Is this really my new "normal"?

Use this forum to discuss any issues associated with Augmentation
aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Is this really my new "normal"?

Postby aacoleman » Mon Apr 29, 2019 3:54 pm

Been suffering with RLS since I was a baby. As a toddler I remember lying awake crying in the middle of the night while my mother massaged my legs. They thought I had growing pains. I have never known what it is like to sleep next to another human being, because laying still more than a few minutes is excruciating. My RLS has been full-body for most of my life. I'm nearly 40 now, and I didn't even learn about RLS until I was in my late 20's.

Over the past 12 years, I have been on ropinerole, rotigotine (pills and neupro patches), gabapentin, pramipexole, ambien, clonazepam, seroquel, and others I can't remember.

I remember in my 20s one of the DA drugs that starts with an R gave me relief for about 20 minutes for the first time in my life. It was so shocking to finally feel what a normal human body feels like that I cried for about an hour... until I begin vomiting uncontrollably from a reaction to the medication.

Neupro worked decently well, but the patches gave me a localized reaction that caused my skin to itch and blister where the patch was applied.

Ambien was terrible. Clonazepam was terrible. Never again.

Seroquel really does help me sleep, unfortunately, like antihistamines and marijuana, it exacerbates RLS. So for the past 6 months I have been taking 200mg seroquel and started out at .5 mg pramipexole to counteract the effect. About 4 months ago, I had to bump up to 1mg pramipexole, and the last 2 months, I've been on 2mg pramipexole. Then I switched doctors and my new doctor freaked out about the high dose. Which led me to come here.

I didn't really understand augmentation before. However, these are my new symptoms:
RLS has gotten so bad that it is in my neck, arms, hands, everywhere, all day. Anytime I sit down my legs kick, even when driving.
In the afternoons I get suddenly, incredibly sleepy. Like I have to stop what I'm doing, can't function, and just lay down and pass out. I've never been able to sleep on demand, so this is a big change for me.
I need more and more medication to handle the symptoms.

So, be honest with me. Is this my new reality? The changes are permanent? And I can't ever again take the DA drugs? I'm thinking it might be time for antidepressants if that is the case.

stjohnh
Posts: 798
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this really my new "normal"?

Postby stjohnh » Mon Apr 29, 2019 4:19 pm

aacoleman wrote:... last 2 months, I've been on 2mg pramipexole. Then I switched doctors and my new doctor freaked out about the high dose. Which led me to come here...

I didn't really understand augmentation before...

So, be honest with me. Is this my new reality? The changes are permanent? And I can't ever again take the DA drugs? I'm thinking it might be time for antidepressants if that is the case.


Hi aacoleman,
Welcome to the RLS community. Here you will find people with all sorts of knowledge and experience with RLS. You will get advice and COMPASSION. People without RLS just really can't imagine how terrible this disease can be. Folks here "get it."
Blessings,
Holland

stjohnh
Posts: 798
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this really my new "normal"?

Postby stjohnh » Mon Apr 29, 2019 6:07 pm

stjohnh wrote:
aacoleman wrote:... last 2 months, I've been on 2mg pramipexole. Then I switched doctors and my new doctor freaked out about the high dose. Which led me to come here...

I didn't really understand augmentation before...

So, be honest with me. Is this my new reality? The changes are permanent? And I can't ever again take the DA drugs? I'm thinking it might be time for antidepressants if that is the case.


Hi aacoleman,
Welcome to the RLS community. Here you will find people with all sorts of knowledge and experience with RLS. You will get advice and COMPASSION. People without RLS just really can't imagine how terrible this disease can be. Folks here "get it."


Hi, I didn't get a chance to finish my post, so here is the rest of what I wanted to say:

You certainly augmented on the pramipexole, and I'm glad you found a doc that has more knowledge about the risks of high doses.

What meds are you currently taking?

I suspect you are still on the pramipexole. The bad news is you need to get off it completely before you can get better. This is an extremely unpleasant experience (torture is probably not too strong a word). The worst usually lasts about a week, then you will gradually get better.

The good news is that after you get the pramipexole out of your system you will be better than you are now, and future treatment will be more effective. Likely you will need an opioid like methadone.

I didn't see any mention of iron treatment in your introduction. There is other good news for you.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last as has been the case previously. If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

So the bottom line is: NO, this is not the new normal for you !!!
Blessings,
Holland

Rustsmith
Moderator
Posts: 3886
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Is this really my new "normal"?

Postby Rustsmith » Mon Apr 29, 2019 6:31 pm

In addition to what Holland has said, I would like to offer you a few more comments.

First, what did your new doctor recommend other than that you need to reduce your pramipexole dose? If the discussion touched on the use of an opioid, then your doctor is very knowledgeable about RLS and is well worth sticking with through thick and thin.

As Holland indicated, getting off of such a high dose of pramipexole is going to be very difficult. It is a lot easier if you can take an opioid to help cover the withdrawal period. Some doctors do not like to do this because they want to see what your current baseline RLS is like. So they don't want for you to go through pramipexole withdrawal followed by a shorter opioid withdrawal period. Personally, I don't understand this, but there are quite a few doctors who do this.

You also need to have a discussion with your doctor about what next? If your RLS wasn't too bad before you started with the pramipexole, then you might be placed on gabapentin, Horizant or Lyrica. These don't work for everyone, but the only other option is an opioid.

As for opioids, you might want to print off a copy of this paper, read it and then take it with you to share with your doctor. It was written by the leading RLS experts in the US to specifically address the use of opioids to treat patients who have been through augmentation and do not have any other options. It explains that addiction is not really an issue and that the use of opioids is proper treatment protocol in these situations.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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.

aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Re: Is this really my new "normal"?

Postby aacoleman » Mon Apr 29, 2019 8:02 pm

In response to the above replies;

I was currently on 200mg seroquel to help with sleep (the chronic insomnia from lifelong RLS has caused brain damage to my verbal memory center - did a sleep study and saw a neurologist and neuropsychologist, had MRIs etc). 2mg pramipexole and off and on I have taken 10-20mg of a newer drug called Belsomra that is an alternative to Ambien with little to no side-effects.

After reading the posts in this forum I have voluntarily ceased the pramipexole, and must consequently stop taking the seroquel as it exacerbates RLS. I am taking nothing but the Belsomra, currently.

This is the first time I have heard of RLS being a result of low brain-iron. I was under the impression that low levels of iron or potassium can cause RLS symptoms, but that those that suffered from a chronic form of the condition were a result of birth-defects of the dopamine-receptor part of the brain, similar to Parkinsons. Was I mistaken or has new information come to light in recent years?

Blood tests have shown my iron and other critical chemical levels are "normal".

I do not have access to a physician here who understands RLS. All of the literature on RLS has been provided by me to my providers, such as the Mayo clinic's recommendations on treatment.

I really have a fear of being on opiates. Realted to this, several years ago I had one doctor that had me on ambien for 2 years, much longer than is recommended, and another doctor who had me on clonazepam also for 2 years but I was able to wean off it it. I am loathe to undergo another "this drug will make you feel better, but *fine print* it'll also make you feel like a completely different person, cause mood swings, undesired side effects, and is addictive. I want to feel like "me", regardless of my suffering.

My RLS was already whole-body before starting the pramipexole. The worst side effect is that I must be medicated in order to get any decent sleep. Laying in bed is true torture for me. Most of my medications have been aimed at trying to help me sleep, rather than specifically addressing the RLS - which always seemed like an incurable, untreatable thing anyway. I have been on gabapentin as well, but the relief was minimal and the side effects included nausea. My last prescription for gabapentin was a year ago, at 100mg 3 times a day, and I recall it made me feel awful all day. I have also been prescribed horizant, lyrica, ropinerole, and rotigotine, with various results - none of which significantly improved my quality of sleep or of life.

I am glad to hear that the augmentation effects will lessen after stopping the DA drugs. I still feel helpless. The effects of chronic lack of sleep are as devastating, or even more so, than RLS. I am interested to understand more about the brain-iron information.

aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Re: Is this really my new "normal"?

Postby aacoleman » Mon Apr 29, 2019 8:43 pm

I read the brain-iron study, and went back and checked my most recent ferritin blood work. My most recent level was 169 ug/ml, with a saturation of 53%. Unfortunately, the study recommends against IV iron for patients with <300ug/ml but >45% saturation because of insufficient clinical trials.

Should I request my doctor test me and administer the IV therapy anyway? Or is there a way to somehow bring down my saturation level?

debbluebird
Posts: 2023
Joined: Mon May 21, 2012 3:27 pm

Re: Is this really my new "normal"?

Postby debbluebird » Mon Apr 29, 2019 9:50 pm

I'm so sorry about your situation. I would say you might be able to take a DA again if you are careful. I took mirapex for 9 years before I augmented. Then the last year was hell until I found this site and learned about augmentation. Recently I was taking it again but only once a week. It would give me 2 nights of relief. Then this past week I took the last one sooner. On day 4 instead of day 7. Big mistake. I should have realized it was starting not to work. Now last night and today is hell. It will take a few days before everything calms down.
You should be able to take a DA again, but don't start increasing the dose. That's the first sign of augmentation. Take a break from it at that time, then maybe you'll be able to start again.
Some people here alternate with a couple of days with opioid and a couple of days with a DA.
Regarding opioids, again just take it slow. I was taking a low dose opioid along with four other meds when I was switched to methadone. It was wonderful. I was able to wean off of everything else. But for the first couple if months I had a side affect of nausea. Finally that stopped. Then after many years it started not to work.
My experience of having this for almost 40 years, is to take it slow with any drug. Never take more than a little and take breaks. I have to switch back and forth.
I'm not sure about the iron. Other people here should be able to answer that question.
Good luck. This site with these people really helped me. Mostly the people.

aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Re: Is this really my new "normal"?

Postby aacoleman » Mon Apr 29, 2019 9:56 pm

debbluebird wrote: I was taking a low dose opioid along with four other meds when I was switched to methadone. It was wonderful. I was able to wean off of everything else. But for the first couple if months I had a side affect of nausea. Finally that stopped.


I have little to no experience with opioids, other than vicodin for pain after surgeries. How does methadone make you feel? Does it change your mood and personality like benzos? Is it a bedtime-only type thing or an all-day thing? I'd like to hear impressions from someone who's experienced it with RLS.

stjohnh
Posts: 798
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this really my new "normal"?

Postby stjohnh » Mon Apr 29, 2019 10:29 pm

aacoleman wrote:After reading the posts in this forum I have voluntarily ceased the pramipexole, and must consequently stop taking the seroquel as it exacerbates RLS. I am taking nothing but the Belsomra, currently.


Did you stop today, or if not, how long have you been off the pramipexole?

aacoleman wrote:This is the first time I have heard of RLS being a result of low brain-iron. I was under the impression that low levels of iron or potassium can cause RLS symptoms, but that those that suffered from a chronic form of the condition were a result of birth-defects of the dopamine-receptor part of the brain, similar to Parkinsons. Was I mistaken or has new information come to light in recent years?

Blood tests have shown my iron and other critical chemical levels are "normal".


The iron link has been suspected for many years, but the information has solidified in the past 5 years. Summary: The BID (Brain Iron Deficiency) theory is confirmed by: Chemical analysis of the brains of dead people who had RLS, neurophysiologic tagging MRI studies of living people with RLS, animal models of several types, and beneficial responses to IV Iron (in addition to other evidence). The BID is thought to arise from genetic and epigenetic factors (your inherited DNA makeup, plus environmental effects causing greater or lesser expression of those genes). The genetic abnormalities seem to interfere with the transport of iron across the blood-brain barrier (the blood brain barrier helps protect the brain from toxic components in the blood). Too much iron is very toxic, and the body makes it close to impossible to get very high levels in the blood from oral iron, thus IV Iron is frequently required to overcome these obstacles to increasing brain iron. It is also why doctors are rightly hesitant to give IV Iron to those people who seem to have "enough."

If it has been over a year since your last ferritin test, I would ask for another. Be sure to avoid iron containing medications for 48 hours before the test.


aacoleman wrote:Most of my medications have been aimed at trying to help me sleep, rather than specifically addressing the RLS.
I am glad to hear that the augmentation effects will lessen after stopping the DA drugs. I still feel helpless. The effects of chronic lack of sleep are as devastating, or even more so, than RLS. I am interested to understand more about the brain-iron information.


Many people with moderate to severe RLS are more bothered by the sleep problems than the urge to move problems of RLS. The urge to move symptom is mostly mediated through the dopamine pathways, and the sleep problems are more a function of the glutamatergic pathways. I can give you a link to a very technical paper if you are interested, but you will need considerable knowledge of biochemistry and physiology to understand much of it.
Blessings,
Holland

debbluebird
Posts: 2023
Joined: Mon May 21, 2012 3:27 pm

Re: Is this really my new "normal"?

Postby debbluebird » Tue Apr 30, 2019 12:45 am

aacoleman wrote: I have little to no experience with opioids, other than vicodin for pain after surgeries. How does methadone make you feel? Does it change your mood and personality like benzos? Is it a bedtime-only type thing or an all-day thing? I'd like to hear impressions from someone who's experienced it with RLS.


Like I said I had nausea for a couple of months. After that I was fine. Initially I took it a couple of hours before bed. After a few years I developed hyper alertness. To resolve that, I took it earlier. Noon. Now I divide it around the clock, with smaller amounts. Two 5 mg tabs, I cut those in half, every 6 hours.
I would start out with 5 mg, cut in two. One at noon, and the other half before bed just to see how it feels.
I do know that some people feel tired during the day. I never felt that way.
Another problem is finding a doctor who will prescribe it. My primary doctor gives me my script.
After several years I had to add gabapentin. I refused to increase dose of methadone.
I have spasms and RLS.

aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Re: Is this really my new "normal"?

Postby aacoleman » Tue Apr 30, 2019 1:11 am

stjohnh wrote:
Did you stop today, or if not, how long have you been off the pramipexole?


It has been two days.

stjohnh wrote:Many people with moderate to severe RLS are more bothered by the sleep problems than the urge to move problems of RLS. The urge to move symptom is mostly mediated through the dopamine pathways, and the sleep problems are more a function of the glutamatergic pathways. I can give you a link to a very technical paper if you are interested, but you will need considerable knowledge of biochemistry and physiology to understand much of it.


Thank you. I appreciate it, but I don't think my two semesters of anatomy and phys would be sufficient. :wink: I was however able to completely understand your explanation above. It was very informative, very concise and easy to absorb. Thank you for that. You have helped immensely and I am grateful for it.

aacoleman
Posts: 6
Joined: Mon Apr 29, 2019 6:22 am

Re: Is this really my new "normal"?

Postby aacoleman » Thu May 02, 2019 9:39 am

It has now been 4 days and I am very close to giving up
and taking some of the pramipexole.

I think I have slept maybe 5 hours in the last 48 hours. My GP is being very difficult about even reading the RLS literature, wants to refer me to a neuro before any other treatment options are considered, and won't help me with the iron treatment, and are alarmed by the methadone.

I am considering either checking into the ER to try to speed up being able to get proper treatment, or taking the pramipexole again until I can find someone who can help me.

My symptoms now are no sleep, uncontrollable shaking from the rls, strange thoughts, inability to focus, inability to drive, etc. it's horrible. can't make it 10 days if doc won't help.

badnights
Moderator
Posts: 5186
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Is this really my new "normal"?

Postby badnights » Thu May 02, 2019 1:52 pm

I think if you know better what to expect, you can manage this pramoipexole withdrawal.

Expect no sleep for 36 hours, then maybe a half-hour or hour here and there. Expect grievous torture for 4 or 5 days before seeing a light at the end of the tunnel. Expect your hopes to lift at that point, rightly so, for the worst will be behind you, though there will still be days of awful stuff ahead, and perhaps weeks of bad stuff. But you will be sleeping more by then, and better able to cope mentally.

And understand that if you give in and take some pramipexole, you are prolonging the agony. As long as you have any inside you, your dopamine receptors cannot normalize.

I don't know if the ER is the right place, it would depend on who was there. If it got you a dose of opioid, so much the better. The problem is, you will look like a drug-seeker if you even mention opioid, because untreated WED/RLS - especially during DA withdrawal - looks like opioid withdrawals.
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.

stjohnh
Posts: 798
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Is this really my new "normal"?

Postby stjohnh » Thu May 02, 2019 1:59 pm

aacoleman wrote:It has now been 4 days and I am very close to giving up
and taking some of the pramipexole.

I think I have slept maybe 5 hours in the last 48 hours. My GP is being very difficult about even reading the RLS literature, wants to refer me to a neuro before any other treatment options are considered, and won't help me with the iron treatment, and are alarmed by the methadone.

I am considering either checking into the ER to try to speed up being able to get proper treatment, or taking the pramipexole again until I can find someone who can help me.

My symptoms now are no sleep, uncontrollable shaking from the rls, strange thoughts, inability to focus, inability to drive, etc. it's horrible. can't make it 10 days if doc won't help.


I agree with Beth (badnights). You are very likely to be at the worst day or maybe have already passed the worst day. It will likely get better from here (although much slower than you would like). Also restarting the pramipexole will, as she said, prolong the torture. I'm not trying to minimize your suffering, I have been through it, as have most of the folks here that have severe RLS, which is most of the people that post more than occasionally, and certainly all of the moderators.

Beth is also correct in not enthusiastically supporting the "check into ER" idea. If you do that, your chance of getting help is low. You will likely be sent home with referral and no medication help, or hospitalized for observation (but no medication help). Most doctors, even most neurologists, don't have enough experience with severe RLS and augmentation to provide effective help. The only thing that will actually help (without giving up and restarting pramipexole) is to take opioids (or kratom, which acts like an opioid). Your best chance of actual help for today/tonight is to find someone with a few left-over opioid tablets (vicodin, percocet, percodan, oxycodone, hydrocodone, norco, etc) from a prior injury or surgery. Taking opioids for a few days will not make it easy, just easier. Don't give up.

You do need to have a plan for your post-augmentatin/pramipexole treatment. Standard recommendations are: 1. Use long acting DA (this usually means Neupro patch). 2. Use gabapentin (or its relatives, Lyrica or Horizant). 3. Use opioids. You will need a cooperative doc to do any of those, although perhaps your primary would consider Neupro (since it is related to pramipexole) or gabapentin (since he likely has used it for other medical problems). I would phone today to get an appointment with a doc at one of the RLS Quality Care centers https://www.rls.org/treatment/quality-care-centers. You will likely have to travel and possibly wait up to a few months. But at least you know you will eventually get good care. If you can find good care outside of the Quality Care Centers you can cancel the appointment. It is difficult to find doctors with real experience treating RLS patients outside of the Quality Care Centers, but they exist. More likely, it is possible to find a caring doc that will listen to you and is willing to learn about how to treat RLS. You could start a new thread and ask forum readers for recommendations for a doc near you.

The real problem is that (with the exception of opioids) the above is only a partial solution for most. The reason is that Neupro is difficult to use and more than half of people using Neupro stop it in a few weeks or months due to severe rashes. Gabapentin usually provides some, but definitely not adequate, relief, and side effects (zombie feeling, depression, etc) limits the use as a single drug treatment to only a few people.

Many of us here have found that a combination of low doses of several meds works fairly will: ie tiny dose of pramipexole+gabapentin+kratom+THC. The other realistic alternative is opioids. Problem with that is finding a doctor that will prescribe them.
Blessings,
Holland

debbluebird
Posts: 2023
Joined: Mon May 21, 2012 3:27 pm

Re: Is this really my new "normal"?

Postby debbluebird » Thu May 02, 2019 3:40 pm

I went to the ER. I was sent by my PA. It did not help. All I wanted was sleep. They were very kind, but could not offer any help. They sent me to a psych hosp for two days, three nights. It did not help. The drug they offered made my legs worse. I got very little sleep. It was hell.
Everything Holland and Beth said, I agree.
Sorry you are going through this.


Return to “Augmentation”

Who is online

Users browsing this forum: No registered users and 1 guest