Improved symptoms - what now?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
stjohnh
Posts: 317
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Improved symptoms - what now?

Postby stjohnh » Fri Dec 16, 2016 2:13 pm

:oops:
legsbestill wrote:Loads of very useful information. Many thanks Holland and Steve and QyX. I will have to experiment further with my non-legal marijuana. I have had some great sleep with it but it is hard to get the dose right....


Legs, if I had to use raw marijuana, I would take at least a few grams, grind in food processor to be sure each capsule I use has the same THC content, and loosly fill 00 capsules. Take one 2 hours before planned sleep time. You should have at least a mild stoned feeling at 2 hours from dose. If one capsule doesn't help, try 2 capsules the next night, if no better, 4 the next. Each capsule will likely have 300-500mg of ground up marijuana in it.

For me, I need to take enough to feel stoned to get the sleep benefit. I also take another dose about 4 hours after the first dose (along w 50mg gabapentin) to help me sleep the last part of the night.

If you decide it helps, buy a scale ($10-20) on Amazon to more accurately fill capsules. Also, I would buy enough marijuana to last at least several months at one time, grind the whole batch, and keep what I was not currently using in a freezer. All this will help you get consistent sleep from each dose.
Blessings,
Holland

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Fri Dec 16, 2016 4:59 pm

Hi Holland and thanks (again) for useful info. I was just thinking I might buy a scales, having (mis) spent the afternoon using my raw material to make what I hope turns out to be decarboxylated cannabis infused coconut oil. There is so much conflicting info out there but it would appear that to make my dried raw material more effective when ingested, it must be decarboxylated. I am not sure I achieved this as mine behaved differently from available videos/descriptions. I made one batch of cookies with the dried stuff added just as it was - using a recipe I found on here. They were delicious but while some made me very stoned, others seemed to have little effect even though I added the leaf material to the cookies individually. Hopefully the coconut oil will produce a more uniform effect.

Hi Steve, I could hardly believe it when I read your post. That is exactly what my consultant did (try to convince me that there would be no augmentation on neupro). It was like you were a fly on the wall of the consulting room! I did not distress myself by trying too hard to disabuse her. Conversely, she was flatteringly impressed with my system of 3 meds at low dosage and took detailed notes of when I take them, how the meds take effect etc etc because she is thinking of recommending it to other patients. This from the woman who refused to prescribe opiates when I was in torment because 'they would make me mussy'. I credited you (as an annonymous RLS sufferer with considerable experience) with the final piece of the jigsaw for me which was adding in Lyrica to improve sleep. Hopefully, I have disseminated some of the accumulated wisdom of this website (and Dr. Buchfuhrer who advised me earlier in the summer) through her to other RLS sufferers in Ireland. There seems to be only one specialist sleep clinic and it is her and one other woman so most of the worst cases will likely end up there.

stjohnh
Posts: 317
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Improved symptoms - what now?

Postby stjohnh » Fri Dec 16, 2016 6:06 pm

legsbestill wrote:Hi Holland and thanks (again) for useful info. I was just thinking I might buy a scales, having (mis) spent the afternoon using my raw material to make what I hope turns out to be decarboxylated cannabis infused coconut oil. There is so much conflicting info out there but it would appear that to make my dried raw material more effective when ingested, it must be decarboxylated. I am not sure I achieved this as mine behaved differently from available videos/descriptions. I made one batch of cookies with the dried stuff added just as it was - using a recipe I found on here. They were delicious but while some made me very stoned, others seemed to have little effect even though I added the leaf material to the cookies individually. Hopefully the coconut oil will produce a more uniform effect.


I did make marijuana oil (though not decarboxylated) but tasted bad and didn't work any better. The recipies I tried didn't work better either and just made good cookies taste of marijuana. I haven't found commercial edibles that taste good. All are "off" in some way. Easier to just put in capsules and swallow w my other meds.
Blessings,
Holland

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Mon Jan 23, 2017 11:07 pm

Belated update: my consultant suggested a sleep study which I had last week. She was looking for sleep problems additional to rls.

My mixed med system of 1mg neupro patch, 5mg OxyContin and 50 to 75 mg pregabalin had been working pretty well. Unfortunately last week a few days before the sleep study, I started getting more severe breakthrough twitches. I went back up to 2mg neupro but that wasn't wholly effective so I also increased my OxyContin. and that seemed to deal with the problem.

I wanted to make sure I was actually asleep for the sleep study so I took 2mg neupro and initially 3 OxyContin (15mg). I was still restless at midnight so took another 5mg Oxy. At 2am I was jerked awake again and previous experience suggested that if I didn't do something I would be jerked awake all night so I took a fifth Oxy. I haven't taken more than 3 OxyContin for a while so it was a bit of a jump. I slept peacefully (as I thought) for the rest of the night.

After the sleep study I reduced back to 10mg Oxy and 1 mg neupro and then stopped neupro altogether hoping that a break from it for 10 to 14 days will reset me and I can go back to 1mg successfully.

Since stopping neupro, I need 25 mg Oxy to get through the night. All fine, I expected that and it's my plan to alternate, using higher doses Oxy to enable a break from neupro and then back on neupro and reduce Oxy to lowest possible. However, consultant rang today to say I have central sleep apnea caused by OxyContin and I must reduce my dose.

I am gutted - what's a girl to do? Without a decent dose of OxyContin I can't do without neupro and if I can't take a break from neupro I will augment uncontrollably and can't use it.

Rustsmith
Moderator
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Location: Pueblo, Colorado

Re: Improved symptoms - what now?

Postby Rustsmith » Tue Jan 24, 2017 3:06 am

legs, your normal medication system appears to be similar to mine. I have been on 5mg methadone, 900 mg gabapentin and 0.25mg pramipexole for almost a year now. Before starting the methadone, I was taking 900 gabapentin with up to 1mg pramipexole and was horribly augmented. I was averaging 3.5 to 4 hrs of sleep each night with maybe two 15 minute naps during the day.

I made the switch to the new treatment in one day without any issues. I think that I could stop the pramipexole right now, but my doctor wants me to stay on it to control my PLMS. It must be working, because I had a sleep study in November and did not have any PLMS issues and that was definitely not the case before I started down this road.

So, my question for you is whether you have given any thought to:
1. why can't you simply reduce the Neupro to 1mg and stay there. The chances of augmenting at that low dose are much reduced, especially for long acting Neupro as opposed the other DAs.
2. would increasing your pregabalin help with your sleep issues? Gabapentin doesn't do anything for my RLS movement issues, but it is the only thing that helps me fall sleep.

Finally, I have to admit that during my sleep study in November, I woke up at 1:30A, called it quits and went home. Fortunately, my doctor was only interested in seeing whether sleep apnea (no) or PLMS (no) were the causes of my sleep problems. She concluded that a change to my treatment was not warranted. Since that I time have concluded that I was getting too much thyroid hormone and have stopped taking it (with the approval of my GP). I now believe that it was the thyroid med that has been causing my poor sleep for the past year.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Tue Jan 24, 2017 3:39 am

Hi Steve, thanks for the response. It sounds as though you are now getting better sleep. I'm very pleased to hear it. I probably could stay on 1 mg neupro. It's just I'm paranoid about augmenting again so that now if I need a higher dose of da my response is to cut down (eliminate) rather than increase. I really want to extend the time that Das work for me as long as possible as they are so effective for my symptoms.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

How to recognize augmentation on neupro

Postby legsbestill » Thu Jan 26, 2017 2:27 am

I'm not sure if my recent need for increased dose of neupro was augmentation. I have been off it for a week. I think the rls was more pronounced after eliminating the neupro than my baseline figure but not by much. I am going to stay off it for 14 days to give it a chance to wash out.

Given its 24 hour coverage, how do folks know whether neupro is causing augmentation or whether it's just a bad patch of rls or deterioration?

I can't wait to go back on neupro as the OxyContin isn't as effective even at the high doses which I am taking in spite of dire warnings from my consultant regarding the attendant central sleep apnea.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
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Re: Improved symptoms - what now?

Postby Rustsmith » Thu Jan 26, 2017 2:58 am

I cannot speak for others, but I knew that it was augmentation when I had to go to higher and higher doses just to maintain long term control. It wasn't a day-to-day issue, it was an increase that occurred over weeks. I was having more and more movement urge issues and my sleep was getting worse and worse. The steady decline occurred over a period of several months, so I knew it wasn't a bad patch or even a bad package of patches. As for deterioration, I started with almost all of the symptoms of augmentation before I was even diagnosed with RLS, much less started on DAs. I never got quite as bad as I was before I started treatment, but I was headed that way and knew that it couldn't continue. Unfortunately, it was six months before I was finally able to make the switch to my current regime of methadone, pramipexole and gabapentin.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 317
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Improved symptoms - what now?

Postby stjohnh » Thu Jan 26, 2017 3:46 am

Legs, I agree with Steve, i would stay on the 1mg patch and never increase it. The lowest doses of DA are less likely to induce augmentation and the 1mg patch may be helpful for a long time. If your symptoms worsen i would increase the oxy up to what your doc considers safe. Also remember that RLS symptoms vary from day to day even if meds and your routine is otherwise stable, so I would not change meds based on a few bad days.
Blessings,
Holland

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Relaxis

Postby legsbestill » Fri Jan 27, 2017 12:34 am

Thanks lads, I am probably over-anxious. You all know how tricky it is finding your feet post-augmentation. I still haven't got over the awful time getting off pramipexole when I swore I would never go back on a DA again and, like so many others, I don't have access to a genuinely knowledgable/interested doctor.

On a more upbeat note, I have ordered a Relaxis pad as another weapon in my rls arsenal. I am excited to see if it helps. It has to be delivered to my aunt in Los Altos and then she will send it on to me so should get it some time next week.

yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Re: Improved symptoms - what now?

Postby yawny » Fri Jan 27, 2017 1:12 am

Legsbestill, when you can, please share your details on the use of the Relaxis Pad...I'm super curious about it!

Also, are you still experimenting with cannabis? I tried decarboxylated cannabis just once and my sleep was a mess. It was too strong and kept me awake. I haven't had a chance to try it again. I was told by the marijuana dispensary employees to not use crumbled marijuana on an edible (cookie) because you bake off the medicinal effects. They said you need to first cook the marijuana in a fat like butter or oil which will bind the cannabinoids to the fat which you can then use in baking. I follow an edible recipe (mini muffins) but always cook it at a much lower heat (300 degrees) than called for because regular baking temperatures are too high and evaporate some of the medicine. One of the dispensary employees is a "stoner guru" and he suggested I go even further to protect the medicine from evaporating by adding a layer of something on top of brownies/pan cookies like chocolate or a glaze. I haven't done this because I'm not good with extra sugar at night but found his stoner optimization efforts pretty funny.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Fri Jan 27, 2017 1:33 pm

Hi Yawny, I will definitely post my experiences with Relaxis - like you I was very keen to hear of other people's experiences, particularly given the price of the pad! But as I watch my life being 'disappeared' by RLS, money becomes increasingly secondary.

I have experimented with marijuana. As I understand it, the purpose of heating it in an oil/fat is to cause decarboxilation so if yours is already decarboxilated, that surely wouldn't be necessary? Anyway I tried it in cookies using a fab recipe I got on here from a post I think by Natwest - one cup peanut butter, one cup brown sugar and ... Actually I can't remember the last ingredient. I made the cookies and added the marijuana (inserting it into the cookies, somewhat haphazardly as to dose, before baking) just as it came - sort of dried foliage stuff and also after I had decarboxilated it in coconut butter. I didn't notice an appreciable difference between the two and StJohn (Holland) since told me that he had a similar outcome. I wonder does all that faffy stuff appeal to stoners.

To cut to the chase I had a fantastic sleep from it - it overcame my opiate alerting like nothing else. I wonder does it depend on the strain? As mine was illegally come by I couldn't say what it was but there are some good recommendations on here. I wish I had access to a regular supply. Mine came from the brother of my daughter's boyfriend. In order to get more I effectively turn my daughter into my supplier and I'm just not quite that desperate!

I have also tried blue lotus which is legal here. An interesting experiment - it is said to have aphrodisiac properties - usually such claims prove empty for me but not in this case ... It also induces sleep and the dreams were very .... Interesting ... But the sleep seemed very shallow and the effects wore off after about an hour and I was awake again. Hey ho. My husband is quite keen that I continue my experiments with that one but from am rls point of view it wasn't great.

Today I received a shipment of Kratom from The Netherlands (again this is legally dubious - actually just plain illegal - where I live). So I will try that out tonight. However research this morning suggests that it is not recommended with central sleep apnea which I was recently diagnosed with.

I feel I should finish by saying that I am a middle aged, middle class former professional and not a junkie! At least not in the usually understood sense but I am planning to return to my career (somewhat ironically as a lawyer) in October after a long break for child rearing purposes and I want to explore as many avenues regarding my rls as possible before then. At present I am not getting all my sleep between 8.00 and 10.00 pm and from about 6.30 am until about midday - when possible. I am hoping this will change next week when I resume neupro as it controls my legs much better than OxyContin alone and also allows me to reduce OxyContin which in turn helps reduce the alerting. In the meantime I will try the Kratom if only to see how it works.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Fri Jan 27, 2017 1:48 pm

Hi Yawny, I just realized that most of the recommendations for cannabis strains I looked at were made by you! Judging by your posts you are much further down the road of experimenting than I. Are you finding cannabis generally less helpful for sleep now or is it just the decarboxilated stuff?

yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Re: Improved symptoms - what now?

Postby yawny » Sun Jan 29, 2017 6:40 pm

Legsbestill, I really enjoy your sense of humor...

In reviewing my notes, I realize it isn't the decarbing that was my problem, it was THC. It activated my brain and kept me from sleeping...like staring at the wall for hours and thinking it was the most interesting thing I've ever seen. After that batch and having tried every THC product in the dispensary, I switched to high CBD strains with low THC and finally got relief. I knew I could do better because I had tried one product that was pure CBN and I had great sleep for about a week. So I figured out how to make the CBN myself and that's what I've been using successfully for almost a year now. I vape and take a homemade edible right before bed. I finally came to accept that I also have anxiety issues that aren't remedied by deep breathing so my neurologist and I are working on treating that and my sleep has improved more as well as my daytime existence. I've added Gabapentin and am currently experimenting with additional low dosages of Buspar and Tizanadine.

Yes, strains of marijuana do matter. I heard it from the dispensary employees and experienced it myself. I tried strains that did nothing or made my symptoms worse (I'm looking at you evil Holy Grail Kush!). It's frustrating when you're miserable and this happens but it can work out if you keep trying. I finally found about 6 strains that work well. Interestingly, they are all DNA related to one another. The stoner guru suggested I try strains related to the one strain (Tahoe OG) that was working for me. It was the only one that worked really well after trying so many. And he was right, the cousins worked well too. Another employee told me to try a strain for at least 3 times before deciding anything. That's difficult when you're miserable but it helped me realize that everything with marijuana feel less like medicine and more like alchemy.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Sun Jan 29, 2017 9:58 pm

Hi Yawny, I also enjoy your humour as well as finding your posts very informative - I was chuffed by your compliment. Here in Ireland I can get CBD oil legally and I have been taking it twice a day. I don't find it has much, if any, effect. I think I am taking quite a low dose. To make CBN I would have to get more cannabis and I haven't managed to do that. My understanding was that CBD oil can be helpful with anxiety issues but then if you look on the web there seems to be almost nothing that cannabis can't solve in one way or another. Anyway, well done for recognizing your anxiety issues. That is the first step on the road to resolving the difficulty. Best of luck with your experimentation.

Over the last two nights I have tried my Kratom - taking a teaspoonful mixed with grapefruit juice at about 10.00pm. The first night I had a fantastic sleep - had to take a second dose about 2.30 am and then slept again. The second night it was as if I had taken nothing at all - back to the old problems, i.e. couldn't get to sleep for hours and when I finally did the legs started jumping (I also took the usual 15mg of Oxycontin and 75 mg gabapentin which are also inconsistent in their impact on symptoms and sleep inducement). I was so tired and had nothing much to do today so spent the whole day in bed with hardly any jumping legs which surprised me. I slept from about 7.00 am to 12pm and again from about 4.00 pm to 7.00pm. So much for sleep hygiene. Ironically often I find that when I manage to get a sleep in the daytime, I sleep well the following night. Hopefully that will apply now.

Amazingly, my primary rls symptom - the jumpy legs - has become quite mild in the last few months. Last Summer I could not spend any time in bed at all, even after a good dose of Oxycontin, but now that is not a problem. And when they are jumpy they are less violent. Unfortunately, I am so tuned into them that even very mild jumpiness wakes me up completely. And even if they aren't jumpy, I have real problems with nocturnal wakefulness so the impact on my everyday life is almost as bad - ie that I am too tired to live it properly. I am hoping that the relaxis pad will help with the jumpiness so that I can reduce all meds, especially those that cause alerting and all my problems will be solved and I will live happily ever after.


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