1st post after 24 years of RLS

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Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

1st post after 24 years of RLS

Post by Icantsleep »

44 year old male (married) father of two very young girls living in a major Eastern Canadian city.
Had significant RLS since age 20
Not hereditary (idiopathic)
Past 2-3 years saw a significant worsening of symptoms
Mirapex was introduced June 2006 and was very effective in reducing or eliminating symptoms, but dose had been upped from .125mg as needed to .375mg (spaced out in 2 or 3 doses)
Tried Gabapentin 2.5 years ago with heavy undesired side effects, then chose to supplement mirapex with medical marijuana, which was very helpful for a while , as opposed to upping mirapex further
RLS symptoms returned to peak levels and mirapex was upped to 2x .25mg approximately 7 weeks ago, which for the first time truly and obviously was causing augmentation.
I am now mirapex free after a 10 day taper, and tramadol 2x 50mg was introduced 6 weeks ago
I have not had any mirapex in 4 weeks
I continue to vaporize marijuana
I also have been on clonazepam for the last 26 years, initially for severe anxiety, but now for sleep .75mg at bedtime

I was unaware how problematic augmentation would be
I am generally terrified when thinking about what few options I have to combat my severe RLS
I am currently unable to care for my children (this was already a slight challenge )
Basically, I need all the help and support I can get , and will gladly aid and support others if and where possible .

More to come

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

Re: 1st post after 24 years of RLS

Post by stjohnh »

Icantsleep wrote:44 year old male (married) father of two very young girls living in a major Eastern Canadian city.
...
I am now mirapex free after a 10 day taper, and tramadol 2x 50mg was introduced 6 weeks ago
I have not had any mirapex in 4 weeks
I continue to vaporize marijuana
I also have been on clonazepam for the last 26 years, initially for severe anxiety, but now for sleep .75mg at bedtime
...
I am generally terrified when thinking about what few options I have to combat my severe RLS
I am currently unable to care for my children (this was already a slight challenge )
Basically, I need all the help and support I can get , and will gladly aid and support others if and where possible .

More to come
Welcome to the RLS community Icantsleep. If you have been browsing you will have figured out that you have come to the right place. Lots of helpful, knowledgable, compassionate folks here with experience of all versions and severity of RLS.

Firstly, What meds and doses are you currently taking and what kind of symptoms are you having on your current meds?

Do you live only with your two daughters? How old? Are you their only parent? Are you able to work?

Next: There are still options for use with severe RLS (which it sounds like you have). Major obvious ones are IV Iron Infusions and stronger opioids (Tramadol is a weak opioid). Unfortunately, getting either of those is a problem for many of us, and it seems to be harder even for Canadians than for us in USA. However, persistence pays off those that need it, seem to get IV iron or opioids eventually.

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 Syndrome 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 done for many years). 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 test doctors usually do (ferritin test) to check for low iron only checks 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
Blessings,
Holland

Frunobulax
Posts: 430
Joined: Mon Jun 02, 2014 7:41 pm

Re: 1st post after 24 years of RLS

Post by Frunobulax »

Icantsleep wrote: I am generally terrified when thinking about what few options I have to combat my severe RLS
I am currently unable to care for my children (this was already a slight challenge )
Basically, I need all the help and support I can get , and will gladly aid and support others if and where possible .
Welcome!

In addition to what Holland wrote, there are a lot of sufferers who found something that really helps them. Often it's taking supplements like vitamin B12, often it's dietary like going on a ketogenic diet or simply avoiding all refined sugar and artificial sweeteners, often it's a combination of both.

Doctors learn in med school how to treat symptoms, but not how to find the cause for a chronic illness. But that's what you got to do.

I'm very much focused on nutrition because it helped me a lot, so I'd recommend checking for leaky gut (zonulin) and insulin resistence (HbA1C and HOMA index), and a low-carb high-fat diet with loads of salad, vegetables and healthy fats (olive oil and coconut oil are great, avoid other vegetable oils) along with avoiding processed foods and antibiotics in meat can do wonders if you stick to it for a few months. In general stick to anti-inflammatory food. Any kind of fasts (I find intermittent fasting the easiest to maintain) can help too, although there may be elevated symptoms in the short term as your body adapts to that.

There are a lot of reasons why you could have BID, and chronic inflammation and damaged gut microbiom are among them. Toxins are other possible reasons that may or may not be involved, mercury, lead, mould, some bacteria producing toxins.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

I take 20mg pantroprazole 30 minutes before small “breakfast” usually very early AM.
.75 mg clonazepam and a few draws from a medically approved vaporizer of highly potent indica to get back to sleep ( because breakfast usually happens 2 hours after going to bed)
Then I sleep for 30 minutes before rls wakes me up (I now feel this morning variety of rls in hips and trunk)
Then I get up and do what people with rls do etc ....
Then I vape and sleep for 30 minutes
Rinse and repeat
... I do this until it’s time to give up and get up
(This ridiculous fragmented sleep is new since recently withdrawing from mirapex

I then go the rest of the day with my 3 and 1 year old daughters being the focus
I live common law with their mother
We are engaged but it’s difficult to plan a wedding with my sleep issues
.... I also haven’t been able to work or go to school in 20 years

I have 3x 1000 vitamin D pills with “lunch”

It’s important to note (and I’ve been trying to fix this for years ) that I have a fairly pronounced non 24 hour circadian rhythm disorder
Try as I may, but for the las 20 years I cannot maintain a consistent sleep pattern .
(I know this is detrimental to my sleep and life in general)

At kids bedtime/hour or two after dinner , I take 50mg tramadol and maybe 4 big draws from vaporizer of high THC sativa to combat first onset of evening RLS and to be able to lay in bed with daughter(s)
Sometimes this takes 5 minutes , sometimes much longer to be effective
... when this does work, it can give me 4 solid hours of relief from RLS

I then get completely ready for bed
Eat small bowl of high fibre cereal
Take 50 mg tramadol and vape again regardless if RLS has returned
Then I sleep for 90-120 minutes , and then start all over again ....

My worst and most problematic RLS symptoms begin at this point
It’s important to note that tramdol is hit and miss with side effects (numbing of body, slowing of breathing and heart rate , digestion problems etc ...
I don’t like side effects .....

I have higher than normal blood iron levels
This has been consistent for quite a while
I’ve done a fasting blood test last week specifically for iron levels
Unsure what brain iron levels this will yield ...
I have yet to be triaged by new neurologist , but have been referred .
...old sleep specialist of 13 years has shown limited interest in helping me the entire time I’ve been his patient

I am open and interested in making dietary changes

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

Re: 1st post after 24 years of RLS

Post by stjohnh »

What dose of gabapentin did you take previously? Do you still have some?

The reason I ask is that for many of us, small doses of multiple RLS meds result in better relief and fewer side effects than using one med at a higher dose.

Many of us that have augmented in the past have found it is possible, after being off the Mirapex/pramipexole for several weeks, to restart at a TINY dose, like 1/2 of a 0.125mg tablet, taken in the evening. Keeping the dose very low (like never above 0.125mg), in addition to continuing other RLS meds, (IE your clonazepam, tramadol and THC) seems to keep augmentation from developing and yet still provides significant symptomatic relief.
Last edited by stjohnh on Mon Sep 23, 2019 10:15 pm, edited 1 time in total.
Blessings,
Holland

Bridgercan
Posts: 67
Joined: Sat Jun 23, 2018 6:43 pm
Location: Spain

Re: 1st post after 24 years of RLS

Post by Bridgercan »

Icantsleep wrote: I was unaware how problematic augmentation would be
I am generally terrified when thinking about what few options I have to combat my severe RLS
I am currently unable to care for my children (this was already a slight challenge )
Basically, I need all the help and support I can get , and will gladly aid and support others if and where possible .

More to come
Welcome to the forum, Icantsleep! Your fear makes complete sense to me—you’re not alone in that or coping with the all the challenges having RLS can throw at us. I too have severe RLS and have gone through Mirapex-induced augmentation as well—a ghastly experience. And I as well have to fight off fear of what my options will be in the near, medium, and long term.

I’ve found much inspiration, encouragement, & hope here; there are some especially kind and supportive members in whom I’ve every confidence will help support you in dealing with this baffling and bamboozling syndrome. You’ve found a place to share, to support and be supported, and to find community.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

stjohnh wrote:What dose of gabapentin did you take previously? Do you still have some?

The reason I ask is that for many of us, small doses of multiple RLS meds result in better relief and fewer side effects than using one med at a higher dose.

Many of us that have augmented in the past have found it is possible, after being off the Mirapex/pramipexole for several weeks, to restart at a TINY dose, like 1/2 of a 0.125mg tablet, taken in the evening. Keeping the dose very low (like never above 0.125mg), in addition to continuing other RLS meds, (IE your clonazepam, tramadol and THC) seems to keep augmentation from developing and yet still provides significant symptomatic relief.
I took 100mg gabapentin with my regular mirapex dose and no change to rls and no side effects
I took 200mg with mirapex next night and had limited effect on rls , but I experienced significant side effects the next day including nearly crashing my car and just simply not being myself
That's when I chose the medical marijuana

I am open to having a combination or rotation or holiday and/or reintroducing a near micro dose of mirapex
I would love to be followed by a doctor while doing this !(or even with the tramadol I'm currently taking)
... I just tapered and eliminated mirapex without any real medical guidance .

I do have mirapex on hand
I believe I disposed the gabapentin

An aside :
I do believe taking tramadol at 8pm and again at midnight does not help for 6am next morning RLS as the tramadol has a short half life
... I'm unsure however, why I get severe rls 2 hours after taking my midnight dose of tramadol and THC

I split the 50mg midnight dose into 2x 25mg and seemed to have less fragmented sleep last night

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

Re: 1st post after 24 years of RLS

Post by stjohnh »

If it were me, I'd try: changing the tramadol to tramadol ER if possible, and take 1/2 of a 0.125mg Mirapex tablet with the clonazepam, and take 50mg gabapentin with your evening clonazepam and another 50mg about midnight.

Another option that may or may not help, add kratom to your other meds. Is it legal where you live?
Blessings,
Holland

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

stjohnh wrote:If it were me, I'd try: changing the tramadol to tramadol ER if possible, and take 1/2 of a 0.125mg Mirapex tablet with the clonazepam, and take 50mg gabapentin with your evening clonazepam and another 50mg about midnight.

Another option that may or may not help, add kratom to your other meds. Is it legal where you live?
Tramadol ER was and is available .
I didnt like the idea of feeling like I was on tramadol constantly considering I'm essentially trying to take all these meds only to sleep
I may need to entertain the ER idea ...
What time would I take it ?

I certainly have mirapex .25mg
Unsure if I'd get a proper measured dose breaking them into quarters (?)

To attempt to be clear , I only take clonazepam early AM to get back to sleep after RLS wakes me for the first time.
Not a bad time to take the mirapex perhaps as my worst symptoms now seem to occur then and thereafter
.... perhaps take it a bit earlier to try and avoid having RLS wake me up at all ?

Replace tramadol 8pm and 12am dose with 50 mg gabapentin each ?
Not sure if 100 mg capsules are the lowest dose though .

You did leave out the 8pm and 12am THC vape sessions .
Unsure if you'd suggest continuing
... perhaps on a as needed basis ?

I'm in Ontario, Canada
Unsure what the status is with Kratom
Could find out

I appreciate and value your suggestions

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Bridgercan wrote:
Icantsleep wrote: I was unaware how problematic augmentation would be
I am generally terrified when thinking about what few options I have to combat my severe RLS
I am currently unable to care for my children (this was already a slight challenge )
Basically, I need all the help and support I can get , and will gladly aid and support others if and where possible .

More to come
Welcome to the forum, Icantsleep! Your fear makes complete sense to me—you’re not alone in that or coping with the all the challenges having RLS can throw at us. I too have severe RLS and have gone through Mirapex-induced augmentation as well—a ghastly experience. And I as well have to fight off fear of what my options will be in the near, medium, and long term.

I’ve found much inspiration, encouragement, & hope here; there are some especially kind and supportive members in whom I’ve every confidence will help support you in dealing with this baffling and bamboozling syndrome. You’ve found a place to share, to support and be supported, and to find community.
I appreciate this immensely

Frunobulax
Posts: 430
Joined: Mon Jun 02, 2014 7:41 pm

Re: 1st post after 24 years of RLS

Post by Frunobulax »

Icantsleep wrote:I take 20mg pantroprazole 30 minutes before small “breakfast” usually very early AM.
Pantoprazole may be responsible for your RLS. Reducing stomach acid hinders iron absorption. (And does a lot of other bad things too, and we're not yet 100% that iron deficiency is the cause for RLS, it may just be a symptom of something else.) I wrote about this here: http://bb.rls.org/viewtopic.php?f=4&t=10519

Also blood iron status seems to be fairly unreliable. I always had high Ferritin but still developed RLS.

As for diet, this is too complex to discuss in a few sentences. There has been a recent change in what we consider healthy, and there is overwhelming scientific evidence that a low carb high fat diet is much healthier for us than the typical western diet https://www.dietdoctor.com/low-carb/science. ("Change" is perhaps not entirely correct. "Landslide" is more appropriate.) Basically, avoid carbs and sugar in general, all processed foods, antibiotics (in most meat), eat plenty of salad, vegetables, nuts, fish, olive oil, coconut oil. Avoid lectins, other vegetable oils and soy products. There is some discussion as to whether animal protein is healthy, some say aye ("carnivor diet"), many say nay. I'd recommend tolLimit protein as it will be converted to Glucose in your liver, but personally think that organic meat, grass fed if possible, should be part of the diet. Saturated/animal fats are under discussion too, they seem to be a lot healthier than most people think.

There are plenty of very good videos on youtube, if you have a bit of time. Some of my favorites (in no particular order):

Frunobulax
Posts: 430
Joined: Mon Jun 02, 2014 7:41 pm

Re: 1st post after 24 years of RLS

Post by Frunobulax »

Icantsleep wrote: [THC]
THC is a bit iffy. It seems to help in the short term, but it is not clear if it can cause damage in the long run. I've seen doctors talk about brain scans of long-time THC users and they show significant damage in comparison to normals, especially in the hippocampus which is responsible for memory. Also the rate of Alzheimer seems to increase. We all know that there is a lot of ideology involved in these claims, and I'm not an expert (not consuming it myself), so it may or may not be true. but it sounded plausible and well based in studies. In any case there is conflicting evidence https://www.drugabuse.gov/publications/ ... ects-brain.

As the mechanism on RLS is somewhat similar to opioids, I'd say there is no problem provided you ensure constant dosage. Patients can take stuff like Oxycodone ER for a long time without developing tolerance, provided they take it round the clock and maintain a constant dose. (This is not just RLS, but also pain management. My aunt was a md who worked in that area once.) However, short-acting opioids may lead to tolerance and perhaps worsen the RLS symptoms. Now smoking/vaping THC or nicotine causes massive spikes in the dosage and is very short acting... That's the reason why I don't consume either (anymore), even though it seemed to provide some short term relief.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Frunobulax wrote:
Icantsleep wrote:I take 20mg pantroprazole 30 minutes before small “breakfast” usually very early AM.
Pantoprazole may be responsible for your RLS. Reducing stomach acid hinders iron absorption. (And does a lot of other bad things too, and we're not yet 100% that iron deficiency is the cause for RLS, it may just be a symptom of something else.) I wrote about this here: http://bb.rls.org/viewtopic.php?f=4&t=10519
I had rls about 19 years before taking 80mg tecta for about 2 years for major dyspepsia caused by too much naproxen and just plain stress
I cut it to 40 mg in the hope my mirapex would be absorbed better
I then cut it further to 20mg pantroprazole for the same reason (and who needs to be on a med if you really dont need it anymore ?)
I then tried unsuccessfully 5 times to eliminate altogether
... severe heartburn kept me awake and everyone told me it didn't affect mirapex or my new tramadol Rx absorption

I'm open to stopping my 20mg dose for the sake of my iron
.... it sure does work for reducing stomach acid though !
Perhaps I'll alternate days and try to stop for the 6th time

I should mention that now 4+ weeks into mirapex withdrawal I'm seeing a newer reduction in the severity of the rls.
I thought I had hit baseline , but I'm going to continue leaving even the smallest dose of mirapex out of my system for a bit longer .

My goal is to take tramadol for the short term while staying off mirapex
I do aspire to try to taper and eliminate tramadol as well to get a further idea of where my rls is sans DA AND opiod
I plan on continuing clonazepam for a while

I have been reducing my THC consumption to avoid tolerance and unnecessary ingestion
It really does work in the short term , and more effective the longer you can go without it .
I have decided to try sticking to merely sativas regardless of intial uplifting high
There seems to be at least a minor correlation between fragmented sleep and indicas (and even CBD oil strangely enough)

I welcome the information on both proton pump inhibitors and THC

Frunobulax
Posts: 430
Joined: Mon Jun 02, 2014 7:41 pm

Re: 1st post after 24 years of RLS

Post by Frunobulax »

Icantsleep wrote: I then cut it further to 20mg pantroprazole for the same reason (and who needs to be on a med if you really dont need it anymore ?)
I then tried unsuccessfully 5 times to eliminate altogether
... severe heartburn kept me awake and everyone told me it didn't affect mirapex or my new tramadol Rx absorption
"Everyone" told me the same, until some doctor told me the truth after many years. It turns out that opioids, most antidepressants and PPIs are metabolized via the same enzyme, Cytochrome P450 2C19, so they do affect each other. But the effect on the microbiome is a lot worse than the effect on the drug metabolism.

Heartburn is often caused by the diet, but it's highly individual. Turns out I had to stop all whole grain products, all milk products (except a tiny bit of cream for the occasional coffee), raw tomatos, peanuts and bell peppers, and my hearburn went away. But it could be completely different for you. The general approach is switching to a diet that contains no lectins at all and little carbs, and re-introduce them individually after 2-3 months. I do tolerate some vegetables and oils that contain lectins, and I tolerate gluten and WGA (both lectins), but other lectins give me immediate heartburn. Half a bell pepper (containing lectins) or 3-4 ounces of yoghurt (containing Casein-A1) will do the trick, instant heartburn. Steven Gundry has loads of free information on this on his homepage https://drgundry.com/lectin-guide/.

But stopping PPIs isn't easy, please check that other thread that I referenced. I made about 5 unsuccessful attempts to stop them too :), but changing my diet allowed me to finally defeat the rebound.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: 1st post after 24 years of RLS

Post by debbluebird »

Do you think they could change your tramadol to codeine? Once you augment with mirapex it's hard to take it again. Some people are able to take it 2 or 3 nights then take an opioid the next three nights, etc. I found that mirapex caused my sleep to shorten. It took years to figure this out. I went from sleeping 8 or 9 hours to 6 hours. Then after augmentation and being off it for awhile, when returning to it I could only sleep 2 hours. I know for sure it caused my sleep to shorten.
Now I take gabapentin 600 mg every 8 hours and methadone every 8 hours. They are the only things that work for me. I've tried about 20 different meds.
Good luck

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