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.
legsbestill
Posts: 479
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Desperate

Postby legsbestill » Wed May 23, 2018 8:56 pm

I felt the same way as you when I first got responses in here to my initial cry for help: so grateful that there are people out there who would reach out to help so generously. It is so affirming when this condition can be so isolating.

Sounds like your rls treatment journey has begun! Asking yourself how to tweak your dose is the first step. It’s not all fun and games but it is sort of interesting observing yourself as your own guinea pig.

As Holland says, I would stick with a regime that is working and don’t be tempted to change for a while. Rls can flatter to deceive and you might find that there are disappointing nights ahead as well as successes.

Maeng da is a good strain of Kratom. I think it is quite strong so go easy with it - max one teaspoon to start, especially with the norco. I was really worried about trying Kratom initially and was very glad to be sharing the bed with my husband the first night - I think at a sub-conscious level I thought I would spontaneously combust or expire of an overdose (in spite of starting at a very low dose) instantaneously. BUT I have come to the view that statistically speaking it is relatively safe.

Thus, in the past two years I have withdrawn from mirapexin, OxyContin (maximum daily dose), pregabalin and Kratom. None is something you would actually do for fun - mirapexin is by far the most difficult and Kratom by miles the easiest. A few days of flu-like symptoms at worst. So dependency, although not to be dismissed out of hand, is possibly not the major issue it is made out to be online. I noticed that if you examine most of the posts online that warn against Kratom they are from people who have been on an inordinately high dose and often for a long time - in many instances Kratom has been used as a direct replacement for significant opioid abuse. This is simply not the case for people using it for rls relief. Having said all that I would be cautious if using it in addition to an opioid or opiate.

Ldn is low dose naltrexone. Naltrexone was originally used to help addicts to discontinue opiates - it blocks cravings I think - I’m not 100% sure of the science - but it was discovered that at lower doses it was helpful with a range of illnesses, most notably multiple sclerosis (though not on every case by any means). There are small studies and anecdotal evidence suggesting it helps some rls sufferers. So far it hasn’t helped me much and it will interfere with the effectiveness of opioids so possibly not for you with your norco. I understand it can take a number of months to kick in which is why I will stick with it for a while.

I would agree with Holland that you should avoid increasing requip - increase something else if you need more coverage.

Don’t forget to get your iron levels checked. Increasing iron levels can be very helpful.

legsbestill
Posts: 479
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Desperate

Postby legsbestill » Wed May 23, 2018 9:09 pm

Sorry, for ‘norco’ in my post read ‘hydrocodone’. Also keep your dose of carbidopa/levidopa to the absolute lowest you can - ideally it should not be taken along with requip as they are from the same family - dopamine agonists - and there is a significant danger of augmentation (there is a whole section of the forum devoted to this phenomenon which it might be worth your while looking at).

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

Re: Desperate

Postby KDJM » Wed May 23, 2018 9:10 pm

Thank you so much!

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

Re: Desperate

Postby KDJM » Thu May 24, 2018 5:52 pm

Followed the same treatment last night. RLS well controlled, but did not fall asleep as quickly. Went to bed around 11, fell asleep about midnight. Slept all night - woke up with slight headache. Thank you again for the advice. Question about the Red Mang Da which arrived today. How to take it? When to take it? What to expect? Does it make you high? Does it have any affect on your heart rate or anything like that? How long does it take to kick in? Is it OK to use with hydrocodone and requip?

stjohnh
Posts: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Thu May 24, 2018 9:32 pm

KDJM,
Keep taking just the Requip and Norco for at least 2 more nights. If your good response continues, why not just stick with that? What do you want to accomplish with the kratom? There are several reasons why people on these boards use kratom, but the most common is difficulty obtaining an opioid. If your doctor will continue to prescribe Norco for you, it is an opioid, and if it is working well, why bother with something else?

If you decide to try kratom, I would start with 1/4 teaspoon.
Blessings,
Holland

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

Re: Desperate

Postby KDJM » Fri May 25, 2018 12:27 am

Holland,
Thank you, I understand and agree. I didn't realize that kratom was used instead of an opioid. I just ordered it because I noticed on the discussion board that it seems to be a very common and popular treatment. I'm not looking to add on ---- my belief is that less is more. Would like to keep this RLS under control with as little meds as possible. Kratom will sit in the back of the pantry for now. May never need it.

ViewsAskew
Moderator
Posts: 15325
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Desperate

Postby ViewsAskew » Fri May 25, 2018 3:54 am

I actually use kratom to help me fall to sleep. It makes me sleepy and since I can be stimulated by both dopaminergics and opioids, it can be excellent for me. MM (medical marijuana) also does this for me, as do a few other things. If you continue to have trouble falling to sleep, it may be worth investigating what might work for you.

I also use kratom when I take breaks from opioids, so for me, dual purpose.
Ann - Take what you need, leave the rest

Managing Your RLS

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: 479
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Desperate

Postby legsbestill » Fri May 25, 2018 8:01 am

I use Kratom to take a break from pramipexole two days a week. I also find it great for break through symptoms as my current regime is very much the bare minimum. I think it is a very handy addition to the arsenal of any rls sufferer. I have found the opposite of Ann - Kratom can make me very alert and banish sleep.

To answer your questions, I take the Kratom by dissolving it in grapefruit juice. It takes a while to dissolve but vigorous stirring speeds the process up. It needs to be dissolved in something acidic and grapefruit juice is the most palatable. I would start with slightly less than one teaspoon. You can always increase (I need about 1.5 to 2 teaspoons for my first dose then 1 to 1.5 tsp subsequently). It is very unpalatable so you need to use a small amount of juice and just chug it back.

It doesn’t exactly make you high but it induces a pleasant euphoria. It can also make you a bit dizzy. I take it when I go to bed and it kicks in within 20 minutes. The effects last about 4 hours. I don’t notice any increase in heart rate. There is a thread on Kratom physiology which touches on the interaction with opioids. There is some speculation that it operates on slightly different receptors (I am not a scientist as you can probably tell) but in general it is not used with but rather in place of opioids. There is one person posting on here who is using it in addition to her opioid.

badnights
Moderator
Posts: 4934
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Desperate

Postby badnights » Sun May 27, 2018 4:55 am

I agree fully wtih the others - don't raise the Requip, and start taking iron if your ferritin is below 100 and if your doctor doesn't feel you're at risk for iron overload. Ensuring our brains have enough iron in them can relieve symptoms. Having insufficient iron increases the chances of augmenting on Requip or the other dopamine meds.

For breakthrough, I would take more hydrocodone, if your prescription will cover that. Both Requip and levo-carbidopa cause augmentation, and LC is especially likely to. So I wouldn't take LC at all while you're on Requip; and even if you're not on Requip, never use LC daily, maybe even no more than once or twice a week.

Don't take Ambien when symptoms are present. It makes your brain sleepy while doing nothing for the WED/RLS symptoms, so the only situation in which it makes sense to use it is if you have insomnia without any WED/RLS symptoms. If symptoms are present, you will be unable to fall asleep after taking Ambien, and will need to move around in a groggy state - it's pure torture, the worst thing ever.

I have used kratom while taking opioids and it was ok. Kratom might add something that the hydrocodone can't. But if you can get enough hydrocodone on your prescription, it might make more sense to use that instead, because you get a known potency every time.

Dance is wonderful! You'll probably notice your mood improve when you can get back to it. I hope you're starting to feel more powerful, less like a helpless victim and more like there are thing you can try to make your life better, and there are ways of dealing with flare-ups. The RV experience will feel a lot better if you know you have an option in case you do have symptoms - make a plan for how to deal wtih them if you have to get up ( do you leave the camper and walk outside? do you stand beside the bed and do 30 squats?). Definitely speak to your husband and tell him beforehand that if you do have symptoms, there will be the noise of the door opening or a person moving about, and that's just the way it is.

I hope the trip is fun! I hope you get lots of sleep and can appreciate the world around you in your rested state :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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

Re: Desperate

Postby KDJM » Fri Jun 15, 2018 11:09 pm

Hello to everyone who has offered advice. Here is an update - I've been taking 5 mg of hydrocodone and .25 mg of Requip every night about 7 pm. It has been miraculous to say the least. I've been sleeping all night, every night. I haven't been battling my legs. I still have RLS earlier in the day, particularly if I try to sit and watch TV. But, the medications seem to be working very, very well in the evening. I can't believe it. I'll stay on this combo as long as I can, until it no longer works for me. Thank you, Holland for the recommendation.

ViewsAskew
Moderator
Posts: 15325
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Desperate

Postby ViewsAskew » Sat Jun 16, 2018 12:35 am

KDJM wrote:Hello to everyone who has offered advice. Here is an update - I've been taking 5 mg of hydrocodone and .25 mg of Requip every night about 7 pm. It has been miraculous to say the least. I've been sleeping all night, every night. I haven't been battling my legs. I still have RLS earlier in the day, particularly if I try to sit and watch TV. But, the medications seem to be working very, very well in the evening. I can't believe it. I'll stay on this combo as long as I can, until it no longer works for me. Thank you, Holland for the recommendation.


Posts such as this are half of why I show up every day. The other half? Because of posts such as your first one and knowing that this community will do all it can to ensure posts such as this one.

Feeling a lot of gratitude as well as happiness for you.
Ann - Take what you need, leave the rest



Managing Your RLS



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: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Desperate

Postby stjohnh » Sat Jun 16, 2018 12:45 am

Yay !!
Blessings,
Holland

Polar Bear
Moderator
Posts: 7239
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Desperate

Postby Polar Bear » Sat Jun 16, 2018 12:27 pm

KDJM wrote: I still have RLS earlier in the day, particularly if I try to sit and watch TV. But, the medications seem to be working very, very well in the evening. I can't believe it.


I feel a joy in my heart when I read this.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

peanut1
Posts: 309
Joined: Sat Jun 04, 2011 8:06 am

Re: Desperate

Postby peanut1 » Mon Jun 25, 2018 2:49 am

working out helped my rls and mood immensely. now that i have difficulty walking its seems as if there is no reprieve from the physical pain, rls and depression that has worsened considerably this past year. i think about death ALL the time and i do eat a very clean paleo diet.

ViewsAskew
Moderator
Posts: 15325
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Desperate

Postby ViewsAskew » Mon Jun 25, 2018 6:04 am

peanut1 wrote:working out helped my rls and mood immensely. now that i have difficulty walking its seems as if there is no reprieve from the physical pain, rls and depression that has worsened considerably this past year. i think about death ALL the time and i do eat a very clean paleo diet.


Oh - peanut - so sorry to hear that. I am guessing you have tried swimming? Can be difficult if you have no access to a pool, though.
Ann - Take what you need, leave the rest



Managing Your RLS



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.


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