What else should I be trying? I'm at a loss.

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.

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stockton2malone2
Posts: 41
Joined: Fri Dec 14, 2018 3:11 pm

What else should I be trying? I'm at a loss.

Post by stockton2malone2 »

Pramipexole (Mirapex) worked for about 3 years before augmentation really kicked off. I now have issues getting to sleep every night, and can only really get to sleep once I'm so exhausted my eyes won't stay open. And when I do sleep, the quality is generally garbage. RLS has ruined my quality of life to the point that I can barely take care of myself, and it doesn't seem to be going anywhere.

Since then I've also tried:
Gabepentin
Horizant
Ropinirole
Neupro
Xanax
MMJ

Unfortunately, none have worked long term. I'd prefer not to mess with opiods, because I expect a repeat of what happened with Xanax i.e. ever increasing doses just to feel OK, but maybe that is the answer.

Any suggestions on what to try next?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What else should I be trying? I'm at a loss.

Post by stjohnh »

stockton2malone2, Welcome to the RLS community. You have come to the right place. There are lots of knowlegable freindly people here who have lots of experience with RLS problems.

Unfortunately, your description of your problems is very common. What medicines are you currently taking and what doses?

I understand your reluctance to consider opioids, however problems with steady dose increases are far less common for people with RLS than for those that use them for pain or recreation.

The reality is that you will almost certainly need opioids at least temporarily to get out of the augmentation cycle with the pramipexole. You need to get off the pramipexole for a while to reset the dopamine receptors so that you can begin more effective treatment.

You haven't mentioned iron treatments. You sound like an ideal candidate for intravenous (IV) iron treatments. The RLS experts published a consensus paper last year recommending IV iron treatment for nearly all people with worse than mild RLS. Unfortunately, resistance by hematologists has made the use of IV iron more difficult for other doctors than expected.

You certainly need an iron test (ferritin) if you haven't had it.

Additionally, there are two distinct sets of RLS symptoms that are only partially related: urge-to-move (jumpy legs) and sleep. The urge to move can be completely controlled but an RLS patient still may not be able to sleep.

The medicines that help RLS patients sleep are different than for most people with insomnia. Regular sleeping medicines almost never work. The ones that help with some consistency are gabapentin (and relatives Lyrica and Horizant) and medical marijuana (specifically THC). While high CBD strains are frequently recommended, most people with RLS only get better sleep if there is substantial THC in their marijuana.

How much experience does your doctor have treating RLS with augmentation? If none, then you probably need a specialist to help you.
Blessings,
Holland

stockton2malone2
Posts: 41
Joined: Fri Dec 14, 2018 3:11 pm

Re: What else should I be trying? I'm at a loss.

Post by stockton2malone2 »

I currently take Wellbutrin XL 300mg. I stopped taking pramipexole about 6 months ago.

I've had my iron levels checks in the past and they were normal, but it has been over a year.

The gaba drugs make me incredibly depressed unfortunately, and aren't all that effective either. MMJ was helpful in getting to sleep for a few weeks, but eventually the spasms came back just like before.

Both my GP and my neurologist don't really have any experience with RLS. I looked into the specialist centers, but they're booking out for July. I can't seem to find a doctor anywhere near me in Pittsburgh with real experience dealing with this issue.

Polar Bear
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Re: What else should I be trying? I'm at a loss.

Post by Polar Bear »

You say that one year ago your iron levels were normal.
Please bear in mind that it is not ordinary iron levels that we are talking about (post of stjohnh).
It is your ferritin serum iron levels that are vitally important, this test isn't usually done in normal blood works, please ask for this ferritin test to be done.
Also bear in mind that a ferritin level of 20 may be considered as normal but this is not the case for us RLS sufferers, we need it up around 100, sometimes even higher.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Location: Colorado Springs, Colorado

Re: What else should I be trying? I'm at a loss.

Post by Rustsmith »

stocton2malone2, several years ago I was like you and would not have been willing to consider opioids. I was taking gabapentin to control migraines and either pramipexole or Neupro for my RLS. The gabapentin didn't help with my RLS except it helped me fall asleep so long as the dopamine agonists were working. Then I went through augmentation, first on pramipexole and then Neupro. For a variety of reasons, I ended up having severe augmentation for about six months and was desperate for something that would help me get more than my average of 3.5 hrs of sleep. So I started on the lowest dose of methadone available. That worked wonderfully for about 2.5 yrs with no reason to increase the dose, then I developed a side effect that required me to switch. I am now taking Tramadol ER but expect my doctor to switch me back to methadone when I see her next month.

The important point is that unlike the dopamine agonists, I never had any need to increase the dose with either opioid. That is true of almost all of us, but there are a limited number of exceptions. It is also very important to realize that RLS is treated with low doses of opioids. As an example, I was taking 5mg of methadone. The dose used to treat recovering heroin addicts is 80 to 100mg. The limited number of studies of the use of opioids for RLS that are being done have shown that a need to increase the dose over time is not very common.

As for finding a doctor, if you cannot find a specialist who is familiar with treating RLS, try to find one who is willing to learn from literature that you can share. This could be your current GP. As for the specialist centers, your experience is not unusual simply because the demand for their time is so great and there are not enough doctors to go around. Have you tried calling the neurology department of any nearby medical schools? My current doctor is not at a Quality Care Center even though she is involved in RLS research. I found her at the nearest large medical school, which is over 100 miles away. She designs my treatment and my PCP (who is learning from me) takes care of writing prescriptions for whatever she says that I need to take. I see my specialist every six months, which is about all I could expect because she is normally booked four months out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What else should I be trying? I'm at a loss.

Post by stjohnh »

Hmmm... So you are taking only Wellbutrin? Nothing for RLS? Do you have a strong urge to move your feet in the evening when sitting or lying down? If so, does the feeling go away when you get up and walk around?

I'm a little confused. It would be rare for a person with fairly severe RLS to manage on no meds for RLS. Not impossible, but unusual. You mention spasms. Where are they and are they the most prominent symptom of RLS for you?
Blessings,
Holland

srgraves01
Posts: 106
Joined: Wed Apr 24, 2013 4:34 am

Re: What else should I be trying? I'm at a loss.

Post by srgraves01 »

I would suggest a strategy of finding two meds and alternate between them. For example find an opioid that works and if Xanax worked for you, you could use that as your second med. Taking one or more drug holidays can help you reduce the dose you need to take. Also try to use other methods such as foam rolling and massage stick or hand massager. It will be a learning process to determine which muscles need massaging. This can often by itself get you through part of a night; and if used multiple times can sometimes help you get through an entire night without meds. Stretching can also sometimes be helpful. For the first 15 years that I had RLS the only method I used to cope with it was stretching my calves prior to bed and multiple times a night.

Good luck

Steve

stockton2malone2
Posts: 41
Joined: Fri Dec 14, 2018 3:11 pm

Re: What else should I be trying? I'm at a loss.

Post by stockton2malone2 »

stjohnh wrote:Hmmm... So you are taking only Wellbutrin? Nothing for RLS? Do you have a strong urge to move your feet in the evening when sitting or lying down? If so, does the feeling go away when you get up and walk around?


Currently using MMJ and gabapentin for my RLS. I switch back and forth between the two currently. Unfortunately, they only works to blunt things a little. It still takes me several tries to fall asleep (i.e. I give up and go do something else for a few hours), and quality is terrible. So, they're a bandaid for right now.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What else should I be trying? I'm at a loss.

Post by stjohnh »

What happens if you take the MMJ and gabapentin on the same night? What dose of gabapentin are you taking?

Have you considered kratom?

Also people say poor sleep.. does that mean trouble falling asleep, staying asleep, early morning awakening, or feeling bad during the day? Treatment is different for different sleep problems.
Blessings,
Holland

QyX

Re: What else should I be trying? I'm at a loss.

Post by QyX »

You can't compare benzodiazepines like Xanax with opioids.

Yes, you can develop tolerance to opioids and might need to increase your dose but it is much easier to manage tolerance in opioids then it is with benzodiazepines.

If you have really severe RLS, opioids are your only option long-term (in my opinion).

You can also consider trying Cannabis but this is a complicated issue I don't know much about and I just started learning.

You have also tried a lot of drugs that are normally used for severe RLS. There are two antiepileptics who are not that commonly used for RLS. I had great success with Carbamazepine. Unfortunately it has some weak SSRi effects which forced me to stop the drug after about 5 years. Now I take Oxcarbazepine, the drug is similar to Carbamazepine but doesn't have its SSRi effects and its analgesic properties are not as potent as those of Carbamazepine.

stockton2malone2
Posts: 41
Joined: Fri Dec 14, 2018 3:11 pm

Re: What else should I be trying? I'm at a loss.

Post by stockton2malone2 »

That's good news about the opiods at least. I'll ask about that at my next appointment in January.

As for my poor sleep...RLS makes it hard for me to get to sleep, usually requiring several tries of a couple hours. I stay asleep for a decent amount of time (usually 4-6 hours), and sometimes for much longer, but it rarely feels very restorative. I've had several sleep studies and all showed PLMD. I wake up ready for bed. If I'm lucky my body will let me nap for a few hours, but usually that is a lost cause.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What else should I be trying? I'm at a loss.

Post by stjohnh »

stockton2malone2 wrote:That's good news about the opiods at least. I'll ask about that at my next appointment in January.

As for my poor sleep...RLS makes it hard for me to get to sleep, usually requiring several tries of a couple hours. I stay asleep for a decent amount of time (usually 4-6 hours), and sometimes for much longer, but it rarely feels very restorative. I've had several sleep studies and all showed PLMD. I wake up ready for bed. If I'm lucky my body will let me nap for a few hours, but usually that is a lost cause.


PLMD is not the same as RLS. Most people with RLS have PLMD, but many people without RLS also have PLMD. PLMD is diagnosed by a sleep study. RLS cannot be diagnosed with a sleep study. The current better name for PLMD is actually PLMS (Periodic Limb Movements of Sleep) and it occurs ONLY during sleep. Legs jumping when awake is not PLMS.

Exactly what symptom keeps you from falling asleep? Do you have a strong urge to move your feet in the evening when sitting or lying down? If so, does the feeling go away when you get up and walk around?

I ask because while you probably have RLS, it's possible that your doctors have misdiagnosed RLS when what you actually have is PLMS alone.

You said your doctors don't have much experience with RLS. There is a great book, "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. It is readable even if you are not a doctor. If you doctors are willing to learn, you might buy them a copy. $40 on Amazon.
Blessings,
Holland

Chrisblis
Posts: 1
Joined: Sun Apr 23, 2017 1:16 am

Re: What else should I be trying? I'm at a loss.

Post by Chrisblis »

I just went on this site looking for a doctor in Pittsburgh. Your post is several years old. Did you ever find a Pittsburgh doctor for your RLS.

ViewsAskew
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Location: Los Angeles

Re: What else should I be trying? I'm at a loss.

Post by ViewsAskew »

Chrisblis wrote:
Thu Jul 30, 2020 9:02 pm
I just went on this site looking for a doctor in Pittsburgh. Your post is several years old. Did you ever find a Pittsburgh doctor for your RLS.
I hope that the original poster responds - I just looked and they haven't been on the site for 7 months, so they may not. It is so frustrating to need a doctor and to not be able to find one.
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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