Is your DA causing augmentation?

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.
QyX
Posts: 702
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Is your DA causing augmentation?

Post by QyX »

I think you will have a hard time finding such a doctor. Never heard of any patient here in the forum who had a RLS specialist who was doing tele appointments. I hope I am wrong though.

Something that could fix your issues until you find a proper doctor is Kratom. You can order it online and it works like a medium strength opioid and can treat and relief significant RLS symptoms. Additionally you can supplement the effects with iron tablets and avoid potential RLS triggers like caffeine.

An alternative to Kratom would be marijuana but when you have never used marijuana before, you should be careful and start a very low dose to avoid unpleasant psychotropic side effects. Kratom would certainly be the safer bet.

In any case, what you need is a RLS specialist who can prescribe opioids. Low dose Methadone or extended release Oxycodone looks like the most appropriate treatment option. Especially Methadone is cheap when you don't have insurance. But for a prescription, you would need to see a real RLS specialist like the ones who work with the RLS foundation.

Until then, I think you will be able to survive and function with Kratom.

I really hate giving those kinds of "advice" but in your situation I can't think of anything else. Also I have no idea what your options are when you don't have insurance since I am living in Germany.

In any case, welcome to the forum! You will meet lots of wonderful and nice people here. If you give it time you will most likely find a solution for your issues.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is your DA causing augmentation?

Post by Rustsmith »

Rebeccalee1991, in addition to what Qyx has suggested, do you know what your iron levels are like? RLS is caused by low iron in the brain but there are several reasons why this can happen. Many of us have low iron stores in our body (as measured by ferrritin levels in the blood). The first step in addressing this for those with low iron is usually taking an oral iron supplement such as iron sulfate pills combined with vitamin C on an empty stomach. But this is not something that you should do without medical supervision because too much iron can be harmful. But this can also take a while to happen since oral iron is only slowly adsorbed, so it can take weeks or months to help if your iron levels are very low.
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.

badnights
Moderator
Posts: 5628
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Is your DA causing augmentation?

Post by badnights »

Rebeccalee1991 the best thing for you will be to learn as much as you can about this disease. There are hardly any actual WED/RLS specialists in the world, let alone ones who do phone appointments. Most of the doctors who know anything about WED/RLS know only a little bit - just enough to be dangerous, as the saying goes; just enough to prescribe a dopamine agonist, which will eventually cause augmentation. How long ago did you stop the Requip and what dose were you taking?

- I agree that you should order kratom (more on that below).

- You could also get your gabapentin dose raised if you're not having side effects; you could go up to at least 1800 mg daily iirc - I think the official max is actually more than that. That said, it's not usually effective for severe RLS/WED on its own.

- Some people combine gabapentin (or Horizant or Lyrica) with a dopamine agonist, but then you're opening the door to augmentation. You can reduce the risk of augmentation by keeping the dopamine agonist dose as low as possible (don't try to cover your symptoms completely) and - this is important- by raising your serum ferritin over 100 ug/mL.

- Some people combine gabapentin or another anti-convulsant with an opioid, to keep both the opioid and anti-convulsant doses low.

- Getting your iron tested is critical. Your doctor probably won't know what to test for, but a basic iron panel PLUS ferritin is what you need (iron, total iron binding capacity (TIBC), transferrin saturation, and ferritin). Ferritin less than 75 has been correlated with increased risk of augmentation in patients on dopamine agonists, and with greater severity of RLS/WED. Most specialists now say our ferritin should be over 100, although some labs will label anything over 20 as "normal". The very few specialists who are pioneering the treatment of WED/RLS with intravenous infusions of iron seem to think that ferritin concentrations up to 300 are ok in WED/RLS patients, if that's the level at which their symptoms go away.

As rustsmith said, don't go taking iron without getting the ok from your doctor that it will do no harm. Your doctor may say it won't help you, if s/he is unaware of the relevant science, but what you're looking for is whether it will harm you. If your ferritin is lower than 100, ask if taking iron supplements will harm you. Because they could very well help you. Some of us can take less medication by taking iron. Others have stopped medication completely by treating with iron (IV or oral).

-Watch your triggers. Sugar? Processed foods? Coffee? Red wine? Grains? Diet can play an important role but there are no hard and fast rules that apply to eveyone.

EDIT cuz I magically submitted without clicking the Submit button and I wasn't finished - -

I suspect you are so destroyed by this disease that, at this point, you just want it all to STOP. And you don't want to hear that you have to stay on top of things and look out for yourself because the doctors don't exist who will do the thinking for you. But I'm afraid that's the way of things, so use what little energy you have to learn everything you can about RLS/WED; then you can help your doctors learn what they need to know to care for you properly.
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.

Rebeccalee1991
Posts: 10
Joined: Mon Jun 29, 2020 3:56 am

Re: Is your DA causing augmentation?

Post by Rebeccalee1991 »

Hello. I really appreciate the responses. I honestly feel like nobody understands me when it comes to RLS. It is very miserable and controls my life. I can’t even sit down and watch a movie At times I have to get up and pace the floor. I have gotten my iron checked and things last year. It all came out as normal.
I also tried to take magnesium. I will try to increase my gabapentin. Right at the moment I don’t have health insurance on my way having trouble getting it. I am pregnant so it’s really frustrating because me and my husband work And we make too much to get government insurance. But also paying 200 a month or more is too expensive for us. It is very annoying sorry to rant.
I do also feel that when I go to a regular doctor and they will not understand what to do and try to put me on a medication that won’t work. Some doctors are very not interested in giving things needed I feel like. If I can’t make it to an RLS speciality

Rebeccalee1991
Posts: 10
Joined: Mon Jun 29, 2020 3:56 am

Re: Is your DA causing augmentation?

Post by Rebeccalee1991 »

The information that you gave me is extremely helpful thank you so much!

QyX
Posts: 702
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Is your DA causing augmentation?

Post by QyX »

Pregnancy in itself can cause and dramatically worsen RLS symptoms.

I think you really really need to see someone who knows what he is doing. Can maybe your family support you in finding the right doctor?

I really wish you would have mentioned this in the first post because that fact carries some weight regarding what drug treatments are in your situation currently appropriate or not. Or maybe you can look for some organisations online that help pregnant woman without insurance.

Rebeccalee1991
Posts: 10
Joined: Mon Jun 29, 2020 3:56 am

Re: Is your DA causing augmentation?

Post by Rebeccalee1991 »

The information you provided really helped me and it’s good to know those things for when I am not pregnant!
I have tried doing that and I have had no luck I guess private health insurance disqualifies you when your pregnant.🤷🏻‍♀️ I will be calling around tomorrow and do some more searching and looking into it.
My OBGYN said that gabapentin is okay to take when pregnant I told him I take 3 at one time so 900 mg
He asked if I could take less but it’s been so bad I have taken more tonight I’ve taken 4 last night I took 5.
Also, my husband doesn’t understand RLS at all he isn’t in support of me taking opiates. It’s like I’m dealing with it alone.
I’m going to do some research on why it can be worse when pregnant. I am restless all throughout the day and night when I take the gabapentin after like 2 hours when it gets in my system I have like an hour period where I can relax. It’s sad

Rustsmith
Moderator
Posts: 4712
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is your DA causing augmentation?

Post by Rustsmith »

Rebeccalee, one of the reasons why RLS can be worse during pregnancy has to do with your iron levels. Increasing total body iron (as measured by ferritin) that is low is the first form of treatment that is recommended for anyone's RLS. Iron levels often decrease during pregnancy because your body is giving the baby priority to any iron that you get from food or supplements. This means that your iron can decrease, especially during the third trimester. There are also a couple of other changes that occur during the late stages of pregnancy that resolve themselves shortly after birth. So the good news is that your RLS should get better after just days after birth. It probably won't go away, but your RLS should significantly improve.
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.

Rebeccalee1991
Posts: 10
Joined: Mon Jun 29, 2020 3:56 am

Re: Is your DA causing augmentation?

Post by Rebeccalee1991 »

Thank you so helpful! What are your thoughts on going to a doctor at a sleep disorder center? There is one close by in the next town over. Have you heard of people getting good treatment there for RLS?

QyX
Posts: 702
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Is your DA causing augmentation?

Post by QyX »

Rebeccalee1991 wrote:
Tue Jul 14, 2020 3:45 am
Thank you so helpful! What are your thoughts on going to a doctor at a sleep disorder center? There is one close by in the next town over. Have you heard of people getting good treatment there for RLS?
Sounds like your best option in that point. If they have neurologist at the sleeping center, they will most likely know the fundamental basics of RLS.

Rustsmith
Moderator
Posts: 4712
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Is your DA causing augmentation?

Post by Rustsmith »

Have you heard of people getting good treatment there for RLS?
If you mean one of the Foundation Quality Care Clinics, then the treatment there will be some of the best in the country.

However, if you mean a sleep clinic that isn't a Quality Care Clinic (QCC), then the treatment will depend upon the experience of the doctor at that clinic. I was personally first diagnosed by the staff at a clinic that was not a QCC. The treatment there was good, but eventually had to switch to a QCC because they did not understand augmentation. I have also had sleep studies at non-QCC clinics where it was obvious that they did not know very much about RLS.

So, if this is not a QCC, your best bet would be to do a bit of investigation of the doctor in charge of the clinic to see if the doctor's bio indicates any experience with RLS. You can also call the clinic and ask to speak with a nurse or sleep tech and ask them how much they understand RLS. The key would be a question about augmentation. If they know about augmentation and it's treatment, then you would probably be fine there.
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.

badnights
Moderator
Posts: 5628
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Is your DA causing augmentation?

Post by badnights »

"rebeccalee" wrote:My OBGYN said that gabapentin is okay to take when pregnant I told him I take 3 at one time so 900 mg
He asked if I could take less but it’s been so bad I have taken more tonight I’ve taken 4 last night I took 5.
I don't know a lot about it but as I understand, gabapentin is not the best thing during pregnancy (e.g. Results of one study: Although the rates of major malformations were similar in both [the control and the gabapentin group], there was a higher rate of preterm births and low birth weight <2,500 g in the gabapentin group. From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662323/.) Suboxone is typically used in WED/RLS pregnancies. The baby has to be weaned off it after birth, but apparently that's relatively painless, and as I understand it has few or no lasting effects. I am not very knowledgeable about it, but suboxone might be better for baby than the neuroleptic. Has your doctor suggested it?

You might want to check the Special Populations forum - use the advanced search tool to search for pregnan in the Special Populations forum. Or just browse it.
Steve wrote:The key would be a question about augmentation. If they know about augmentation and it's treatment, then you would probably be fine there.
Furhter to that, if they say they would treat augmentation by increasing the dose of Mirapex or Requip, it might be best to avoid them :). Likewise, if they say they would check your ferritin and get it above 100, good, if they don't mention iron, bad; especially if they don't mention iron for an augmenting person.
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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