]

Oh mimi, so sorry you are going through this. There are other things for insomnia in the ebook but I am afraid they will be of little help as they have minimal effect. I forget, have you tried antihistamines like Benadryl?

[mimi10]

Benadryl has always made me feel hyper and wired.  Last night was not so good either, after being up for almost 48 hours straight I fell asleep around 930 but woke up at 10 from a panic attack, which was a first for me.  I got up and walked around for a bit, tried some deep breathing and tried lying back down about 30 minutes later.  Could not fall asleep after that so out of desperation took a trazodone about 1130 and managed to fall asleep about midnight and slept til 3.  The lack of sleep is really getting to me but I am trying to wait this out but am starting to think this is return of my insomnia that the mirtazapine was helping.  I just don’t want to have to go through all this torture to have to go back on mirtazapine anyway.  I m also starting to feel a hypersensitivity to normal body functions like breathing, swallowing and heart beats which I have never experienced before.  I don’t know if this is all part of withdrawal and if it is when I should expect o see some improvement in symptoms.  It’s now 10 days off and things do not seem to be improving, if anything they seem to be getting worse, particularly the sleep.  But other than insomnia I didn’t have any of these other things before I started on these drugs.  I don’t want to ask my pcp about what’s going on because he says mirtazapine doesn’t have a withdrawal, has never had any patients have trouble stopping it.

[fishinghat]

Prayers are said for you Mimi.   The "hypersensitivity to normal body functions" is common during bad withdrawal. 

[mimi10]

Oh hat, what do I do.  It seems anxiety is taking it’s turn today, been feeling jittery all morning. Do I continue to try to hang on until things get better, am I looking at weeks or months.  Do I reinstate and hope that stabilizes things and then try to get off again.  My instincts are to try to hang in there and take it a day at a time but the no sleep is very difficult.  Thanks for you prayers, I appreciate them.  

[fishinghat]

I wouldn' thnk it would last more than 2 to 4 more weeks but that is just a guess. Is the mirtazapine in capsule or tablet form?

[frog]

Mimi I'm not super familiar with the drugs you take for sleep, but I was taking Seroquel for insomnia that developed from anxiety. At high doses it's used to treat bipolar disorder, at low doses it's basically a sedative that puts you to sleep. With that said, if the reason you're not sleeping is because of anxiety it won't be quite as helpful since it'll wear off after a while and your anxiety will probably wake you up then. While I did taper it down just out of an abundance of caution, at the low dose I think the worst thing that happens if you stop is you might experience some rebound insomnia as you adjust to sleeping normally vs being medicated to sleep (a very different feeling). With that said, it sounds like your anxiety is probably what's preventing you from sleeping Are you doing or taking anything to help reduce your anxiety during the day/evening so you feel more relaxed at bedtime? 

[mimi10]

Hat, the mirtazapine I was taking is a very small pill, maybe the size of a baby aspirin.

frog, I’ve never really felt any anxiety, I was put on these meds for insomnia.  The only time I feel anxiety is when drug withdrawal is happening.  My pcp felt that when the insomnia started it must have been anxiety driven even though I told him I wasn’t feeling anxious just couldn’t sleep for very long, very early awakenings.  When I saw my gi doc six weeks after having diverticulosis and c diff, he felt that the insomnia was caused by the illnesses and the antibiotics I was on to treat them, something about a gut/brain axis issue and the only things would be time for my gut to heal and settle down.  However in the meantime my pcp had started me on cymbalta to help with the insomnia which he felt may have been anxiety driven, and chose cymbalta because of the nerve pain I’ve had since chemo hoping it would help that as well.  Insomnia just got worse with the cymbalta which I then tapered off of and pcp replaced it with mirtazapine.  My dose was only 7.5 which is the off label dose for insomnia, for anxiety/depression the dose is usually 30 or 45.  The mirtazapine helped with sleep but left me very fatigued and foggy headed all day long so pcp felt we could try going up to 15mg which he said is less sedating or get off and hope sleep had been restored, we elected to try getting off.  He told me since it was a low dose and only 3 months I could just stop but when I pushed him about it he said I could taper off if I wanted to go slower but recommended cutting pill in half for two weeks and then stop but instead I went to 3/4 pill for one week or so, then 1/2, then 1/4 and then off. Never felt too much in the way of withdrawal until 4 days after going off completely. Most times when I wake back up after a few hours of sleep I don’t feel anxiety,I’m usuallly relaxed, tired and comfortable and can’t figure out why I can’t sleep. So I’m not sure if anxiety is driving the insomnia, I’m more inclined to think it’s withdrawal but it’s wicked.  I am truly confused and don’t know what to think or do, hoping to just give it a little more time and see if things improve on their own.  Thanks for the input though, always appreciated.

[fishinghat]

I agree it is probably withdrawal causing the anxiety. 

 

What was onb my mind was to crush the tablet and take a very small amount in order to ease the symptoms but having said that it may only reduce the anxiety and not help the sleep. Just a thought.

[mimi10]

Bless you hat, you are truly amazing.  The help you provide is so valuable.  You have provided so much support and encouragement to me, I want you to know how greatly appreciated it is.  I will keep that idea in mind, I actually have some of the little chips that are 1/4 of the pill, so a 1.875 dose, do you thinks that’s ok or I could file it down more. Is your guesstimate of 4 to 6 weeks from now or when I stopped the drug, been 10 days now, still hanging in there.  You have taught me much about the kindness of strangers, even though I don’t think of you as a stranger anymore. 

I have learned during this whole experience how crippling anxiety can be, some things until you experience you don’t fully understand.  In fact, yesterday when I was volunteering at the senior center I sought out a lady I know there who has a 50 year old son who has suffered with depression and anxiety just about his entire adult life and I expressed to her that she needed to be kinder and more compassionate and sympathetic to what he goes through.  She is always talking about him being lazy, not holding down a job for very long and being a complainer.  I tried to explain to her than now that I have experienced probably a very tiny portion of what he goes through how difficult things must be for him and he could probably use some encouragement and support.  It’s one of the reasons I try to do most of my whining here on the forum, after a couple weeks no one really wants to hear about it anymore.  I am lucky to have a really close cousin, six weeks younger than me, who is amazing.  She is coming over today and we are going to go spend some time in a garden over in another county, just some relaxing time.  I also had a friend at the center who is a retired nurse and spent some time in mental health units and she is always pulling me aside and asking how things are going and she is also veryunderstanding as she has seen a lot first hand.  She has done some pressure point massage on me for relaxation to try to help the anxiety and has told me to call her anytime even if it’s the middle of the night since she knows how wicked my insomnia is.  I truly appreciate these people that have been brought into my life, and now you are one of those people too, always there to help make things better through your array of knowledge, experience and research even though you are going through things yourself.  Thank you so much from the bottom of my heart for being you and being there.

[fishinghat]

I really do appreciate your kind woirds Mimi. The members on this site are always like family to me. I went through a horrible withdrawal but so many on this site at the time provided support and encouragement to me that was invaluable. While we may have different nationalities, political or religous beliefs we can all agree that is not important while going through this suffering. 

 

To be honest I would take one of those 1/4 pills and try and break it in half. You can always take more if it comes to that.

[frog]

It really is fascinating (and scary!) how differently all mental health medications affect us. Cymbalta made me a bit of a zombie. I was sleeping constantly while on it. I could sleep 10 hours straight through at night, go to work, come home take a couple hour nap from 6-8 and then go to sleep again at midnight until my alarm. I took a nap nearly every day. I've always been a lower energy type of person and I like napping so I didn't really make the connection with Cymbalta until I was seeing my insomnia doc recently and he was like yeah that sounds like it was a bad medication for you. Lightbulb! 

 

I feel like the most likely possible culprits for ongoing insomnia are probably medication, anxiety, or pain/discomfort. The other thing is that acute insomnia can also become chronic insomnia if left unmanaged and then takes a bit more work to get under control (like if you've developed bad habits in the meantime and whatnot)