RLS; Now Stable

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.
IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

RLS; Now Stable

Postby IThinkImInTorture » Fri Mar 03, 2017 7:56 pm

Hello
I have tried requip, mirapex and neupro in concert with 3x 50mg of tramadol. requip side effects are upset stomach and night sweats. Mirapex is equally as effect as neupro. Neupro is better as it is a 24 hour patch and offsets the drowsiness of the ultram. However, I don't like ripping off the patch each night. I take three ultram which my neurologist is trying to get me off stating I will get used to the three tablets and need more to get the same effect until eventually you will be taking so much your liver will fail. I have been taking three tablets per night for three years and haven't needed to up the dose.
The tramadol does negatively effect my short term memory making me less effective at work. I would like to find something that doesn't negatively effect my short term memory and could help me get off tramadol. I went down to two tablets one night and my RLS came back with a vengeance, disrupting sleep and knocked me out of the work cycle for the week.

On a side note, I watched a youtube video where someones legs went all blue because muscle tissue put pressure on the vein in the leg. Could all this RLS be tissue cutting off blood flow when we lay down at night?

stjohnh
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Re: RLS; Now Stable

Postby stjohnh » Fri Mar 03, 2017 10:10 pm

IThinkImInTorture, welcome. Lots of good info here, but it would be helpful to know the doses of neupro and any other meds you are taking. I take kratom with my mirapex and low dose gabapentin. Kratom can replace tramadol in some circumstances.
Blessings,
Holland

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Fri Mar 03, 2017 10:36 pm

3mg requip at night
Miropex .25mg at night
Neupro patch 2mg (24hour patch) at night
3 x 50mg if Tramadol

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Fri Mar 03, 2017 10:54 pm

I know nothing about Kratom other than a few blog entries. Where should I buy it and what dose should I use?

Polar Bear
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Re: RLS; Now Stable

Postby Polar Bear » Sat Mar 04, 2017 6:45 pm

Quite apart from the Neupro patch and the Tramadol, You are taking quite a heavy dose of DA medication i.e. 3mg requip and .25mg Mirapex.

There was a time when the daily dose of Requip was max at 4mg but the experts in this field now believe this is too high and it is considered that 1mg Requip is better as a max daily dose for RLS. Bearing in mind you are also taking Mirapex at what I think is the max daily dose - They are both DAs.
Is it your Neurologist that is prescribing the Requip and Mirapex? And is he considered to be knowledgeable in the treatment of RLS?

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as mirapex or ropinerole/reequip. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
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

IThinkImInTorture
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Sat Mar 04, 2017 10:51 pm

Hello

Well I don't take any of these meds together. Either it is Requip alone or it is Myrapex in replacement. So, for example, I am currently taking Neupro patch with three 50mg tablets of Tramadol.

My blood was taken at Johns Hopkins University hospital and the iron result was 149 ng/mL and the range is 30-400ng/mL.

I have to get rid of Tramadol as the short term memory problems make me look incompetent at work and I have been an excellent Network Engineer for 15 years.

So, if I hear your correctly, perhaps I should ask him to put me on Neupro and Gababpentin and maybe try some Kratom also?

Note: I am taking the following meds for hypertension, Vitamin D deficiency and social anxiety. My testosterone is borderline.
I am 45 year old white mail, 5'8" 284lbs trying to get Nutrisystem off the ground.

Vitamin D 50000IU once per week

50mg of Eplerenone once per evening (diuretic)
12.5mg of HCTZ in the morning (diuretic)
20mg of Bystolic in the morning
320mg of Valsartan in the morning

100mg of Coenzyme Q in the morning.
1/2 500mg of Niacin in the morning and evening.

30+60mg of Cymbalta in the morning.

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Sat Mar 04, 2017 10:57 pm

oh and I have sleep apnea but have a compliance problem with the mask. Some say it helps RLS but I feel it makes RLS worse.

badnights
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Re: RLS; Now Stable

Postby badnights » Wed Mar 08, 2017 9:33 am

Hi IthinkImInTorture

Your posts made me think of so much I don't know where to start.

If your WED/RLS is not controlled, I imagine it might make you less able to tolerate the mask. I''ve also heard that reducing or eliminating the apneas can improve WED symptoms, but I think that comes about from sleeping better which is less stressful for the body, and any reduction in stress can reduce WED symptoms. You're not likely to notice any improvement on a nightly basis, only after a long enough compliant time for your body to begin healing from the sleep loss, if I understand correctly.

Vitamin D deficiency has been linked to increased WED symptoms. That and iron (usually as measured by ferritin, as Polar Bear explained) are the only two nutrients that have been clearly linked to WED/RLS. So you might have some exacerbation if you're dealing with a deficiency. Re your "iron" - is 149 ng/ml the ferritin value?

SSRIs have been known to exacerbate RLS in some people, so you might have that going on as well.

PB is also right about your Mirapex and Requip dosing, but your Neupro dose seems ok. How long did you take each and how long ago were the switches? Did you switch directly from one to the other or have a washout period? If you didn't have a washout period and you augmented on one, you would still be augmented when you started the nest DA, which means you would need a higher dose and would continue to augment.

Have you learned about augmentation? That should be your first step. See the link in my signature box. I would recommend going straight to the Foundation's Medical Bulletin for Healthcare Providers, but there are shorter pamphlets too. I may not have the most recent links there but I do explain how to go to the Foundation page and check the publications. Even better, the book Polar Bear mentioned. Also you can check out some of the other links, they have to do with augmentation and iron.

Short version: augmentation is a phenomenon that happens with WED patients on DA meds, such that the DAs start to make things worse after working initially. (DA = dopamine agonist, a class of meds that includes Mirapex, Requip and Neupro). We think our disease is getting worse but it's the meds - the ones that are supposed to be helping us - causing it. The solution is to stop the meds. This causes a phenomenon you've heard of called withdrawal. In the case of WED patients stopping DAs, withdrawal consists of a worsening of symptoms. So withdrawing after augmenting means your augmented symptoms get even worse.

It can be hellish, but it's worth it to break the cycle of never-ending worsening of the symptoms, always needing a higher dose which then makes the symptoms worse, repeating forever. Most RLS specialists will give you opioids to help you through that period. Some don't - there is a group of specialists who think you don't truly re-set unless you have no meds at all for a week or two.

Re your tramadol - your doctor I suspect does not know much about WED. You've been on a stable dose for years yet he wants to get you off it - not a good idea and I suspect he will not be the one to help you through a DA withdrawal.

Kratom is a herb that contains an opioid-like substance (or substances?). There are threads here that talk about availability and dosing but it is not a regulated medication and in fact it is illegal in some states I think and some countries. I wouldn't mention it to your doctor, he won't be able to help you with it and might misconstrue your request to mean you're drug seeking. I don't know if kratom is associated with short-term memory loss but it might be very useful in getting through DA withdrawal if your doctor won't prescribe opioids.

Re short-term memory loss, have you considered that your sleep loss might be the cause? You have untreated OSA and probably-augmented WED. I bet if you had a sleep study done it would show very low sleep efficiency and very little deep sleep. This can affect memory and you wouldn't be the first on here (me too).

Re muscle pressure on veins - interesting theory - there has been some recent work linking RLS to reduced oxygen in leg muscles, or something that makes the body think there is reduced oxygen - I don't remember and would have to check. Also there has been some compelling anecdotal evidence that WED in certain people is caused by varicose veins, and fixing them will eliminate the WED

I think I've forgotten a few things I wanted to say, but I've said enough! I hope it's useful to you and I hope you can learn lots here and begin to heal your life and get some sleep at night. You need to address the OSA as well, if masks don't work for you then look at other options?
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

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Wed Mar 08, 2017 6:38 pm

The iron test result is a ferritin test result.
I never took requip, mirapex and neupro together. I took them independently of each other. I stop taking requip as it made me nauseous and gave me sweats. mirapex is fine but it loses effectiveness. The neupro is 24 hour.

I have been tired my whole life yet my memory has been sharp as a tack until I started taking medications. All of them negatively effect cognitive ability and most people question me though I am the one taking the meds.

I can only use the sleep apnea mask if I am really tired but most nights I wait till the kids go to sleep, grab a snack and go back to bed.

I am at the point where I would like to stop being a guinea pig and take a medication that is works and is genuinely prescribed with the understanding it will treat the symptoms.

badnights
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Re: RLS; Now Stable

Postby badnights » Thu Mar 09, 2017 8:57 am

I am at the point where I would like to stop being a guinea pig and take a medication that is works and is genuinely prescribed with the understanding it will treat the symptoms.
How I wish that were possible!

Hang in there, though. We can work together to try to figure things out. There are ways to make it better (not perfect, not like no-RLS, but much better).

Do you think you're augmenting? Or have augmented in the past?
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

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Thu Mar 09, 2017 11:44 am

I dont think so. Despite the fact ive been on three 50mg ultram for two years.

badnights
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Re: RLS; Now Stable

Postby badnights » Thu Mar 09, 2017 9:49 pm

The Ultram is not the problem. Augmentation from Ultram has only been anecdotally documented in I Think 2 or 3 cases. The problem is the Neupro now, and the Mirapex and Requip before. They are all dopamine agonists, and augmentation is more likely the higher the dose. Your Mirapex and Requip doses were pretty high for WED/RLS. How long did you take Requip?

If you are augmented, then dealing with the augmentation would mean lower doses of meds and possibly your memory problems might resolve.

Another option is to switch the tramadol for a different opioid. They all have different side effects and memory loss won't be an issue for you with a different one eg. hydromorphone or hydrocodone. Even codeine, but it might not be potent enough.
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

IThinkImInTorture
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Fri Mar 10, 2017 12:23 am

I took requip on and off for a few years less times than more. So, augmentation is an issue as I am used to the current dosage of Neupro, not Ultram? I am really confused.

badnights
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Re: RLS; Now Stable

Postby badnights » Fri Mar 10, 2017 2:03 am

I am not sure if augmentation is an issue, but it is so common that it might be. It sounds like you didn't take Requip steadily, so maybe there was not time for you to augment.

We might be able to make a pretty good guess with enough information. Think back to how your symptoms were when you first started Requip. Sometimes the disease just gets worse, but usually augmentation happens faster and is more extreme. Compare your symptoms when you first started to when you went off Requip. WWre your symptoms starting earlier in the day? Had they spread to other body parts (like: it was just your legs at first but then it was your arms too)? Were they more intense? Did they start up sooner after you sat down or lay down? Did they start to bother you when you were standing, too?

If these things happened, you were probably augmenting on the Requip. If you haven't had a 10-14 day break from meds since then, you might still be augmented. But it sounds like you've been on and off meds? How long were you on Mirapex? Was it on-again off-again too?

If so, maybe you haven't augmented.
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

IThinkImInTorture
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: RLS; Now Stable

Postby IThinkImInTorture » Fri Mar 10, 2017 2:11 am

I was steady in mirapex for six months with ultram in an attempt to see if mirapex could replace tramadol as the sole effective low side effect treatment. Nothing works on its own, all need tramadol.
My rls happens when I start to fall asleep I have to get out of bed. After taking the meds i can notice they wear off before I leave work at 5 as I get antsy and leave early.


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