Need some advice

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.
Angeleyes2230
Posts: 5
Joined: Fri Dec 14, 2018 10:39 am

Need some advice

Postby Angeleyes2230 » Sat Dec 15, 2018 5:04 am

Hi y’all! I’m new to here but needed to join something that others would understand my problem! I suffer from pretty severe rls. I usually take Hylands restful legs and Kratom to help, however my rls has gotten so out of hand that I decided to see my doc. He started me on Mirapex which I had to stop after a week. It made my symptoms so much worse that I went 3 days without sleep. He just called me a script in for ropinirole .5mg, I have seen a lot of scary reviews on this medicine. I’m curious how many people have tried this medicine and how well it has worked. I’m at wits end and sick and tired of crying every night because I can’t sleep. Any advice or words of encouragement would be greatly appreciated!!

sleepdancer2
Posts: 211
Joined: Sun Jun 29, 2014 7:46 am

Re: Need some advice

Postby sleepdancer2 » Sat Dec 15, 2018 12:39 pm

I have used both of the dopamine agonists you mentioned. They helped at first but it didn't last, and at higher doses I had side effects and augmentation. Before your doctor prescribed these meds did they order bloodwork? The test we hear the most about is a ferritin level. Those with RLS are recommended to keep our level higher than what most others need. Getting and keeping your ferritin level near 100 is usually advised. I can't quote the studies, but it is thought that those with lower ferritin are more prone to have problems with taking a dopamine agonist. Because of what I experienced with side effects and augmentation, I'd suggest addressing the ferritin issue before starting on the med. Give yourself every chance to succeed. And if it doesn't work, don't just keep going to higher doses. These days high doses are frowned upon. While you are at it, wouldn't hurt to make sure that other levels are ok of things pertaining to muscle and nerve health. Magnesium and Vitamin D come to mind. My issues are more with periodic limb movements than the RLS, but I have found using a TENS Unit on my lower back before bed helps quiet my legs for the night. Hopefully you can find some things to help you.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

stjohnh
Posts: 951
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need some advice

Postby stjohnh » Sat Dec 15, 2018 3:32 pm

Angeleyes, I'm glad you found us. RLS is a BIG problem and most people that don't have it just don't understand how devastating this disease is. You will find lots of help here from knowledgable, helpful compassionate people.

I agree with everything sleepdancer discussed.

It would help us give better advice if we knew a little bit more about your situation. How old are you, what other medicines have you tried in the past? Have you ever had a ferritin test and what was the number of the ferritin level? When does your RLS start bothering you? What dose of Mirapex did you use? Does the RLS bother you only in your feet or elsewhere too? What is the primary symptom of your RLS? Is it mostly an overwhelming urge to move you legs? If so, does the feeling go away as soon as you get up and walk around? Do you take any other medicines (prescription or non-prescription) for anything else? How much kratom have you been using?

One thing that you wrote that is puzzling is that for people who have never taken Mirapex (pramipexole) or Requip (ropinirole) is that they are almost always very effective initially at improving RLS symptoms. The worsening of your RLS with the Mirapex is unusual if that is the first prescription medicine you have used.
Blessings,
Holland

Angeleyes2230
Posts: 5
Joined: Fri Dec 14, 2018 10:39 am

Re: Need some advice

Postby Angeleyes2230 » Tue Dec 18, 2018 5:59 am

Hello again! Thank you for responding! I am 32 years old. I have been taking the kratom in off and on doses pretty much only when my rls acts up. Mirapex was indeed the first prescription I have tried and it was awful! My doc did not order any bloodwork but I’m going to ask about it. He has since switched me to riquip but I have been taking kratom to ease the symptoms because I’m so scared it’s going to make it worse again.

Angeleyes2230
Posts: 5
Joined: Fri Dec 14, 2018 10:39 am

Re: Need some advice

Postby Angeleyes2230 » Tue Dec 18, 2018 6:01 am

As far as my symptoms it’s a combo of the have to move feeling and sometimes aches, which I think could be from work(I work 2 jobs) even getting up and moving doesn’t really help, only temporary relief until I sit or lay again. This is truly a terrible thing and I always feel like my doctor thinks I’m making it up. It’s nice to have some support from others that deal with it. Other than that though he has not ran any tests or anything on me. I forgot to add that I do take Hylands restful legs as well. I also use a epsom salt rub too

stjohnh
Posts: 951
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need some advice

Postby stjohnh » Tue Dec 18, 2018 2:43 pm

Angeleyes2230 wrote:Hello again! Thank you for responding! I am 32 years old. I have been taking the kratom in off and on doses pretty much only when my rls acts up. Mirapex was indeed the first prescription I have tried and it was awful! My doc did not order any bloodwork but I’m going to ask about it. He has since switched me to riquip but I have been taking kratom to ease the symptoms because I’m so scared it’s going to make it worse again.


Hmmm... How many nights a week do you take the kratom and how much (grams or teaspoons) do you take? On the nights you don't take the kratom, how many hours do you sleep? Have you tried any sleeping pills (prescription or non-prescription)?

Also, what size tablets of Mirapex did the doctor prescribe? 0.125mg? 0.25mg?

If your doctor doesn't believe you when you try to tell him about your problems, it may be time to switch doctors. The fact that the doctor hasn't done any blood tests (esp. the ferritin test), suggests this doctor has very little experience with RLS. Another indication your doctor doesn't know too much about RLS is that Requip is usually started at 0.25mg, not 0.5mg. If you decide to take the Requip, I would start with 1/2 (or even 1/4) tablet rather than a full tablet of the 0.5mg size your doctor prescribed.

Most women in your age range already have low or very low iron from monthly blood loss, part of why women have RLS much more often than men. (My apologies if you are male, I figured not too many men would pick a user name like Angeleyes.)
Blessings,
Holland

Angeleyes2230
Posts: 5
Joined: Fri Dec 14, 2018 10:39 am

Re: Need some advice

Postby Angeleyes2230 » Tue Dec 18, 2018 7:45 pm

I take capsules, and it’s got so bad that I take it almost every night. I want to switch doctors because this is not fair to leave me this. And no worries I am a girl lol! The Mirapex was.25mg. He hasn’t even mentioned bloodwork at all. I do take a multivitamin but that is all. Thank you for responding. I though it was a high dose as well. But with how he acts I didn’t even question because it seems like this issue to him is a joke, when in reality I’m suffering to sleep. I work 6 days. Bartending 2 days, serving one and run a vape shop the other days. If I get to sleep it is usually 1-2 hours and I’m up again. And that continues for days. He will not prescribe me anything for sleep because he said that sleeping meds do not help with rls. I have tried over the counter sleep meds but it usually works one night and that is it. I usually can get maybe 3-4 hours of sleep on them.

stjohnh
Posts: 951
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need some advice

Postby stjohnh » Tue Dec 18, 2018 8:56 pm

Angeleyes, how many kratom capsules and how much in each capsule a night?

People who use kratom for RLS have different opinions as to the best strain, but most agree that Red Vein Borneo is quite reliable.

Probably your problem with Mirapex was too high a dose.

I'd suggest for now that you take the kratom every night and that you add a very low dose of Mirapex to that. 1/4 of a tablet every night.

Also edible marijuana helps many people with RLS sleep. I'd suggest 10mg THC an hour before bed and 5mg 3-4 hrs later, unless you are very slim. If very slim take 1/2 that amount. I think you will be a lot better if you take those 3 medicines every night. The correct amount of THC is an amount that makes you feel somewhat stoned.

Do NOT take any over the counter sleeping pills. Many have diphenhydramine in them. It always makes RLS worse.

I'm glad you are getting another doctor.
Blessings,
Holland

Rustsmith
Moderator
Posts: 4136
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Need some advice

Postby Rustsmith » Tue Dec 18, 2018 11:39 pm

In addition to Holland's comments, I will add that at least your current doctor knows enough to not provide you with any of the conventional sleep meds. He is correct that they are totally ineffective for most of us. About the only things that seem to help are either gabapentin/Horizant/Lyrica or some form of marijuana that has THC. Any of the marijuana products that are primarily CBD don't seem to do much for most of us.
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.

Angeleyes2230
Posts: 5
Joined: Fri Dec 14, 2018 10:39 am

Re: Need some advice

Postby Angeleyes2230 » Fri Dec 21, 2018 5:43 am

Thank you both for your advice!!! I’m going to try this and see what happens! I have been taking kratom the last 3 nights and have not had a problem, but I may have heavily dosed because I had the “high” feeling. Although I didn’t mind it after a long day!! Thank you for all of your suggestions! I appreciate it!!!

badnights
Moderator
Posts: 5304
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need some advice

Postby badnights » Mon Dec 24, 2018 8:47 pm

Hi angeleyes.
When next you see your doctor, you have to tell him coherently how you are suffering from sleep loss due to the WED/RLS, that is, describe the sleep loss and describe how it is impacting your life. Tell him, for example, that your sleep is fractured, you never sleep more than 1 hr at a time except rarely 1.5, that you're exhausted in the mornings and your work is suffering, and things that used to take you 1 hour to do now take you 5 hours. That you have no social life anymore because you're too exhausted to formulate a sentence come evening, and can't sit still besides.

Find facts that fit your situation; those words are just an example (but use them if they fit!).

We often act humble and self-effacing in front of doctors, and expect them to read between the lines. If we say "I'm not getting enough sleep" we think that's enough for the doctor to understand how it's impacting our lives, but it's not enough, we have to be specific. It'ts really messing your life up, and he should understand that. Once he gets the extent of the impact on your life, he can begin to find a solution, but if he never gets it he will never put any effort into understanding the disease.

Dr Richard Allen wrote in one of his papers that there is only one disease known that causes greater sleep loss than RLS/WED, and that's Fatal Familial Insomnia - which, like the name says, is fatal. The effects of chronic sleep loss are far-reaching; you should illustrate this with examples from your own life (no social life, unable to think clearly or quickly, etc.).

You should get to a QCC as soon as possible, but meanwhile if you have to work with your GP, get him on board with how it's actually affecting you. I agree with Holland that he should have ordered a ferrritin test first thing, so he is not terribly knowledgeable, but I also agree with Steve that he does know something about WED/RLS because he knew not to prescribe you sleeping meds. (Sleeping meds might be useful once the RLS/WED symptoms are under control).

So get that ferritin test. Labs still say that ferritin levels as low as 20 are normal, and perhaps they are for regular folks, but people with WED/RLS need higher levels, the exact level differing by person but usually at least 75 or even 100. Some of us need even higher. So get the actual number when you get the test. If your doctor has assured you that there is no possibility of iron overload, then you can pretty much start taking iron even if he says you don't need it - as long as he says it won't harm you. Note: This is not medical advice, it's my opinion.
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.


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