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#91 mimi10

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Posted 06 May 2021 - 06:26 PM

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.


#92 fishinghat

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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 mimi10

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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.


#94 fishinghat

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Posted 07 May 2021 - 05:09 PM

I notice that 6% complained to the FDA  about fatique when taking Mirtazapine.


#95 invalidusername

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Posted 07 May 2021 - 05:49 PM

Hi Mimi,
 
The issue we have here is so many variables and one result. It is so difficult to attribute the result to any one variable which is why we always suggest trying one supplement and/or drug at a time. All too frequently doctors prescribe two meds to combat an issue, when one will be sufficient, it is just a case of finding which it is.
 
Can I ask what dose of vitamin D you are taking, and when you were last tested? 
 
A TENS unit has to be used with caution, and not knowing your cardio background, I can understand the vido by the oncologist.
 
Hat's information about the exercise is prudent here and what with the withdrawal still in early stages, the adrenaline needs to be kept in check. Giving it the opportunity to spike now and then will not be the best way forward. Light exercise at most for the time being - as strange as that sounds.
 
It is difficult to separate the Mirtazapine from the withdrawal, as the effects can change as the withdrawal eases. It is also possible, depending on your metabolism, that the ever other day works better. If that is the case, you would be on 5mg at this point. I would suggest that you level the dose by taking 5mg each day for a week to 10 days to see if this improves. This would be perfectly safe to do so, and it would give some much needed information.
 
Please note that in order to do so, the pills must be scored. If they are not scored, then the amount of Mirtazapine is not uniform in the tablet and therefore, in theory, one half could contain anything from 0mg to 10mg. But hoping that they are scored, I would certainly advice this as a potential trial run.

#96 mimi10

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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 fishinghat

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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 mimi10

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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 fishinghat

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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 fishinghat

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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 mimi10

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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 mimi10

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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.


#103 fishinghat

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Posted 09 May 2021 - 07:05 AM

I should have time to work on the insomnia issue today. Hold on mimi.


#104 fishinghat

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Posted 09 May 2021 - 08:03 AM

Suggestion #1

 

Dramamine
71 member mentions.... 62 positive, 7 no help, 2 intermittent help, 13 says causes sleepiness, 
Helps with lightheadedness, jolts, dizzy spells, sleep, nausea, brain swooshes, calming, motion sickness, brain zaps, Sloshy head, and anxiety.
Active Ingredient
Dimenhydrinate - an antihistamine - Tell your doctor or pharmacist if you are taking other products that cause drowsiness such as opiod pain or cough relievers (such as codeine, hydrocodone), alcohol, drugs for sleep or anxiety (such as alprazolam, lorazepam, zolpidem), muscle relaxants (such as carisoprodol, cyclobenzaprine), or other antihistamines (such as cetirizine, diphenhydramine, hydroxyzine).
Caution -  some members state that "dramamine did..." but as listed below there is a difference in ingredients and dosing for different kinds of dramamine. Please follow label directions. Dimenhydrinate is available in 98 products approved in the USA other than dramamine so please check label ingedients before using with other products. Nearly all nausea, cold, flu, sleep aides and dizziness medicines contain antihistamines and are incompatable with each other. Check ingredient list closely. These drugs Will NOT contribute to Serotonin Syndrome.
Seven members admit to taking two or more of these products at the same time OR taking double doses. This has lead to comments like...
"...and chucked my guts all day"
"and afterward had stomach cramps for hours"
Tips from members -
1)  Careful with the Benadryl and the Dramamine together. (causes you to be sick)
     Also one member warned of 'DO NOT take both NyQuil and Dramamine.... '
2) Be careful taking dramamine during the day - it knocks me out! 
3) Dramamine can also be doubled up at the initial dose. It all depends on your size and what you may or may not be sensitive to.
4) ORIGINAL FORMULA DRAMAMINE. (NOT THE NONDROWSY), just hypes you up and makes the dizziness worse.) 
5) One said it can cause nightmares.
6) One said it does not cause nightmares
7) So, I was taking this ginger gravol and it did nothing for my nausea. I started taking half of a regular gravol (same as Dramamine) and its finally working 
8) 2 said - the ginger gravol version does not cause sleepiness
9) if taken on a regular basis, it stops working

#105 fishinghat

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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 mimi10

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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 fishinghat

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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 fishinghat

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Posted 09 May 2021 - 09:31 AM

The next one is a suggestion I feel strongly about. Melatonin. Yes I know you tried it before.
 
Your post of 16 March 2021
I tried melatonin and it didn’t help me at all, I just laid in bed awake with a terrible case of vertigo from it, tried a 5mg melt and thought maybe that was too strong so got 2mg timed release formula, same results. In fact, after taking melatonin had to get up to use bathroom and was stumbling around which made my husband say no more melatonin as he was afraid I would fall and get hurt.
 
 
My post of 16 March 2021
"It is no wonder that you had that reaction from the melatonin. Research shows that a dose greater than 0.75 mg is actually detrimental to sleep. The optimum dose is around 0.5 mg sublingual. Sublingual is below the tongue. Place placing a few drops (depends on the product) under your tongue and holding it there until it is absorbed (1 or 2 minutes) directly into the blood stream it is more effective. By taking it in the pill form it is mostly digested."
 
 
A dose of 2 to 6 mg of melatonin is way to high and explains the loss of balance. In addition that side effect is more pronounced with oral doses as when melatonin is digested the decomposition products cause the morning hang over and loss of balance. Melatonin is by far best used subligual (under the tonque). I use only 0.2 mg under the toungue and sleep very well. By placing it under the tongue it is absorbed directly into the blood and allows you to drift back to sleep usually within 15 to 20 minutes. This was a life saver for me when I go through benzo withdrawal. If I awoke during the night I could go back to sleep quickly and because it goes into my blood stream directly it acts fast and is not decompsosed by digestion. There is no residual 'hangover' in the morning as well. I also originally tried 3 mg dose nut it did nothing for my sleep, in fact, it made my sleep more restless and less refreshing and had a terrible fatique the next day. Doses over 1 mg have been shown to significantly reduce REM sleep.
 
I use 1 drop of the following product....
 
 
Place one or two drops under the tongue until the vanilla flavoring disappears (2 minutes +/-). This means the melatonin has been absorbed. 

#109 mimi10

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Posted 09 May 2021 - 09:41 AM

My daughter is Amazon prime member, I’ll have her order some for me when I see her later today.  Thanks.


#110 fishinghat

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Posted 09 May 2021 - 12:18 PM

More to follow.


#111 mimi10

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Posted 09 May 2021 - 07:26 PM

Melatonin you suggested has been ordered and will be delivered to my house on Wednesday.  Hoping for the best.


#112 mimi10

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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.


#113 fishinghat

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Posted 10 May 2021 - 07:39 AM

I am glad you got some sleep last night. i will keep my fingers crossed.

 

I saw some research on the subject of building up tolerance to mirtazapine but the resulkts were all over the place. It makes you kind of think that with time it loses its punch.


#114 fishinghat

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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...

 
 
Jujube (also called San Zao Ren) (Genera Ziziphus)
 
FH - San Zao Ren is the same thing as Jujube. It does have anxiolytic effects but can also reduce bp so please monitor carefully.
Geebers - She gave me an herbal powder called San Zao Ren (Chao). This is to help with the anxiety and sleep. 
 
The alcohol extracts of Semen Ziziphi Spinosae have the anti-anxiety effects instinctively. Its mechanism may be related to increasing the GABA and expression of GABAAR1 and reducing the Glu and expression of NMDAR1.
 
It is concluded that sanjoinine A may have anxiolytic-like effects in the elevated plus-maze, hole-board test and open field test, and these effects may be mediated by GABAergic transmission.
 
ZE (jujube) with the 5-HT(1B) (serotonin) receptor.
 
All the above mention anxiolytic effects.
 
Traditional usage of Jujube is taking 50g of the fruits (20 individual 2-2.5cm diameter fruits) and doing a hot water extract, either a soup of a beverage.
 
There currently is not enough evidence in humans to establish an effective oral dose of Zizyphus Jujube supplements but estimating from animal studies finding benefits with 500mg/kg for anxiety reduction, an estimated human dose would be:
5,500 mg for a 150lb person
7,300 mg for a 200lb person
9,000 mg for a 250lb person
 
The seeds of Ziziphus jujube have been implicated in reducing anxiety, in accordance with their traditional usage. Oral administration of 0.5, 1, and 2g/kg of the ethanolic seed extract in mice was able to exert anxiolytic effects, and although it was equally effective as Buspirone and Diazepam (2mg/kg and 1mg/kg, respectively) at a black and white test (anxiety model) at 500mg/kg, it appeared to become less potent at anxiolysis at 1 and 2g/kg while becoming more sedative in nature.
 
Good for constipation. May be acutely anti-fertility, but there is limited evidence to support this notion.
 
Above reference contains support references.
 
As no human toxicity tests have been performed care should be used when taking this supplement.
 
I would review each of these I send you, try one at a time, keep a list of what else to try. If one fails then move on to the next on the list. 

#115 invalidusername

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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 fishinghat

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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).

 

Chemotherapy
 
Rituxan (Rituximab)
 
Rituximab-Containing Treatment Regimens May Imply a Long-Term Risk for Difficult-To-Treat Chronic Hepatitis E
"After a treatment pause of two months RBV was continued at a reduced dose of 800 mg/d due to increasing fatigue and insomnia of the patient, who shows persisting HEV replication and constantly elevated aminotransferases until present."
 
Note - longterm use of Rituxan can lead to hepatitis E infections and symptoms of increasing fatique and insomnia. These patients will have an elevated aminotransferase (liver enzyme) which will be reflected in any CMP (complete metabolic panel blood test). I am sure your drs run a CMP before during and after your therapy. If you can get access to those results look for your ALT test results and see if they are elevated or increasing in number.
 
 
Cyclophosphamide & Doxorubicin 
 
No significant insomnia issues found.
 
 
Vincristine
 
One medical website listed insomnia as a possible long-term side effect of Vincristinebut no medical research articles were found to varify that statement.

#117 mimi10

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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 fishinghat

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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 mimi10

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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 fishinghat

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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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