Throw me some suggestions please. I have tried Benadryl, magnesium, melatonin, lavender oil, calm aid all with no success. I take a vitamin d supplement prescribed by my primary because of a deficiency. My primary said no to hydroxyzine when I asked about that. All supplements must be run by my oncologist and cardio. Besides lymphoma I also have tachycardia and an aortic aneurysm. A physical therapist I worked with wanted to use a tens unit but my oncologist said no. So pass along some of the other ideas and I’ll give them a look.
This afternoon we went for a very long walk, logged 12000 steps on my activity tracker and my husband said you should sleep really well tonight but that’s now how it works for me, doesn’t seem to matter, in fact sometimes it seems the evenings I am the most tired I sleep the worst,I guess we will see.
Need Help To Finish This
#91
Posted 06 May 2021 - 06:26 PM
#92
Posted 07 May 2021 - 07:59 AM
Your comments about the exercise struck a note with me. People suffering serious stress/anxiety often develop what is called 'excercise intolerance'. It is theorized that the heavy exercise when stressed causes an increase in adrenaline and cortisol and results in increased metabolism (from the adrenaline) and more difficulty sleeping and relaxing.
Also, when exercising blood flow to the digestive tract decreases (the blood is needed in the muscles to increase oxygen availability). I would not think this would particularly effect your sleep in anyway as blood flow returns to normal as soon as exercise stops.
Also, I would like to thank you for the overview of your medical info. It will be helpful in looking for a sleep treatment. This may take a little time but I will get back to you.
#93
Posted 07 May 2021 - 04:17 PM
Last night was an ok night for me, slept from 1030 to 4. We took a nice morning walk, about 5000 steps, came back to condo. Took another nice walk this afternoon for another 5000. Mirtazapine just makes me feel so lousy, just greatly fatigued and wiped out. I actually laid down and rested for about 2 hours between walks and that is just not me. I always feel like I’m coming down with the flu and I’m sure it’s the mirtazapine, got better when I was taking it every other night and now that I’m taking it every night again I feel it very strongly again. I appreciate your looking into some ideas for what may help with sleep. I would really like to be able to get off this drug, I really hate the way I feel on it.
#95
Posted 07 May 2021 - 05:49 PM
#96
Posted 07 May 2021 - 06:19 PM
Hi IUN,
I take 2000 units of vitamin d3 and was last tested in January and am in the normal range with taking the supplement. I have been taking the vitamin d for about 5 years now since my blood work showed it was low.
The exercise is actually pretty low, it’s only walking at a casual pace, we normally do about 6000 steps a day so it was more steps than we normally do but not intense at all.
I could be wrong but I really feel the cymbalta withdrawal is over and no longer playing a role in how I feel. As far as the mirtazapine goes, they are scored oval tablets but they are 15mg and I have been cutting them in half and taking 7.5mg. Doctor originally told me to cut them in half and if it wasn’t working I could a start taking a whole one, 15mg, two weeks later. I never felt the the need to increase the dose and also I saw online that the 7.5 is a better dose for sleep and that’s what I needed it for, the insomnia. I don’t think I can cut them any smaller than half because of how small they are and the oval shape. I could possible ask my doc to prescribe the 7.5 tablet but I believe that is a round unscored tablet so I’m not sure that would be suitable for cutting.
#97
Posted 08 May 2021 - 08:24 AM
"I could be wrong but I really feel the cymbalta withdrawal is over and no longer playing a role in how I feel."
It should be noted that it normally takes 2 years for neurotransmitters to stabilize so while the withdrawal symptoms may be minimal the nerve synapses will still be very sensitive to changes. Our forums are full of recounts of withdrawal symptoms fading and members getting carried away with exercise, alcohol, social activities, etc and having a relapse in symptoms. I think your move to 5000 steps twice a day is a wise one as this spreads the stress out over an extended period.
#98
Posted 08 May 2021 - 02:20 PM
Hat, I really need your help to assist me in understanding how to taper down the mirtazapine by mixing it with liquid. I have 15mg tablets and am unable to cut them by more than In half which I am already doing because I take 7.5. I understand from IUN that unscored tablets should not be cut and I checked and the 7.5 tablets are unscored so shouldn’t be cut. I know I have to crush the tablets but then what do I mix them with. Please explain to me what to do. I am not sure how much help the mirtazapine is even giving to me. I took one last night and fell asleep about 10 but woke up at 330 unable to fall back asleep. We left the beach to,come home about 9 and what should have been about a 3hour ride turned into 5 because there was an accident on the bridge crossing the chesapeake bay and all we could do was sit there in traffic and wait it out. Well anyway we are safely home and have unpacked the car but I am seriously wiped out from lack of sleep and the heavy fatigue that mirtazapine gives me. I feel barely functional and it’s only 230 in the afternoon. I know if I ask my doc he’s going to say just stop taking them, it’s a low dose and you haven’t been on them that long but just alternating nights taking them left me feeling pretty bad. So any help you can give me will be much appreciated.
iin April 2014, after my 4th round of chemo I started with horrible insomnia, first time in my 58 years I had ever experienced insomnia. I was already taking klonopin at that time which my primary had given me in dec 2013 when I developed anxiety over my cancer diagnosis and all the waiting between biopsies and tests and everything that was going on. When the insomnia started, even though I was no longer feeling any anxiety because of the klonopin, my oncologist insisted i go to a psychiatrist for the insomnia. IIt was a horrible experience, as she loaded me on all kinds of drugs, she increased the dose of my klonopin from .5 a day to .5 three times a day and added neurontin because she said it was sedating and would help me sleep. Well I slept for all of about a week or two and then back to the insomnia. So what did the pdoc do but increased the dose of neurontin and added trazodone into the mix, again I slept for a couple weeks and back to insomnia. Then is was adding in mirtazapine and again sleep for a very short time. At this point I found a pdoc who was on my insurance plan and changed over to her and I told her all those meds were for insomnia and she absolutely could not believe it. She said it was a very messy regimen of drugs and she needed to try to straighten it out. She tapered me off the neurontin. She then stopped the trazodone over a couple days. Then she just stopped mirtazapine saying it doesn’t have a withdrawal and I guess I didn’t notice one with everything I was taking, didn’t know what was causing what and the whole time only sleeping about 2 or 3 hours a night. Then she added ambien, with no improvement in sleep, changed it from ambien to ambien cr stil no sleep, then changed to lunesta and still no sleep. She stopped everything but the klonopin which by them we had reduced to .75 and sent me to a sleep doc who prescribed lexapro. I took one dose of the lexapro and just one dose made me so sick, horrible vertigo which left me crawling to the bathroom to throw up. I called him and said I could not take another dose, I was so dizzy I couldn’t even get to my feet and all he said was if you don’t take the drug he couldn’t help me and that was the end of the lexapro and that sleep doc. Pdoc, at my request, started a taper of the remaining .75 of klonopin saying pdocs put people on drugs and keeps them on drugs they don’t get them off so if she saw any signs of anxiety or depression I would have to go back on. We started a very slow klonopin taper using a compound pharmacy to drop .05 every 2 weeks. Unfortunately after getting most of the way through it reducing by .05 every 2 weeks, she informed me that she was giving up the practice due to health issues she was having but she did give me the compounding scripts to get me through the rest of my taper as well as the name of another pdoc, who I never saw, should I need more help and the name of a support group, benzo buddies, which I relied on for the rest of my klonopin taper. I finished the final bit of klonopin in feb 2015. It was somewhere about the near end of the taper that I started sleeping again. I’m not sure if it was the drugs, or the mix of drugs that may have been part of the insomnia, but finally on nothing I was sleeping again. I had no more insomnia until this started out of the blue on Christmas Eve, and I think all the antibiotics and antifungal med played into it. I then think the cymbalta made the insomnia much worse, and doc started mirtazapine as I was finishing up the cymbalta taper. While I do not think the mirtazapine is causing the insomnia I’m not sure it’s helping. So I am thinking I would like to starting tapering it down and see what happens. Why I explained all this I have no idea and I apologize for the ramblings, but again I would like you to explain in terms I can understand how to make the liquid to taper more slowly than pill cutting.
#99
Posted 08 May 2021 - 04:45 PM
That pdoc was right. That was a drug nightmare you were on. Example, ambien should not be given while on a benzo as it makes benzos more addictive.
By the way I am also a member of benzo buddies and that is where I learned about water titration (a very long time ago). I will have to look up the solubility of mirtazapine and then get back to you.
#100
Posted 08 May 2021 - 04:57 PM
OK, mirtazapine is vertyally not water soluble. That leaves out water titration. The next best thing would be gravimetric titration.
1. Weight out 5 tablets to the nearest 0.01 grams. Fiqure the average weight of 1/2 tablet. (You may need to by a set of scales from Amazon, ones the members have used are listed in the ebook) Once you get the average weight you can then weight out small doses every day, reducing the weight slowly. The powder can be weighted and then placed in a gelatin capsule for consumption.
I am sure you will have questions so feel free to ask.
#101
Posted 08 May 2021 - 07:07 PM
The scale option sounds a bit too much for me. Mirtazapine come in a Soltab, a disc that disintegrates in saliva, would that be water soluble and maybe work. I guess I could get my doc to order liquid mirtazapine for me, there is a compounding pharmacy right up the street from me, I’ll have to check and see if they make it in liquid form. I’m assuming the veterinary mirtazapine is not an option for me (only kidding). Thanks for your help, you’re absolutely amazing.
#102
Posted 09 May 2021 - 06:24 AM
Mirtazapine seemed like it didn’t really work again last night, really wiped so took it about 845 but couldn’t get to sleep even though I could hardly hold my eyes open until 1130 and woke up at 230. I am already exhausted and unable to sleep during the day. Supposed to go to my daughter house for Mother’s Day dinner and somehow I will drag myself there. I am just so tired of being tired and having to push myself through every day. Is there nothing that helps this insomnia.
#104
Posted 09 May 2021 - 08:03 AM
Suggestion #1
#105
Posted 09 May 2021 - 08:12 AM
Do you know what Benadryl you tried previously? There are several variations. By the way Benadryl interacts with Cymbalta and they should not be taken together.
Do you know the name of the Chemo you took for lymphoma? This could be key to finding an answer.
What type of tachycardia do you have? Atrial or ventricular?
#106
Posted 09 May 2021 - 08:52 AM
The benadryl I tried had diphenhydramine in it, did not make me sleepy at all, in fact hyped me up. I have used Dramamine at amusement parks and cruises but it has never made me sleepy at all. The chemotherapy I had was rchop, Rituxan, Cytoxan, vincristine, doxorubicin and prednisone. I had six rounds, three weeks in between. 24 hours after each infusion I had to have a shot of neulasta as well. Vincristine had to be left out of the last round due to neuropathy. I will have to ask what type of tachycardia I have, it developed during chemo and never resolved, my resting pulse is usually in the 90s. The aneurysm is left ascending and was discovered during all the cancer testing, at that time it measured 3.9 and now it is 4.2, still considered watch and wait. Thanks for all you’re doing, I most appreciate it.
I messaged doc about not getting sleep from the mirtazapine and he suggested going up to 15mg and see if that helps. Infuses me a bit because everything I have seen says the lower the dose the more sedating it is. I hate to go to 15 just to face more withdrawal but maybe if I try it for a few nights I will be able to go back to 7.5 without issue, what do you think?
#107
Posted 09 May 2021 - 09:12 AM
A few days on 15 shouldn't hurt nto much. With a half life of 20 to 40 hours it will omly take 4 to 6 days to tell.
Thank you for the additional information. It should help. More to follow.
I take it that your tachycardia is a rather constant issue and not occuring in episodes. For example I have atrial tachycardia. My normal pulse is 55 to 65 but during episodes of atrial tachycardia it can reach levels of over 200. These episodes usually only last 1 to 3 minutes.
#108
Posted 09 May 2021 - 09:31 AM
#112
Posted 10 May 2021 - 06:14 AM
Hat, I upped the mirtazapine dose to 15 last night and actually slept well. I am not sure if it was the higher dose or the fact I hadn’t slept much for a few days. I am also hoping that I won’t get tolerant to the 15mg dose like what seemed to happen on the 7.5 dose. The lower dose helped with sleep for the first few weeks then didn’t see, to help anymore. If that develops again on the 15mg dose it will just make withdrawal that much more difficult. I have seen reviews on mirtazapine where people are using it for sleep for years at very low doses and yet it seemed the sleep aid of it didn’t work for me after about 6 weeks. Ay yi yi, what in the heck do I do.
#114
Posted 10 May 2021 - 09:55 AM
And the next nominee for a sleep aide is....jujube extract.
You will find a lot of references to this on websites (subjective).
This is a very common item used for sleep in oriental culture. The best form for sleep is reflected in this supplement...
#115
Posted 11 May 2021 - 05:45 AM
Some interesting studies on Jujube there Hat. Some new knowledge for me.
The biggest issue with insomnia is not so much the getting to sleep as is the STAYING asleep. I found that everything I tried served well to get me to sleep no problem, but I would still wake in the night and it was game over. That was when I tried your (Hat) tips of walking round the flat. Ashwagandha worked really well, but it doesn't last long enough for sleep. Melatonin the same, but lasts a bit longer. The extended release is an option, but of course, there is that groggy feeling the next morning to contend with in most users.
I have relied on a combination of meditation and Kratom (when needed). The drugs artificially settle the mind into a state for sleep, but when it wears off, it is back to square one when you wake part way through the night and as your mind is still in the zone, it will do its best to prevent you from sleeping. The long-term solution is to get your mind to a state of relaxation before sleep. I initially used the Kratom which really helped getting my mind to a state for the meditation, and then I would fall asleep as a result of the both, but found that my mind, in its relaxed state was less prone to waking up. I rarely wake in the night now provided I maintain a suitable regimen of meditation.
Granted the meditation takes time and people are often looking for an immediate solution, but having tried a lot of everything, it was a case of being my only option.
#116
Posted 11 May 2021 - 08:35 AM
Well my internet crashed yesterday afternoon but I am back up and running.
I checked out you drugs from the Rchop therapy. Only one had a link to long-term insomnia (see note below).
#117
Posted 11 May 2021 - 01:54 PM
Thanks for all the information you us have supplied, it’s absolutely amazing. I’m not sure what to do. Yesterday I was so worn out from the 15mg dose, could hardly put one foot in front of the other. I was still feeling the heavy sedation last night when I went up to bed so I went back to a 7.5 dose. I slept ok last night but again today the fatigue is really getting to me. We went out and ran a couple errands and then we came home and I went and laid in my recliner for a couple of hours. I just can’t win, if I don’t take. Irtazapone I literally do not sleep more than 2 maybe 3 hours a night every single night. I’m sleeping with the mirtazapine most nights but have no energy at all the following day. Today the tinnitus has been pretty loud again and there has been some low jitteriness, wonder if it was the 15 dose I took the night before last doing something. I really don’t know what to do. I would very much like to get off the mirtazapine but before I started on it I was not sleeping hardly at all, couldn’t fall asleep until exhaustion hit between 11 and 1, then sleep for usually 2 hours and then no more sleep until the next night where it all would repeat itself. There is so much going on the next few months that I don’t know what will happen if a try to withdraw from mirtazapine. My daughters bday is Sunday, then it’s Memorial Day. Grandkids have baseball and softball games as well as swim meets coming up. We have a week at the beach booked for early august. I also started back yesterday with the pelvic floor therapist I worked with a few years back to see if she can figure out something to do about this pain I’ve had since chemo. I’ve seen a ton of different docs and physical therapists but no one can tell me what’s causing it. So I have appointments with the physical therapist set for twice a week through June. I’m supposed to go back to the third pain management doc I’ve seen over the years to talk about a spinal cord stimulator and if that will help with the pain. I just don’t know how I can accomplish any of that in withdrawal, because the worst withdrawal effect for me is not being able to sleep. I don’t even know if the original insomnia has settled down any at this point. How would I know if I’m sleeping only because of the mirtazapine or if I am capable of sleeping on my own. My first experience with insomnia was in 2014 during chemo and no matter what drugs they used I did not sleep. But finally, after I got off all the drugs I started sleeping again on my own and things had been fine for the last 6 years until the insomnia started again on December when I was dealing with diverticulitis, followed immediately by c difficule and then a uti. Any ideas would be much appreciated.
the melatonin you (hat) suggested will arrive tomorrow and I will try it along with my dose of mirtazapine to see if I sleep any better.
#118
Posted 11 May 2021 - 03:15 PM
Don't forget, if you wake in the middle of the night you can take the low dose of sublingual melatonin as well and it may allow you to get back to sleep for a while longer.
If you slept well after coming off the Rchop therapy then it would not be a residual effect of the Rituxin.
Just one man's educated guess but I don't think the mirtazapine is effective for you. From what I have read the sleep effect of mirtazapine is a 50/50 proposition. I could well be wrong though.
You talk about the plans coming up and dealing with them while in withdrawal. While it may be hard to do it would be best for you to stay isolated and away from stress. You have to take care of yourself for not only your sake but also I am sure your family doesn't want to be the source of any additional suffering because of them. Your choice though.
#119
Posted 11 May 2021 - 03:48 PM
I totally agree with you that I don’t think mirtazapine is a good drug for me except that it, so far, is the only thing that has allowed me to get sleep. I was totally beside myself when I saw my primary doc after going almost a month with only 2 to 3 hours sleep a night, I was an absolute non functioning zombie. And all the plans are things that I am very much looking forward to, I really enjoy time with the kids and grandkids when I feel myself. Hat, do you have any kids or grandkids? I do not enjoy time with anyone when I am sleep deprived. This whole pandemic and not being able to spend much time at all with the kids and grandkids has been very detrimental to me. In fact, I used to take care of the grandkids while my son and daughter-in-law worked, had to stop when I went into,chemo and was never able to resume. Prior to the pandemic we usually did a game night at our house or one of the kids houses, we all live within 15 minutes of one another, I missed that tremendously during this time. We are still unable to do some things because my grandkids are 10 and 8, not old enough to get vaccinated and my son-in-law has a very serious health issue and can’t be around the kids. The medical stuff is certainly not enjoyable but necessary and again I have to sleep in order to get there and be able to focus on what they are saying, especially since with covid no one is allowed to come to doc appts with you, so no extra set of ears to listen and question with you. As I said, the worst withdrawal symptom for me has always been the insomnia because I do not sleep at all, have gone as long as 48 hours with zero sleep. I am really hoping the the melatonin will help and then maybe I can start to taper the mirtazapine, otherwise I am afraid I am stuck on it for sleep.
#120
Posted 11 May 2021 - 04:46 PM
"Hat, do you have any kids or grandkids? "
No mimi I don't. My wife and I are allergic to children. lol When I was dating my wife and things were beginning to be serious we went out to eat one night. My wife looked very serious and leaned across the table and said "I have a question for you.". Now as a husband that is a terrifying experience because you know this is serious business. She asked me if I wanted children and I instantly said "not really". She immediately sat back gave out a big sigh and said "Whew, that is a releif." It took awhile for my heart to stop pounding. LOL
On a more serious note, tommorrow I will get back on the looking for additional sleep aides for you. Sorry to take so long.
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