• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

So what (Presciption) Medicine should I try next for my sleep?

*GG*

senior member
Messages
6,389
Location
Concord, NH
I was on Trazadone until 2009. I'm on Remeron now, since 2009. Taking the top dosage of 60mg a night! Wondering what drug might help me next, and looking to explore that now so as not to completely ruin remeron as an effective drug!

Have heard people alternating meds so as not have the medicine stop being effective.

I did try Doxepin in between trazadone and remeron, doxepin did not work for me at all. Would think I did a high enough dosage?

I do have 5mg of Zolpidem (Ambien) when the meds do not work, brain isto wired I guess

Seeing the Dr within a few weeks, and want to go with suggestions in mind/on paper :)

Thanks for any help/feedback in advance!

GG
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Dr. Bell recommended Elavil (amitriptyline) to his patients. It might make you excessively sleepy during the day though. Personally, I haven't found anything that works well, except for the first few nights of taking baclofen, then it stops working.
I hated Ambien.
 

Kati

Patient in training
Messages
5,497
Hi @ggingues, what is your sleep difficulty? Do you have problem falling asleep or staying asleep?

My problem has been falling asleep, from the get go.
i am currently on Zopiclone (to fall asleep) and Remeron (15mg) to stay asleep. i also take 2.5 mg of melatonin which doesn't hurt, but more than that I found it was constipating me.

zopiclone is not necessarily meant for long term but I was started on it and it works for me. i started at 1-7.5 mg tablets, I now take 2 tabs, and sometimes an extra half if I can't fall asleep. It works for me.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Beward of Elavil (amitriptyline) , there are at least 3 of us at this website (all who have ME) who have suffered major permanant body damage with amitriptyline so is possibly the most damaging drug being commonly given to this patient group. Paralysed bowel or bladder. For me I ended up with a bowel prolapse due to it from a 2-3weeks small dose trial (though I've found out since the dose the doc said was small wasnt so compared to what many other ME patients get prescribed on it).

It has a physiological affect of also slowing down bowel peristalisis (noted on wiki as doing that, I suppose that is still there), it completely stopped my bowel from working to the point I was having to have daily heavy duty enemas. It ended up in the short time I was taking it, caused my bowel to prolapse, so now I have a permanent troublesome weak spot in my bowel which can collect feaces (and it took over a year to get that prolapse kind of okay again and im at risk of prolasping again with slight constipation now).

The other two with ME here who got permanent damage from that drug, it permanently paralysed their bladders. Due to this, I advise against ME patients taking this drug as I think it needs to be properly studied among our patient group seeing the affects can be so damaging. (esp avoid if you have IBS-C already, you do not want to then be taking a drug which has the affect of slowing down bowel peristalsis)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If your issue is a circardian rhythm issue assume you've tried melatonin, in my case it can help me get to sleep 2hrs earlier then I usually would without it. (slow release version thou didnt work well for me, I need to get a good dose straight up).

An over the counter sleep aid Doxylamine Succinate has very strong sleep affects and can work as well as strong benzo drugs. One often only needs a very small dose (i was buying a small dose and then quartering my pills). Ones body can get used to this drug so that it stops working but as I was taking such small doses that never was an issue for me though I had to raise my crumb of it I was taking at one point, so ended up taking half a pill of a small dose.

I find the benzo drug Temazapam good for sleep. My CFS doctor only allows his patients to take it twice a week due to one can build tollerance to this just like to any other benzo.

So in my own case I found forming like a sleep program with alternating different drugs to avoid issues with some of them most helpful for me.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Thanks, NH passed Medical MJ 2 years ago, dispensary are finally firing up! Was planning on calling Dr office tomorrow to make an appt. @ScottTriGuy

GG

PS Had a couple Uncles visit from Canada. Passed along that write up in regards to Health Care in Canada for out illness. FYI

Vaping/smoking indica strains grown by mmj patients never made me fall asleep, but YMMV. I don't know much about the grey/black market in NH, but in Wa state, before the state got involved in it and made it all mj legal, growers kept the best stuff for themselves and their friends (I was one of the lucky ones), and sold their meh stuff to the dispensaries. Now that Wa state is involved from seed-to-sale, dispensaries have to buy from licensed producers (warehouses, not someone's basement).

You can ask for high CBD (indica) strains such as Charlotte's web, Harlequin or just ask the budtender to recommend something for sleep.

I vape mmj in a Magic Flight Launch Box, save the remains, which look like army green/brown ashes, and add them straight to a boxed baking mix, like brownies or cornbread, add water, etc., stir and bake. This definitely makes me sleepy, but it also makes me hungry. So at 2 a.m., I faced the choice of walking to the 7/11 store at the corner to buy a sandwich (cuz I didn't like any of the food I had at home) or wanting to fall asleep. HUNGER won! Not exactly a good sleep solution. It's possible to ingest so much cannabis from an edible that it will make you drunk and give you the spins. That's why you should start with a small dose, wait 90 minutes, then take another dose.

I vaporize because it's easier on the lungs and doesn't make me feel hungover the next day like smoking does.

The remains from a vaporizer are called ABV (Already Been Vaped). There are forums where people share recipes for making ABV edibles. For recipes look at the thread titles in this topic for the words ABV or vaped weed:
http://fuckcombustion.com/forums/cooking-with-cannabis.10

Edibles purchased at an mmj dispensary cost a lot if you plan to use them on a daily basis. There are tinctures, but I've never found one that did anything at all. Some people swear by coco caps.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@ggingues I thought a lot of things sounded gross, until I needed them. I found hypothalamus, adrenal, pituitary, and thymus glandular were all excellent additions. How could making LDN be gross? tablets + H20 = solution w/ sediment on the bottom...:confused:
 

Kati

Patient in training
Messages
5,497
I'm used to swallowing a pill. Don't taste anything that way :)

GG
Speaking of which, Zopiclone has a terrible after taste. You got to swallow very fast and get used to it :aghhh: hard to explain what it tastes like, but probably metallic is nearest thing.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I'm used to swallowing a pill. Don't taste anything that way :)

GG

Why don't you try natural things first and if they don't work, do what you have to? Or have you already tried that?

My husband has severe insomnia and Ambien made him walk around half awake talking gibberish and also gave him anxiety. He never gets anxiety. He also tried something else that messed him up. And he has an amazing detox system, any drug he takes his body detoxes it the next day. We with ME/CFS...not so much.

We both do a combo of slow release and fast release melatonin. And when waking up in the middle of the night, take some more. Plus a bunch of other natural things. Have the room at a cool temp, black-out curtains, use earplugs.
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
Here's what helps me sleep:

About 2 hours before bed:

Niacin - 300 mg. - it sensitizes the GABA receptors (also take 200 mg. after dinner)
magnesium
100 mg. l-theanine
3 mg. sublingual melatonin (Natrol fast dissolve)
100 mg. 5-htp
2000 mg. l-glycine

and in the middle of the night:

3 mg. sublingual melatonin
200 mg. niacin
2 tablets Theanine Serene (http://www.iherb.com/Source-Natural...250000022688&gclid=CNHClPeBrcwCFYNsfgodVjEEHg)
1000 mg. l-glycine
1 mg. lorazepam
100 mg. l-theanine

Okay, it's a mouthful, more than a mouthful, but it works. I was surprised to find that niacin helped so much. It really made the l-theanine supps more effective. When I tried taking niacin during the day, it made me tired,but it's perfect for bed.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@ggingues, since you're contemplating mmj, I want you to know that the Magic Flight Launch Box is not the last word in vaporizers. It's just easy for beginners to use.

I belong to a private mmj forum in Wa state, composed of medical users who know each other and see each other in person, so it's a tight community. The highest (!) recommendations are for the Arizer Extreme Q:
http://www.aroma-tek.com/Arizer-Extreme-Q-_p_11.html
You might save a few bucks by purchasing it on eBay - not sure about Amazon.