Desperate

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.
KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Desperate

Postby KDJM » Tue May 22, 2018 11:21 am

I am depressed and hopeless. I am hypersensitive to all drugs. If there is a negative side-effect, I'm going to have it. I've battled RLS for decades and it's only gotten worse. I've tried to alternate drugs daily or weekly, so as to hopefully prevent augmentation. Horizant puts me in a brain fog, I continue to have RLS when I wake up in the middle of the night on Requip. Sometimes I add Ambien and Xanax to my medication cocktail just to get through the night. I never start out with multiple drugs ---- but resort to taking this or that as the night progresses. Last night was the worst. I took 7 mg of CBD oil (I have a compassionate use registration). That didn't work, then I took a Requip (.25 mg) . Later I took another Requip. Then 5 mg of Ambien. Then 5 more mg of Ambien. This is ridiculous! I hate taking any medication in the first place, and I am very obviously not managing my RLS very well. And I wonder if I am now drug dependent for sleep? Where does one draw the line between RLS symptoms and RLS symptoms exacerbated by sleep aid dependency? Some nights - maybe once a week, I get to sleep without anything. So I'm always hopeful that I'm getting better, I try again the next night and my legs go nuts - so I have to take something after it already starts. I don't want to accept the fact that this is my life - forever. One 5 mg hydrocodone seems to work the best for me. I went to my doctor and told him - so he said that was fine, prescribed 90 supply of Norco - and that very night, I took one hydrocodone - and it didn't work at all. I think my body is playing a really cruel game. I never know if I'm going to need something (usually I do), and then it is a guessing game for what to take.

stjohnh
Posts: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Tue May 22, 2018 1:29 pm

KDJM, welcome back to the Restless Leg boards. One thing that will help us to help you better is to find out exactly what you have been taking recently. Exactly what dose of Requip have you been taking the past couple of nights. How many milligrams? If you have only been taking 0.25 mg daily augmentation is a lot less likely, though still possible. Also what dose of Norco have you been taking?.

I noticed from your post in 2017 that you were planning on seeing a RLS specialist at Mayo, what was the result of that visit? Have you continued taking the oral iron and is your ferritin still over 75?

I'm 71, I was in your shoes in a pretty similar situation a couple of years ago but through the help of lots of folks on this bulletin board and lots of reading about RLS I have managed to get far far better control of my restless leg symptoms and don't have that horrible desperate feeling that my life was pretty much over with anymore. It did however take months of experimenting with the different medications, different dosages and different dose timing. You may be one of those folks that do better with low doses of multiple medications taken regularly rather than a dose of a single medication at a higher level.

The problems you are having with your doctor sound fairly typical, however you do have one benefit, apparently the doctor is willing to prescribe medications that you ask for. While it's not as good as a knowledgeable caring physician, it may make it easier for you to try different dosages of medications that you haven't tried. With the exception of only a few doctors, you will likely find better advice on this bulletin board than from most physicians.

One comment that pertains to the use of medical marijuana and its derivatives: very few people have found that using CBD by itself helps sleep much. Even though it is common wisdom that CBD oil helps sleep, for some reason it doesn't seem to help RLS patients sleep very much. A lot of us have found that medical marijuana does help, however there must be significant THC to get a benefit.
Blessings,
Holland

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Tue May 22, 2018 3:21 pm

Thank you for your message. I've been very depressed this morning. I feel very, very alone. I appreciate you're advice. My frustration stems from not having confidence that any one treatment option will work, and when something does work one night or several nights, the success is short lived and I feel like I'm back at square one. I worry about combining drugs, drug interactions, becoming overly sedated. To answer your questions: Requip is .25 mg. Norco is 5 mg/325. I understand the acetaminophen is totally unnecessary, so I'll have to ask my doctor about prescribing just 5 mg of hydrodocone without the tylenol. I can't really ask him about that right now because he just prescribed a 90 supply of Norco 5/325. I don't want to get flagged as drug seeking. In August my ferritin level was 75.8. The visit with the RLS specialist at Mayo was worthless. He had no interest in my issues, I knew more than he did about RLS, and I got the impression that his time was being wasted. I have found success with the CBD oil in alleviating the restlessness, but as you mentioned, not much help with sleep. I used it before a Broadway show last week, and was able to sit comfortably for almost the entire show. Every night, as we are winding down, my legs tell me whether I can attempt to sleep with nothing, or that I'd better try to head off the RLS before getting in the bed. If I think I'm going to have a problem, the next dilemma is "What to take?" ----- it's always a crap shoot on whether any one thing will work or if I'm going to have to raid the medicine cabinets every hour until I'm so doped up I can hardly walk straight. Thank you for listening and caring. I would appreciate any advice you have.

Rustsmith
Moderator
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Re: Desperate

Postby Rustsmith » Tue May 22, 2018 4:10 pm

KDJM, it is exceedingly unfortunate that depression is something that seems to go hand-in-hand with severe RLS. Many of us struggle with it, even when our RLS is mostly controlled.

As Holland said, many of us with the severe form of this disease have moved from using a single medication to relying upon low doses of multiple meds. As long as we stick with the normal RLS meds that we tolearte well, drug interactions are limited. I use a combination of methadone, gabapentin and pramipexole along with an edible form of THC. All are low doses, except for the gabapentin. I find that I need the methadone for my RLS movements, the gabapentin to allow me to fall asleep since the methadone does nothing there. I use the pramipexole for my severe PLMS so that I don't wake up during the night with those movement issues and the edible marijuana to help me stay asleep in the early morning when the gabapentin is starting to wear off.

Another thing to keep in mind is that it helps a lot to stay ahead of the symptoms. If you can feel the RLS coming on, then it is too late and it will may take the meds a couple of hours to get things back under control.

For me, on the few occasions when I find I have lost control at, or just after, bedtime, I find that soaking my legs in a tub of water that is as hot as I can stand is usually enough to quiet them long enough for me to fall asleep. On the nights when that doesn't work, I usually realize that I forgot to take my bedtime meds.

Finally, since your doctor doesn't appear to be knowledgeable or interested learning, I would suggest that you purchase a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Henning, Buchfuhrer, Allen and Hening. It was written for doctors, but you will be able to understand it. It talks about recommended doses, interactions with other meds, meds that can make RLS worse, etc. It is available from Amazon for about $35.
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: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Tue May 22, 2018 5:27 pm

What time in the afternoon or evening do your symptoms usually start?

Also do you have any gabapentin, and what size are the Horizant tablets that you have?

Why don't you buy some marijuana edible brownies or cookies or something so you can give those a try, you want probably 5 to 10 mg of THC per serving.

As you have noticed, RLS symptoms can be quite variable. Because of that, if you are trying a particular medication or combination of medications, you need to use that combination for at least several days in a row to have a reasonable idea whether it's actually helping or not.
Blessings,
Holland

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Tue May 22, 2018 6:30 pm

Thank you Steve and Holland - I just ordered the book "Clinical Management" from Amazon. Thank you for the recommendation. Unfortunately, I no longer have the Horizant. I took it one time, woke up about 2 am in a zombie-like fog. I do not have any gabapentin although my doctor did mention it to me last week. I think the book is going to help me and my doctor develop a game plan for more effective treatment. My RLS usually begins early evening - 6:30 or so. If it doesn't start up before going to bed, it will start within an hour once I'm in bed. I have RLS nearly every day. I am interested in the THC and appreciate the rec of 5-10 mg per serving.

stjohnh
Posts: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Tue May 22, 2018 7:24 pm

Hmmm.. Well I think I would start tonight with 0.25 mg requip and one Norco, taken at 7:30 pm. I'd try that for at least a few days to see what happens. I would take it regardless of whether you're starting to feel symptoms or not. If you get some edible marijuana, I would add 5 mg of THC at the same time as you take the other ones.
Blessings,
Holland

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Tue May 22, 2018 8:43 pm

Will do, thank you!

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Tue May 22, 2018 11:19 pm

Holland, My leg started jerking about 6:30, so I took the Requip and Norco. I have my compassionate use card for medical marijuana in Florida. I was just using the CBD, because I thought that was the 'relaxation' oil. However, the doctor did prescribe Hybrid oil which is 10 mg / mL of THC. I really don't understand anything about medical marijuana, but he told me to use the hybrid 2 x a day and the CBD at night. He prescribed .5 mL per dose. I tried the THC twice in the day time but I felt stoned, which was a unique and uncomfortable feeling for me. Since I have the THC oil, should I use that before I go to bed? After reading a number of Q & A's on this discussion board, I see that finding a doctor who is experienced in treating RLS is going to be nearly impossible. It's such a complicated disease. Thank you so much for your help. We have family in Palo Alto - do you have a trusted, competent RLS doctor there? Maybe I could arrange a visit - - although this board may be all I really need.

stjohnh
Posts: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Wed May 23, 2018 12:45 am

Desperate, yes the Hybrid oil should be just fine, just make sure you get 5 mg THC to start with. Most of us have noticed that the amount of THC necessary to help sleep also makes us feel stoned. Don't know anything that will really help alleviate that problem, so when I get up at night to pee I am stoned. I don't particularly like the feeling either, however the advantage of being able to sleep more is worth it.

I live in Palo Alto as well. The Stanford Sleep Center is on the RLS Foundation list of excellence in care for RLS. Their offices are a few miles away from me. My personal doctor is a very helpful although she is not a specialist in RLS, she recognizes that I know so much about it that unless there is some particular problem she's willing to prescribe almost anything I want to try. I don't see any of the Stanford doctors, but I am happy that they are close, should the need arise.
Blessings,
Holland

badnights
Moderator
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Re: Desperate

Postby badnights » Wed May 23, 2018 5:59 am

Hi KDJM
I hope you're feeling better now that you're discussing things with people who get it. Regarding your comment
I don't want to accept the fact that this is my life - forever.
: I have made the mistake of thinking in terms of forever. But there's no such thing in the real world. From the deepest darkest place (one of my first threads on this board was called "Death is the Answer?"), from which I knew (KNEW!!) there was no escape, I have come to a place of hope and relative contentment. Maybe even happiness. But it's the hope that makes all the difference.

Because I couldn't imagine how I could escape, because from all my reading and logical thinking I could not see a way out, I assumed I was stuck in WED/RLS hell forever. What I didn't know was that in 2014 I would rip apart my knee, which would lead indirectly to my taking a yoga course in which we followed a diet, which would lead to my going gluten free and eventually following the Wahls diet for neurological disorders AND it led indirectly to my starting HIIT gym workouts, because I couldn't play hockey. The diet let me decrease my medications every few months, from 18-21 mg hydromorphone when I started to 9 mg now, and the process may still be continuing, although slower than initially. And the gym - I have to hold myself back from raving about how great it is. To put it plainly, I am happy, and I've never really been happy since I was about 10. Maybe all my life, I don't remember. At this gym, we lift weights, as well as do cardio workouts. The weight lifting does something incredible (a prolonged, stable supply of the endorphins we RLSers are missing?).

How could I have imagined that bizarre sequence of events, back when I couldn't see any way out other than death?

What will your sequence of events be? It will not likely be the same as mine (although I do recommend you look into your diet and seriously consider lifting weights :) ). But the point here is that there IS a way out, in fact there are undoubtedly multiple ways out. Just because you don't know what the ways are doesn't mean they don't exist. Keep trying things, with hope, knowing that something WILL work. There is no forever in anyone's future; we just don't know what will happen.

I took one hydrocodone - and it didn't work at all. I think my body is playing a really cruel game. I never know if I'm going to need something (usually I do), and then it is a guessing game for what to take.
The disease is really variable. We feel we should be able to predict it, to assign the presence of symptoms to some cause or other, but it's too random for that (or we lack all the necessary information, which amounts to the same thing). So first thing to accept is that your symptoms are going to be different from night to night. Most bodies do better on a consistent regimen, which is what Holland is getting at. So you might try setting up a routine in which you take the same dose of meds every night (your base dose, so to speak), and have the option of adding specific meds depending on how you feel.

For example (I'm lucky to have access to these meds) every night I take 9 mg hydromorph contin, 3.25 mg zopiclone, and 25 mg trazadone (the latter two for sleep). Every night except Sun and Wed I take 75 mg Lyrica (because I don't want my body to need it, I had issues with anticonvulsants before; probably silly, but I want to do it this way); that also is for sleep. That's my base dose. On top of that, based on how my body feels - how desperate for sleep I am, how bad my symptoms are - I may take 1-3 mg of hydromorphone (fast release), another dose of zopiclone or trazadone, a tablet of 25/100 levo-carbidopa, or all of the above.

Maybe you can set it up like that. Use Holland's suggestion as your base dose, and decide what you will add if symptoms are strong, if no symptoms but insomnia, etc. Not knowing what you're going to be taking is way too stressful, and we can't make the best decisions when the symptoms are flaring up.

Try not to worry about things that may happen. Save your worrying for the stuff that is happening. Don't waste it on things that may never happen (those are the same things as may happen).

You'll be fine. Neither of us know how, but it's there - the way to have hope again. A better future.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 442
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Desperate

Postby legsbestill » Wed May 23, 2018 10:09 am

I suspect that many with really bad RLS have felt as desperate as you describe at some stage/many stages. Like the others I feel I have made my peace with it - at least up to a point. It has definitely helped me to regard it as a journey.

I would like to emphasise what others have said: in general RLS seems to respond better to small doses of multiple drugs than to a single drug at a larger dose. This approach has obvious benefits for someone like you who struggles with side effects as (mostly) the lower the dose the fewer the side effects.

I treat my RLS with a combination of:
Lyrica - currently between 75 and 100mg - I had a a bad response to Lyrica when it was prescribed as a mono-treatment and was very resistent to it for a long time but at this low dose it definitely helps with my RLS and the side effects are far less pronounced;
Dipyridamole - currently between 150 and 200mg (this drug helps with some of the sensations of RLS but does not eliminate the urge-to-move for me - I am planning to reduce the amount further to see how low I can go);
Pramipexole 0.044mg - I augmented on pramipexole over the course of a decade and had a terrible withdrawal ordeal which lasted months when I vowed I would never use it again but now I take this tiny dose 5 days out of 7 and it makes a real difference to my symptoms;
I am also experimenting with LDN - I introduced it at a low dose and am planning to titrate up to about 4mg when I will give it about 6 months to give it the best chance before eliminating it from my enquiries - I am currently at 2.5mg and it doesn't seem to be making a difference.
I also use cannabis as an edible to induce sleep. It does make me stoned but I seem to have developed an almost pavlovian response to the stoned feeling and immediately it starts to kick in I want to go to bed and unless the legs start up I go straight to sleep.
Finally, I use kratom to help with breakthrough symptoms and for days when I am not taking pramipexole - though I have to leave at least 4 hours between taking LDN or the kratom not so effective.

Other possible therapies:
Diet - I regularly see posts about how helpful restrictive diets are with RLS symptoms - particularly dairy, sugar and gluten free. I am attempting (and regularly failing) to introduce these changes to my regime;
Iron - I would love to get an infusion to see if getting my levels to over 100 would help. I can generally only get them to and maintain them at about 80 with oral iron. Unfortunately so far I have encountered difficulties finding someone who would carry out a transfusion for me here in Ireland.

Sadly, useless or even bad medical advice is a feature of RLS also and we have to become experts in our own treatment - this has been an enjoyable part of the journey for me.

I record what I take and do because I find it very helpful to read in detail of other people's regimes (for example I like Beth's arrangement of only taking Lyrica 5 days out of 7 and might introduce a long term plan to eliminate Lyrica and reintroduce it on that basis). I also find that I derive hope from reading of things that work for other people. You sound like you need some hope at the moment.

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Wed May 23, 2018 12:52 pm

The kindness of strangers has truly moved me to tears. Thank you LegsBeStill, Badnights Beth, Holland & Steve. You have all truly been lifesavers as suicide has been on my mind for quite some time. I don't like to admit it, as I feel there is such a stigma associated with it. I just want you to know how much I appreciate reading your stories and your advice. Happy to report that I followed Holland's advice last night (1 hydrocodone, 1 requip at 6:30 - added 2.5 mL of TBC and 2.5 mL of CBD just before bedtime and I slept peacefully all night until 7! I woke at 1 and 3, but no RLS, no fits --- and went right back to sleep. OH HAPPY DAY! The 6:30 meds allowed me to actually SIT and watch TV with my hubby.

I wonder if I should take a half dose of the hydrocodone and requip to see if smaller will have a lasting effect?

There is a particular challenge on the horizon for me ---- a 3 week RV trip. The RV is small and I was very close to telling my husband that we have to sell it. It is too much torture for me to be suffering with RLS and no place to go. Now I am very hopeful that it will be a pleasant trip and I'll be able to sleep. In addition to the hydrocodone and requip, I also have xanax (.5 mg), ambien (5 mg), and carbidopa/levodopa (25-100). I plan to continue on with Holland's rec on my nighttime regime, but if I have difficulty while in the RV, should I increase the dosage of the hydrocodone and/or requip? Or keep the same and add one of the other drugs? I will continue with the THC/CBD and know I can increase the dosage to .5 mL.

Beth, my natural drug of choice is dancing. Unfortunately I had emergency surgery on April 2 for small bowel obstruction. The only surgery I've ever had (don't recommend it at all) - - - and I haven't been able to get back to dancing yet. Plan to resume mid June when we get back from the vacation. There is a gym close by I plan to join and purchase PT services to help me get into a routine. I've discovered that alcohol and sugar are huge triggers for my RLS, so off limits for the most part. I will definitely research the Wahls diet. I ordered some Red Maeng Da Herbal tea -- is that the correct blend? I've never used Kratom before and the warnings from the internet are pretty scary. If someone could elaborate not only on its effectiveness but also the dangers that may be associated with it, I would appreciate it.

LegsBeStill, what is LDN?

Again, I want to express my sincere gratitude for taking the time to respond and for understanding. It's easy to see yourself as a whiny, self-absorbed, cry baby when there is no one near who can possibly relate to the agony and hopelessness of RLS. I have hope to be able to live a normal, happy life - - - even with RLS. Thank you, thank you, thank you. Will continue to monitor this thread and look forward to hearing from you again.

stjohnh
Posts: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Wed May 23, 2018 1:05 pm

KDJM,
I'm glad you had a good night sleep. I would continue to do exactly what you did last night for at least three more days to see how much consistency there is to your response.

I use low dose kratom in addition to my other medications. I don't use any opioids. As long as you're having a good response with the Norco, I would say stick with it if you have a consistent supply.

My take on the risk of kratom is that it is quite low risk. The only problem that seems to be reasonably consistent is dependence when taken for long periods of high doses. However even that problem is relatively minor, apparently the withdrawal syndrome for people that have built up a dependence to kratom is quite mild in comparison to the withdrawal syndrome from most opioids. The Kratom might be able to supplement or replace your Norco, however you may want to just stick with Norco as apparently you have an easily available supply.

If you have a particularly bad problem night I would definitely NOT increase the Requip. If it all possible I would never go above your current dose of Requip. Dopamine agonists like Requip have awful augmentation problems and they are quite rare at very low doses. Take an extra Norco.
Blessings,
Holland

KDJM
Posts: 13
Joined: Sat Apr 01, 2017 1:51 am

Re: Desperate

Postby KDJM » Wed May 23, 2018 3:08 pm

Thank you very much!


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