What I learned on my RLS-Path so far ...

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.
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QyX

What I learned on my RLS-Path so far ...

Post by QyX »

If you augment on Dopamin-Agonists ... don't waste your time ... try Opioids. In general they seem to be a much better alternative then antiepileptics like Gababentin or Pregabaline but these two drugs might work for some of us.

If Opioids activate you and you can't sleep because of the activation try adding Clonazepam.

Clonazepam has been used to treat RLS since the 1960s. Clonazepam is a Benzodiazepine. Long term use can result in Depression and Anxiety. If this happens but Clonazepam lets you sleep it makes sense try adding an antidepressent. Either an SSRi (Escitalopram would be my recommendation) or Elontril.

You also could try another Benzodiazepine. After a long period of research and discussion with Physicians Benzodiazepines are an real option for RLS-Patients. There are lot on the market and they all work a bit different. Clonazepam is the one which has proven to work best for RLS in general.

Personal experience:

I augmented on Pramipexol and any other classic DA and L-Dopa.

The SSRi however makes it possible for me to take Pramipexole. It "kills" the augmentation and reduces the sexual side effects of SSRi. This is my special experience but it could work for others, too.

In general I think it is the best to take a Benzo if you suffer from opioid activation at night. You just need to find the right one. Most Benzos dont work for me but Clonazepam does magic.

Consider Stimulants like Methylphenidat/Ritalin. They work similiar then DAs but you dont risk augmentation. I use a Stimulant against daytime tiredness and as a daytime DA.

Works for me.

If you augment it makes sense to try different combinations. Maybe one drug can kill the effects of augmentation. For me it was the SSRi Escitalopram.

Having a working DA can improve sleep a lot.

If you augment don't give up but adding an opioid seems to me is the only real option.

badnights
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Re: What I learned on my RLS-Path so far ...

Post by badnights »

QyX you have a lot of useful insights and ( unfortunately :( ) a lot of experience. Some other people here have been using clonazepam/Klonopin successfully for RLS/WED for years, alone or in combination, but others have had problems with severe drowsiness after long-term use, and lack of effectiveness against the sensory abnormalities. It has some anti-anxiety properties, which might be why it's useful against RLS/WED. It does not seem to actually affect the abnormal sensations caused by the disease, but it certainly can help with the hyper-vigilance.

Commenting on some of your comments:
If you augment on Dopamin-Agonists ... don't waste your time ... try Opioids. In general they seem to be a much better alternative then antiepileptics like Gababentin or Pregabaline but these two drugs might work for some of us.
Yes, seems to be true. Dr B says this also.

If Opioids activate you and you can't sleep because of the activation try adding Clonazepam. ......... .. In general I think it is the best to take a Benzo if you suffer from opioid activation at night. You just need to find the right one. Most Benzos dont work for me but Clonazepam does magic.
Or one of the Z-drugs. They have worked fairly well for me, and don't cause next-day drowsiness (for me anyway). I wonder how many of us are activated by opioids? I used to think it was just me and Ann.

Clonazepam is a Benzodiazepine. Long term use can result in Depression and Anxiety. If this happens but Clonazepam lets you sleep it makes sense try adding an antidepressent. Either an SSRi (Escitalopram would be my recommendation) or Elontril [buproprion/Wellbutrin]. ........ The SSRi however makes it possible for me to take Pramipexole. It "kills" the augmentation and reduces the sexual side effects of SSRi. This is my special experience but it could work for others, too.
This is very interesting, and any of us with tendencies toward depression, not just those on long-term clonazepam, might want to keep this possibility in mind - that an SSRI might help prevent augmentation. Perhaps augmentation is related to a serotonin-dopamine imbalance.

Consider Stimulants like Methylphenidat/Ritalin. They work similiar to DAs but you dont risk augmentation. I use a Stimulant against daytime tiredness and as a daytime DA.
The stimulant idea is also an interesting one, that I have heard here before. Perhaps there is a subset of patients that it will work on. I take Modafinil, which belongs to a different class of stimulants than Ritalin. I took it to counteract my excessive tiredness and to decrease my use of coffee, which was increasing my WED sensations. But it has consolidated my wake into the daytime and my sleep into the nighttime. I don't have as much problem being tired at bedtime nor being awake in the morning. I don't know how it accomplishes this, but I like it. I don't find that it affects the sensory symptoms for better or worse.

If you augment it makes sense to try different combinations. Maybe one drug can kill the effects of augmentation. For me it was the SSRi Escitalopram.
Excellent advice. Keep trying to find something that works for you!

Having a working DA can improve sleep a lot.
I find this as well. My main medication is opioid, but throwing in a pramipexole or a levo-carbidopa now and then (not daily! otherwise I would augment!) allows a good sleep that night.

If you augment don't give up but adding an opioid seems to me is the only real option
So far, this is very true. Until new knowledge is gained or by chance a different drug is found to work, the opioids are the only things that will consistently stop the symptoms. Unfortunately, for some people the side effects are worse than the symptoms.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mistral27
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Re: What I learned on my RLS-Path so far ...

Post by mistral27 »

Some years ago I was prescribed SSRI's (3 types) for panic attacks. I had to give them up because they exacerbated RLS .

ViewsAskew
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Re: What I learned on my RLS-Path so far ...

Post by ViewsAskew »

mistral27 wrote:Some years ago I was prescribed SSRI's (3 types) for panic attacks. I had to give them up because they exacerbated RLS .


It happens to between 2 and about 20%, depending on the drug. The good news is that most people can take at least one of them. The bad news is that you might have to try several - which can be no fun.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: What I learned on my RLS-Path so far ...

Post by badnights »

Some years ago I was prescribed SSRI's (3 types) for panic attacks. I had to give them up because they exacerbated RLS .
I guess after trying 3 without success, you pretty much didn't want to touch them again. But if you really need something, there is probably one that will work for you without worsening the WED/RLS. You would have to weigh the cost of experimenting against the cost of doing without treatment for it.

Besides SSRIs, there are benzodiazepenes, which can be very effective against anxiety and panic disorders, eg. ativan/Lorazepam. The sedative effects might make them unattractive for daytime use, though.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX

Re: What I learned on my RLS-Path so far ...

Post by QyX »

mistral27 wrote:Some years ago I was prescribed SSRI's (3 types) for panic attacks. I had to give them up because they exacerbated RLS .


That doesn't surprise me. It is well known that SSRi can cause and worsen RLS.

My experience towards this isse is the following:

When I started the SSRi Escitalopram I noticed that it was causing RLS-symptoms. This somehow caused that I started experimenting with Pramipexol again and noticed that when I take Pramipexole at night I was able to take Escitalopram in the morning. After some days of taking Pramipexol I developed the feeling of augmentation again and I woke up early in the morning. Because I was awake I took my Escitalopram and magic happened ... the feeling of augmentation went away and I was able to sleep again.

As badnights already wrote, erhaps augmentation is related to a serotonin-dopamine imbalance.

At the beginning of the Pramipexole-Escitalopram combination I was very sensitive to the augmentation and I was taking Escitalopram at 3 a.m or 4 a.m. in the morning to stop the augmentation caused by Pramipexole but after like 6 weeks it became more easier. Now it doesn't matter when I forget taking my Escitalopram in the morning. I can even take it at 1 p.m. or later because my brain seems to be so balanced out that a delay of some hours doesn't really matter.

If I would be a Physician already, I would do a study with all patients who augmented on the DAs and add an SSRi.

For me that Pramipexole <-> Escitalopram interaction is really magic and doing wonders.

Together with the opioids I finally got a good sleep, at least most of the time.

badnights
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Re: What I learned on my RLS-Path so far ...

Post by badnights »

I would love to know if anyone else who was augmenting had an SSRI AD added noticed it controlled the augmentation. Also, why do people who are already taking SSRIs and who start augmenting not have that benefit? There are questions to be answered, for sure.
Beth - Wishing you a restful sleep tonight
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Chipmunk
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Re: What I learned on my RLS-Path so far ...

Post by Chipmunk »

I wonder if it's unique to Escitalopram? I haven't found that being on an SSRI inhibits augmentation personally, but maybe the doses weren't right. What dosage of each are you on?

I have been reading a lot lately about serotonin and dopamine levels and it seems that taking something like 5-HTP (which ups serotonin levels) can sort of "burn out" your dopamine system because the increased serotonin upsets the balance. I was horrified because that certainly could be the cause of my WED - it started after I started on Prozac after my second daughter was born. I can't say I should have done without the Prozac, however. I probably wouldn't be here right now had I not taken it, so it's sort of a moot point for me. But it gives me pause about recommending anti-depressants for others, and/or increasing my own dose.
Tracy

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badnights
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Re: What I learned on my RLS-Path so far ...

Post by badnights »

I was horrified because that certainly could be the cause of my WED
I think mine was permanently worsened by augmenting on ropinirole. Ann has the same feeling about a DA. It's odd to think I might have instigated this disaster by taking a medication - but you make the best choices you can at the time. I am not recommending that my (20+) son take anything for his WED, precisely because of what might happen.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: What I learned on my RLS-Path so far ...

Post by ViewsAskew »

badnights wrote:
I was horrified because that certainly could be the cause of my WED
I think mine was permanently worsened by augmenting on ropinirole. Ann has the same feeling about a DA. It's odd to think I might have instigated this disaster by taking a medication - but you make the best choices you can at the time. I am not recommending that my (20+) son take anything for his WED, precisely because of what might happen.


I truly believe that ANY drug can be the initial cause of worsening. Sure, we already likely had the gene and maybe we had a certain level of symptoms. But not like what happened after using a drug!

Until we know a LOT more about how this works, we won't know if the drugs simply coincided with the increase, if the drugs fast-forwarded us to where we would have gotten eventually anyway, or that they actually created a worse situation.

The problem I have with assuming the approach QyX is using will work for everyone is that our brain chemistry is all different in the first place. Sure, there are likely patterns that are similar. But, my guess is that this is very specific to QyZ's chemistry and will not necessarily work for everyone else. It's possible that there is a combination out there that would likely work for me to prevent augmentation on a DA, too, but it may be very different that this combo. Besides, not sure I care since the side effects of the DA are almost worst than the augmentation it causes. Now, if an AD could prevent those side effects, THAT would be a different story. Then even if it didn't prevent the augmentation, I could take a DA 2 days in a row, then an opioid for one, and likely not augment anyway, but wouldn't have the depression and myriad other side effects that make it untenable to use.
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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