Tolerance issues in general

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: 349
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Tolerance issues in general

Postby QyX » Sun Sep 09, 2018 10:51 am

Be advised: this is only the personal perspective and opinion of a RLS patient like yourself. He is not (yet) a medical professional.

So here I want to offer some of my general observations I made in regards to treatment of RLS with medication. What I have to say is by no way complete description of the problem. However I think I now I have enough information and experience to make a more general statement that goes beyond my own personal situation.

I wish I could put it all in better English but unfortunately learning a new language was never my strong suit but I am trying my best here. Sometimes I just "forget" words. I think them but forget to write them down. Sorry for that.

So in my opinion, everyone who takes daily medication for RLS will sooner or later face the problem of either augmentation or tolerance.

I have no data for the U.S. but in Germany most patients with RLS, no matter how severe, get started on Levodopa (L-Dopa) together with a decarboxylase inhibitor to test if the patient is even responsive to dopaminergic treatment. At least here in Germany they use L-Dopa as some kind of test if somebody really has RLS. However the L-Dopa test is not 100% reliable.

Because the effects of L-Dopa are often not strong enough in moderate to severe cases and long term treatment with L-Dopa can cause severe side effects including fast augmentation most patients get a prescription for the classic RLS dopamine-agonists like Pramipexol (Mirapex in the U.S.) or Ropinirol. Rotigotine (the Neurpro patch) is also available but it seems that drug is only used when treatment with at least one oral dopamine agonists has failed. (*Pls note that L-Dopa is basically dopamine itself and is not classified as a dopamine agonists itself).

And here the big problems start. I would argue the data is insufficient however most of us with moderate to severe RLS will sooner or later augment on dopamine agonists. For some it is only a matter of days or weeks. Others seem to be able to tolerate them for a couple of years in low doses but only because they take regular breaks from the dopamine agonists. The 2nd issue is that once you have augmented on one dopamine agonists you will most likely augment on the other dopamine agonists too. And unfortunately much faster then on the 1st DA you tried.

For some going back to L-Dopa is an option but normally it is only a matter of time until they augment on L-Dopa, too. Patients who run into this problem seem to either increase their dose to deal with the enhanced symptoms and get stuck on high doses which will later result in a nasty withdraw or will just start and restart the DAs over and over again with poor sleep and poor quality of live.

So this is my first observation: the drugs who are described and advocated as 1st line treatment options in moderate to severe cases of RLS will, in many cases, only make the situation worse. And it is just a matter of time when this is happening. I don't know all the data and I am sure there are patients who happily life with DAs and L-Dopa for many years. However I don't know them and they don't seem to write in this particular forum. Please correct me if I am wrong.

Prescribing L-Dopa and DAs only seems to delay the inevitable, the use of alternatives. From reading treatment guidelines and the most common alternatives are

(1) opiods
(2) antiepileptics
(3) Benzodiazepines and other GABAnergic drugs
(4) i.V. iron infusion
(5) THC and other cannabinoids

And when you ask me, this is the point where the nightmare often really begins to start.

t Opioids are a highly effective treatment option for RLS, especially for the physical symptoms. The offer quick relief however there are unfortunately some problems associated with opioid treatment. The 1st would be that many doctors don't seem to know or belief that opioids can be an effective treatment for RLS but even when the patient can obtain a prescription for opioids, opioids often can cause hyper alertness and have stimulating effects together with their sedating properties. So the patient is free from his primary RLS symptoms but still can't sleep because the opioid itself is keeping him awake.

The 2nd big problem with opioids is, especially when you have the severe form of RLS which requires daily use of opioids or even round the clock treatment that you will run into tolerance problems. Especially in the U.S. the doctors now have strict limits when it comes to prescribing opioids and don't allow you to increase your dosage even though you would need a higher dose to manage your symptoms. There is no general consensus with dose is the appropriate limit for RLS but a equivalent of about 100 mg Morphine seems to be the maximum many doctors are willing to go now.

These two problems often lead to the addition of other drugs which all seem to have their separate tolerance issues (iron treatment excluded). Even when a medication works well for several years, unfortunately you are not safe. RLS is a dynamic disorder. Symptoms change and develop, simply because your brain changes, develops and ages. The intake of drugs who work in the central nervous system adds to that.

The antiepileptics Gabapentin and Pregabalin are often used to treat RLS. But to me it seems if effective, side effects associated with the treatment of antiepileptics either result in stopping the treatment or if the patients finds the side effect acceptable, the dosage needs to be increased over and over again. Up to a point where either side effects are forcing the patient or doctor to discontinue the the treatment or up to a point, where the patients rather accepts nasty side effects then no sleep during the night.

Antiepileptics are well known for their side effects and all the hopes doctors and patients put into them did not match the reality check. They work, sometimes, somehow but almost always not as expected and hoped for. And when there is a good response with a low rate of side effect, then unfortunately tolerance becomes much faster an issue then it normally would be.

So to deal with all the side effects from drug experiments and the withdraws and additional insomnia resulting from it, many doctors prescribe Benzodiazepines (Clonazepam, Diazepam, Lorazepam, Alprazolam, ...) and related drugs (Zopiclone, Zolpidem). Long term use unfortunately causes tolerance, dependence and will at some point result in a nasty withdraw when the drug is not stopped early enough.

To make my point, no matter which route you go, at some point a drug often simply stops working. RLS is a highly dynamic and extremely complex disorder in the nervous system. No matter what drug you feed that beast, it seems to adapt sooner or later when you have one of the more severe forms of RLS.

However doctors seem to except that once they found the right drug, it will just work for the time being, often not really realising how dynamic this disorder can be.

While mild forms of RLS are common, the more severe forms don't seem to be that prevalent. Also the drugs used for RLS are old and have been approved for other disorders like parkinson, epilepsy, chronic pain etc. ages and centuries ago. So there is no real interest from the industry how these drugs perform for RLS. The newer DAs and the combination of Oxycodone / Naloxone are rare exceptions because those drugs were still patented at the time they were approved for RLS. But nobody will invest drugs like Carbamazepine for RLS even though it can be highly effective with treating a broad spectrum of RLS symptoms, including hyper alertness caused by opioids and help to keep to opioid dose low simply because there is no money in it. Sadly one can become tolerant to the effects of Carbamazepine too as I had to experience.

If you want to treat your RLS in the proper way, then you need to figure out how all the substances who possibly work for RLS affect you and then find the combination that offers you the best quality of life. But make a plan what you will do when you run into tolerance issues. Speak about this problem with your doctor in advance. For example when antiepileptics are a great help for you, then you can add high-potent long acting Benzodiazepines like Clonazepam, stop the antiepileptics in a short period of time, take Clonazepam for 3-4 months, use Diazepam to have soft and slow withdraw from Clonazepam and then restart your old antiepileptic.

You can do similar stuff with opioids. (Using Benzodiazepines from time to time to do a partial withdraw from opioids). And even rotating opioids, like 1 year Oxycodone, 1 year Hydromorphone, 1 year Morphine can greatly help with keeping the dose low.

I use even weirder tricks to deal with tolerance issues and I thought about writing a complete treatment scheme for RLS when you run into tolerance issues but I am not sure if I am really qualified to do so and if this is the proper ethical way to publish the information I have. If you are interested in my personal history with RLS, I have a long (way too) long pharma diary in this forum.

And please consider iron treatment if you haven't done so already. There is good evidence that it really can help and keep in mind that all this is only my personal opinion.

stjohnh
Posts: 566
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Tolerance issues in general

Postby stjohnh » Sun Sep 09, 2018 1:16 pm

QyX wrote:Be advised: this is only the personal perspective and opinion of a RLS patient like yourself. He is not (yet) a medical professional.
.
.
.

And please consider iron treatment if you haven't done so already. There is good evidence that it really can help and keep in mind that all this is only my personal opinion.


QyX, I would not consider you to be an RLS patient like the majority of those that post on this board. As I recall from your previous posts your RLS is extremely severe, possibly among the most severe of any that post on this board.
Additionally you are a medical student, soon to graduate, with an intense interest and lots of knowledge about RLS.
I appreciate your multiple contributions to the knowledge base of this board over a many year period. I don't believe anyone has had as much experience with a variety of anti-epileptics and opioids as you have.

I echo the importance of considering iron treatment. The international restless leg study group consensus report that came out recently has elevated intravenous iron treatment to a first-line therapy. https://www.sleep-journal.com/article/S1389-9457(17)31559-9/pdf see section 5.3.4.

There is good evidence that the underlying problem of restless leg syndrome is inadequate transport of iron from the blood into the brain. As such, all treatments except for iron treatment are simply symptomatic and don't address the underlying problem.

My opinion about augmentation and tolerance issues is that with the exception of intravenous iron, all currently accepted treatments simply stimulate various receptors in the brain, some that are already over stimulated (most RLS patients already have higher than normal brain dopamine levels, dopamine agonists simply smack those receptors even more). Augmentation and tolerance seem to occur when those receptors reach their limits of stimulation. Once the receptors are saturated and cannot be stimulated more, small dose increases in medication cause dramatic effects, sometimes unexpected and severe.


My current theory is that it is possible that small doses of multiple medications, each just slightly stimulating a different receptor in the brain, can cause good relief of RLS symptoms, possibly without causing tolerance and augmentation because the low doses are never enough to saturate a given receptor.
Last edited by stjohnh on Sun Sep 09, 2018 1:35 pm, edited 3 times in total.
Blessings,
Holland

Rustsmith
Moderator
Posts: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Tolerance issues in general

Postby Rustsmith » Sun Sep 09, 2018 3:46 pm

Thanks for this discussion. This is especially timely for me since I am starting some sort of medication change (after 2.5 yrs) due to mental health issues brought on by the methadone that I have been taking. I'm not sure where this will take me, but apparently it is once again time for a change.

I would also like to add that the RLS experts in the US appear to be moving away from the use of dopamine agonists as a first line treatment and toward the use of the aantiepileptics. But even if they formally adopt that position, it will be years before that instruction get disseminated and adopted by the rest of the medical community.
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.

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Tolerance issues in general

Postby ViewsAskew » Sun Sep 09, 2018 9:44 pm

Rustsmith wrote:Thanks for this discussion. This is especially timely for me since I am starting some sort of medication change (after 2.5 yrs) due to mental health issues brought on by the methadone that I have been taking. I'm not sure where this will take me, but apparently it is once again time for a change.

I would also like to add that the RLS experts in the US appear to be moving away from the use of dopamine agonists as a first line treatment and toward the use of the aantiepileptics. But even if they formally adopt that position, it will be years before that instruction get disseminated and adopted by the rest of the medical community.


Given that we still see some doctors prescribing carbidopa/levadopa, it will be a very long time, I imagine.

And, as Holland noted, except infusions, none of these treatments deals with the actual cause...because we don't know it. We can only hope that we learn a LOT more and soon, so that a true solution (or group of solutions) can be identified and created and implemented. Until then, many of the more severe and truly severe cases will continue to have these problems.
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.

QyX
Posts: 349
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Tolerance issues in general

Postby QyX » Wed Sep 19, 2018 12:24 pm

stjohnh wrote:
QyX, I would not consider you to be an RLS patient like the majority of those that post on this board. As I recall from your previous posts your RLS is extremely severe, possibly among the most severe of any that post on this board.


Reading this just makes me so sad. 1st because it seems to be true and and 2nd: I went looking for patients in Germany but most of them only seem to have mild or secondary RLS which can be treated relatively easily compared to the primary genetic form who can appear early in life. There are some quite severe cases here on the board. I am lucky that I get enough opioids. This makes it easy to deal with the pain but they don't help at all with the secondary issues, especially the hyperalertness between 22:00 and 07:00. If I manage to fall asleep before 22:00 ... which is not that hard, I mostly wake up around 23:00 because of minor and mild RLS symptoms and then after they are gone again, I simply can't fall asleep again, no matter what I do and have to stay awake until early morning when I suddenly to start super tired.


Additionally you are a medical student, soon to graduate, with an intense interest and lots of knowledge about RLS.


I won't graduate anytime soon. I missed too much and and why behind with my exams. Luckily the system in German lets me take as much time as I need but when I can't manage to fall asleep during night, then I never will be able to life a normal work or do any kind of normal work. This is especially troublesome for me.

I appreciate your multiple contributions to the knowledge base of this board over a many year period. I don't believe anyone has had as much experience with a variety of anti-epileptics and opioids as you have.


Thank you


My current theory is that it is possible that small doses of multiple medications, each just slightly stimulating a different receptor in the brain, can cause good relief of RLS symptoms, possibly without causing tolerance and augmentation because the low doses are never enough to saturate a given receptor.


It would depend on the drug and the receptor. For GABAnergic drugs, even small loses like 1 mg Diazepam will lead to severe to physical deppennce if only taken long enough. And for other drugs, you will need to take a specific amount to even have an effect.

But it might work for drugs who are highly effective even in small doses but there also is a fast tolerance involved ... like Lyrica. But overall, I don't see this as a resolution and it will only stall the time until you have to deal with tolerance or loss of effects.

But using this tactic might help to get the effect back quickler. But in the end it will all the depend on the specific, drug, dosage and your genes.

For example I recently tried 100 mg Lyrica after 50 mg had an effect but not strong enough. When trying 100 mg, it felt absolutely perfect, like it should and I slept fine for many hours. But then the next day, the effect was already reversed, Lyrica was only making everything worse, stimulating me and causing additional RLS symptoms which made me take a high extra dose of opioids.

QyX
Posts: 349
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Tolerance issues in general

Postby QyX » Wed Sep 19, 2018 12:56 pm

Rustsmith wrote:I would also like to add that the RLS experts in the US appear to be moving away from the use of dopamine agonists as a first line treatment and toward the use of the aantiepileptics. But even if they formally adopt that position, it will be years before that instruction get disseminated and adopted by the rest of the medical community.


That will never happen ... or at least not any time soon, like in the next 20 years, simply because treatment guidelines are evidence based and when you compare the evidence all antiepileptics vs. a single DA ... the dopamine-agonists will win.

There is no money in selling old but effective antiepileptics like Carbamazepine, Oxcarbazepine, Valproat, ... when you have all these new shiny (relative to the classic antiepileptics) dopamine agonists who are way more expensive.

You would need to make new studies who in quality at least match all the current studies for dopamine-agonists and the opioid combination drug Oxycodon / Naloxon (Tegretal) but nobody will make those because those studies would cost millions and millions.

Also I am starting to believe that you can "augment" on antiepileptics. At least Lyrica and Gabapentin were always only worsening my symptoms. At the beginning they worked for a few days but then everything turned around.

And for Carbamazepine, this drug was my special hope. I was so sure I'd found something with this drug. But again, I was so wrong ... again. Carbamazepine also has effects like an SRRi antidepressent. They are not as strong as an classic SSRi but when you take crazy high doses like I did and Carbamazepine is loosing its sedative, calming properties more and more, at one point the SSRi effects were dominating the Carbamazepine and therefore Carbamazepine was only worsening my symptoms.

Reducing the dosage by 2/3 helped keeping the analgesic properties and the SSRi effect was weak enough to do not any harm. However I could since months and months, even years that I was about to loose the hypnotic-calming effects of Carbamazepine.

And I guess that will just happen with every other drug I try that has those kind of effects. Sometimes it will go fast and quick and sometimes it will take years like in the case of Carbambazepine. But it just seems that it will always happen.

So the only solution I see is to make my brain sleep on its own. I have small hopes for Ferritin treatment but I have no time frame when I could get such treatment since my own doctor is not doing it. Unitil then I hope I can gain some time with Oxcarbazepine and experiment with Nicotine.

I think Nictoine can be both, good and bad for RLS ... and be as dangerous as dopamine-agonists.

If opioids alone would help me, I would take them. When I only had to take like 500 mg of Morphine equivalent daily and all things would be good, my doctor would approve that for sure ... then in then ends, who cares if take 200, 300, 400 or 500 when the problems are then finally resolved. But it is not that easy. Opiods alone only helpmed me in the first months of taking them ... and they were so stimulating, especially Oxycodone, that I had to take additional Benzodiazepines to sleep.

Morphine had some truly hynotic properties but I got tolerant to them after only 2-3 months.

New diagnosed patients with daily RLS from the primary form, I would treat them with Codeine since it gets transformed into Morphine and often has true hypnotic properties. This would gain some time to find a working antiepileptic and lots of options to go on potent opioids later, should a combination of a low potent opioid and antiepileptic with analgesic properties not be enough.

These dopamine- agonists, I would reserve them as an emergency medication since it almost seems like everybody will augment on those drugs ... and it is only a matter of time.

Everything else, even weak melatonie agonists can instantly worsen RLS ... and this in small doses already.

I understand not every case is as complicated as mine but sooner or later most of the patients will run into some of the problems I have already. And they may not realise because the symptoms are not as pronounced and severe as in my case.

So far classic opioids (Morphine, Oxycodone, Codeine etc.) and Benzodiazepines have been the only class drugs who have no potential to worsen my RLS.

Years ago I had high hopes in antiepileptics but when I look at my experience and all the side effects people report here on the forum, they are probably just as problematic as dopamine-agonists. Only in a different way.

If you have the option to get potent opioids in high enough doses and they are effective, and this is by far the best treatment option currently available. However in most cases it is not enough or doctors are reluctant to prescribe the doses necessary and required by the patient because of fear of prosecution because of those opioid addiction drama in the U.S.

When you suffer from like depression or even a bipolar disorder, you always have options, options, options and 20-30 and more drugs in all kind of combinations can be considered. But with RLS, the diagnoses alone excludes so many drugs who could be helpful.

I don't know how to deal with all these problems. When I run into one, I just keep trying to find a solution and I never give up. It makes me loose not only months but years of med school and a possible promising professional career, but only finding sleeping during the day complete isolates me from social life and makes establishing any kind of friendship or romantic relation completely impossible. That's the real drama of RLS for me.

I absolutely hate having this disorder. If I would give up 10 years of my life but then life a normal life, study and work as many people of my intellect in the western world, I gladly would do it. This is no life. This is just waiting. Waiting for the next problem to occur. And since there almost always is some kind of not manageable problem, it is all about experimenting and waiting and hoping that the "problem" might disappear.

stjohnh
Posts: 566
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Tolerance issues in general

Postby stjohnh » Wed Sep 19, 2018 1:42 pm

QyX wrote:And for Carbamazepine, this drug was my special hope. I was so sure I'd found something with this drug. But again, I was so wrong ... again. Carbamazepine also has effects like an SRRi antidepressent. They are not as strong as an classic SSRi but when you take crazy high doses like I did and Carbamazepine is loosing its sedative, calming properties more and more, at one point the SSRi effects were dominating the Carbamazepine and therefore Carbamazepine was only worsening my symptoms.


Carbamazepine has a fatal flaw that will keep it from being used in the US much, a black box warning. This is a kiss of death for most meds. It is a bold black box with bold black letters in the official FDA prescribing information informing doctors of a substantial risk of a deadly side effect. In this case, agranulocytosis.

QyX wrote:There is no money in selling old but effective antiepileptics like Carbamazepine, Oxcarbazepine, Valproat, ... when you have all these new shiny (relative to the classic antiepileptics) dopamine agonists who are way more expensive.


This is true in the US only for Neupro patches. Ropinerole and pramipexole are generic here and fairly cheap to buy.

QyX wrote:So the only solution I see is to make my brain sleep on its own. I have small hopes for Ferritin treatment but I have no time frame when I could get such treatment since my own doctor is not doing it. Unitil then I hope I can gain some time with Oxcarbazepine and experiment with Nicotine.

I think you mean IV iron treatment. It sounds as though you haven't tried it. If you haven't, you should. The International Restless Legs Study Group consensus paper puts IV iron as first line therapy. If I had RLS as bad as yours I would move heaven and earth to give it a try, even if it meant going to another doctor or another country to get it.

QyX wrote: If opioids alone would help me, I would take them. ...

That is one thing I have wondered about your approach to treatment of RLS, I don't see much mention of using small doses of multiple drugs known to be effective for RLS. It has worked for me and at least a few others with severe RLS.

QyX wrote:I don't know how to deal with all these problems. When I run into one, I just keep trying to find a solution and I never give up. It makes me loose not only months but years of med school and a possible promising professional career, but only finding sleeping during the day complete isolates me from social life and makes establishing any kind of friendship or romantic relation completely impossible. That's the real drama of RLS for me.

I absolutely hate having this disorder. If I would give up 10 years of my life but then life a normal life, study and work as many people of my intellect in the western world, I gladly would do it. This is no life. This is just waiting. Waiting for the next problem to occur. And since there almost always is some kind of not manageable problem, it is all about experimenting and waiting and hoping that the "problem" might disappear.


QyX, I am truly sorry you have suffered so much with this disease, I haven't had anywhere near the severity of problems you have, and at an early age as well. I have felt similar feelings to yours. Social isolation is a problem for many of us with severe RLS. Even though mine is fairly well controlled on the meds I use, I still am nearly useless after about 6pm. I get grouchy, can't think, and since I have to take the bulk of my meds at 7:30 pm and they make me goofy, can't drive or participte in most evening activities, such as going out with my wife to the many things she does in the evening. I have severe RLS, but nowhere near as severe as yours. There should be a special category for you "EXTREME."
Blessings,
Holland

Rustsmith
Moderator
Posts: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Tolerance issues in general

Postby Rustsmith » Wed Sep 19, 2018 2:36 pm

There should be a special category for you "EXTREME."


In the paper by Dr William Ondo describing a patient that received DBS surgery because none of the treatments that they tried was working, he used the term "malignant" RLS. I gathered that her IRLSSG score was 40 before the surgery.
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.

Polar Bear
Moderator
Posts: 7222
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Tolerance issues in general

Postby Polar Bear » Wed Sep 19, 2018 2:52 pm

Qyx - My heart does go out to you in your battle with RLS and your constant struggle to keep on with your medical studies.
'EXTREME' symptoms indeed, as per Holland.
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

badnights
Moderator
Posts: 4916
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Tolerance issues in general

Postby badnights » Fri Sep 28, 2018 1:27 pm

QyX, there have been so many times you've told us when you could not envision ever getting any better and had tried seemingly everything there was to try. I am so impressed with the power of your determination to live, which is strong enough to carry you through all those times and find solutions (albeit temporary) that you hadn't dreamed existed.

It's the "temporary" part that you're turning your determination to now.

Your focus so far has been on medications. But how can we expect to fix such a complex disorder with medications, especially when we have no idea what causes the problem? We're just shooting at echos in the dark. We need to understand the problem in much better detail.

And meantime, we might benefit from regarding all bodily systems as relevant to the disease. Our current therapeutic approach is to target only this or that neurotransmitter, but one of the most effective treatments (for some people) is iron therapy, which comes closer to addressing the real problem. Now we need to figure out *why* there's a problem with bbb iron transport. And we need to figure out what the other problems are (because iron is not the only one), and if there are straightforward ways to address those problems.

I don't really know what I'm saying, I'm just trying to convey something I sense.

It makes me loose not only months but years of med school and a possible promising professional career, but only finding sleeping during the day complete isolates me from social life and makes establishing any kind of friendship or romantic relation completely impossible. That's the real drama of RLS for me.
I've been on a stable or decreasing dose of hydromorphone for years now, and although it deals well with the classic WED/RLS symptoms, it has wreaked havoc with my circadian schedule and my sex life. I do not like being on opioids. Yet - - I have a semi-life, and I have been willing to give up such things in order to gain that, at least.
I hope for you that your circadian schedule flips like mine did - I was going to bed at 6 AM when I needed to be on a job getting up at 6 - - I took extra meds for 5 days and suddenly my body flipped and I still - 1.5 yr later - have managed to retain this "normal" schedule. Hope you get that too.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

curqlink
Posts: 61
Joined: Sat Jul 21, 2018 6:38 am

Re: Tolerance issues in general

Postby curqlink » Fri Sep 28, 2018 5:02 pm

I keep telling myself there's no such thing as curses. But everytime i think i figured this thing out.. only to discover a few weeks later that i really don't have anything figured out. My mind keeps going back to thinking about curses and such.

Seriously tho.I think this is more serious of an issue than many in the medical profession realize. And until the day comes that we can actually address the root cause... It's like our nervous system is not going to let us simply sweep it under the rug by just treating the symptoms. It seems no matter what we do... the symptoms are going to return and rear their ugly head to remind us that we really havn't fixed anything. We just are trying to cover it up.

jul2873
Posts: 372
Joined: Thu Nov 15, 2012 7:32 pm

Re: Tolerance issues in general

Postby jul2873 » Sat Sep 29, 2018 2:23 am

Qyx, so so sorry for what you're going through! I have also had RLS for many, many years (about 50 I would guess) but it only became severe about six or seven years ago. At that time there was beginning to be much information on this board about the dangers of a DA drug, so I wouldn't take one. "You reading that internet?" my doctor sneered at me.

I did a lot of research and decided to try kratom. I notice you haven't mentioned using it, but I'm pretty sure it's legal in Germany. I mention it because, besides being very effective for RLS, many people use it to treat anxiety disorders as well, and some of the strains, such as the Red Borneo one, can make you sleepy if you don't take too much. So it might be worth a try. It's been a godsend to me for the last six years.

Just my two cents. And I really appreciated your summary of the problems with the various Rx's.

erika13
Posts: 30
Joined: Sat Apr 06, 2013 4:54 pm
Location: Tokyo, Japan

Re: Tolerance issues in general

Postby erika13 » Sat Sep 29, 2018 8:43 am

Thank you so much for your excellent summary of all the key issues with the classes of pharmaceuticals QyX. I'm incredibly sorry too to hear what you've been through and are still going through Like jul2873 I have been taking the Red Vein Borneo strain of Kratom quite successfully for the last five years, but I am noticing some tolerance issues and I suspect some augmentation too. I need more and I’m getting the symptoms earlier on in the day as well.

I know it’s not a pharmaceutical, but some of the latest research out of John Hopkins published earlier year has identified that excitability and hyperarousal in the Motor Cortex of the brain is a potential cause.

And transcranial magnetic therapy (rTMS) seems to be quite successful in helping to calm the hyperexcitability.

There have been a number of published studies over the past few years on rTMS on the success for RSL and I’m exploring it as a treatment option here in Japan.

If I have any success I’ll report back!


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest