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

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Polar Bear wrote:Icantsleep - that is such an awful experience with your RLS doctor. He is not a kind man.
My guess is that he is stuck and doesn't know what to do but his ego doesn't allow him to admit this.

Your situation is so so difficult - As Holland has suggested, is it possible that you could make it to one of the RLS Quality Care Centres.
https://www.rls.org/treatment/quality-care-centers
I think there are waiting lists and I have no idea what the cost might be.
Do you have medical insurance?
You need to get to someone who knows what they are talking about.
I appreciate the link

I'm in Canada
I have money for quite a while ,but could not justify spending thousands of dollars and take multiple flights over multiple days (including returning) each time I need to see a specialist
Heck I dont think I could even physically do it .

Are there no specialist doctors on the planet that do online appointments ???

My medical marijuana doctors can be seen online within 2 days
I dont even have to leave my bedroom
So easy and so cost effective

(Speaking of marijuana, I would certainly not be able to bring it across the US border .... in fact , if a Canadian even admits to smoking marijuana EVER in their lifetime , that is now grounds for a lifetime ban from the United States !)

Lol
I also just remembered I'm on some sort of list
Not the no fly list , but when I used to go to Florida or NYC or Vegas, I'd get super harrassed .
I've even been told by flight attendants that they are supposed to "keep an eye on me"

Every time I'd come home to Canada I'd be sent to secondary for further inspection and questioning .

This is relevant because I could go though all the trouble of setting up a trip to see an American specialist only to be refused at the border .

.... what really gets me is there's a guy about 30 minutes from where I live , who's supposed to be doing his job, but here we are having THIS conversation

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

hi icantsleep

What a stressful life you have! to put it mildly.

this is kind of a choppy reply but I want to get it to you before my sleeping med kicks in

Re drug abuse, maybe it contributed to the circ. rhythm disorder in some small way, but I doubt it had a very significant effect. I know plenty of people who have taken all you did and more for far longer, and didn't end up with any sort of circadian rhythm disorder. So don't guilt yourself on that one.

Re the anxiety, god knows that's hard to deal with. Cannabis will make it worse - better momentarily but overall worse - so that's another reason to be glad you've stopped. My son has similar issues with anxiety and previous drug abuse, but not had the circadian imbalance you suffer from. (He also has mild WED/RLS; and problems with attention and focus.)

I wonder also about the THC causing worsening. There's so much we don't know about the huge variety of chemicals in the different strains. Even with so-called pure THC and THC-CBD extracts I've had mixed results, half the time or less it seems to help and the rest it makes my sleep fractured; and smoking, back when I tried it, sometimes made the WED/RLS itself unbearable. It was enough to make me give up experimenting with it for years.

If you could ditch the THC and re-introduce it later after your symptoms are under control, you could know for sure.

Meanwhile go for the kratom. I've ordered it no prob (I'm in the NWT). Look up how to consume it on this forum - I think the most effective way seems to be mixing it with an acidic juice.
I'm not sure if kratom affects the bowels like other opioids, but to prevent constipation with normal opioids, you have to eat lots of soluble fibre - that means vegetables, stems and leaves :) There are about as many opioid receptors in the gut as in the brain, so we shouldn't be surprised when opioids have bizarre effects on our guts. (But numbing of the mid-section sounds kind of scary??)

When did you start poker? After mirapex? You haven't mentioned playing compulsively, so it's probably unrelated, but you should be aware that Mirapex/pramipexole and Requip/ropinirole can cause impulse control disorder, which manifests as uncontrollable behavior of some sort - gambling for some, eating for others, sex or shopping for yet others. The behavior disappears when the medication is discontinued.

Your post might have been long but it was easy to read. Paragraph breaks are good!

I didn't mean to sound like I was turning you off of getting your iron bloodwork done - do get it done if you haven't. Unless you're in danger of iron overload (your doctor should be able to confirm that you're not) then you can take oral iron supplements without endangering yourself, and it might help. Worse RLS/WED is associated with low iron; in fact, the disease can be called a deficiency of iron in the brain. Some people (those who haven't taken DAs, mostly) can relieve their symptoms entirely just by taking oral iron. It's not to be sneezed at. But take it with vitamin C and eat veggies! cuz it can bung you up too.

And as fuz_mind says, IV iron can be a better choice.

re travel to the US, you're right not to want to take the chance. If you ever traveled to the US when you had a criminal conviction, they'll still have a record of that conviction, even if you later received a pardon and had your record erased in Canada. If, on the other hand, you had never traveled to the US before getting a pardon, they would never be able to find out about the conviction.

You might have a hard time finding a doctor in Canada to prescribe IV iron unless your ferritin is below 100 and your transferrin sat below 45% - - we can give you resources that will help to convince a doctor to prescribe it if you meet those parameters. There are more progressive doctors who prescribe IV iron for WED/RLS with ferritin up to 300, but I was unable to find one in western Canada. But step 1 is to get a full iron workup including ferritin (have to ask for ferritin cuz it's not included in the normal iron workup). More about iron in the link under my signature - links to useful papers and resources.

I agree with the others - you should begin to hunt for a doctor (1) who has successfully treated many cases of augmented WED/RLS and (2) who can communicate properly with you -who hears and considers what you say. They exist! There's actually lots of good docs out there, so if you can get a good one who doesn't yet know anything about WED/RLS, go for it, and train him/her. If they're willing to learn, to spend a bit of time upgrading their knowledge,then they're worth way more than a so-called specialist who's tired of searching for more information.
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.

Polar Bear
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Re: 1st post after 24 years of RLS

Post by Polar Bear »

Ican'tsleep - I hadn't been thinking of multiple visits to a Quality Care Centre, more of one visit/consultation for advice on how to move forward. However, having read your most recent post it is clear that this is not a option.

Beth's post is magnificent.
I agree that while your post was long it was coherent and set out well to be very readable.

If you are not familiar with Dr Buchfuhrer, he is the author/co author of many publications and is heavily involved with the RLS Community and our RLS Foundation. He works from California and is also greatly involved with the SoCal web page where he has a letters page and posts all of the letters he received and his responses. This link should take you there.
https://www.rlshelp.org/

I do wonder if it would be worthwhile emailing Dr Buchfuhrer. He is very good at responding with advice. Though if you do so may I gently suggest that while giving all relevant information, you keep it as concise as possible.
His email address is somno@verizon.net
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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 »

So first let me say thank you for your very helpful responses

I'll start with my iron (I posted this in the augmentation topics , but I'll put it here as well )

September 4th non fasting bloodwork :

Ferritin 635 Normal 22 - 537 (high)

September 20th fasting bloodwork :

Iron 23 Normal 7 - 29
TIBC 46 Normal 45 - 77 ( on the low side )
Saturation 0.5 Normal 0.2 - 0.5 (on the high side )
Transferritin 2.1 Normal 2.1 - 3.6 (on the low side)
Ferritin 800 Normal 22 - 537 ( HIGH )

my doctor said that the spike in ferritin between the 4th and the 20th September was likely caused by the stress of the mirapex withdrawal . (635 up to 800)
Going back a few years , each bloodwork result shows high ferritin. 

So .... upping my iron past 800 probably would not be helpful

Beth I appreciate your input regarding past drug abuse ..
I may have brought it up in regard to why I even have rls in the first place .
And ya, I do feel regretful and guilty at times ... that was very perceptive on your part .

Anxiety and panic disorder raised its ugly head at age 18, care of early drug abuse , but may have been imminent either way
What was certain, was that my self medicating with daily alcohol and HEAVY cannabis use was only amplifying the anxiety to the point I became a complete agoraphobe from age 24 to 26 (also the age my non24 hour circadian rhythm became full blown and seemingly unrepairable)

I quit cannabis at age 26 and began to slowly reintegrate myself with the world
It was a very very slow process
I did remain on paxil which I figured out even at a low dose was really reducing my sex drive.
It caused similar (but not as severe) numbing as tramadol
.... SSRIs seem to really do this to me
Big reason I want off tramadol
My sex drive and function is impacted by SSRIs far more than any potential hyper sexuality caused by mirapex .

Stopping paxil at age 31 was where I started to get my life back, although I had a crisis with my life occur at age 32 , where I saw my anxiety return full blown , along with acute severe depression
This was treated with short term remeron (which I suffered brief but awful withdrawal)
I also received the best therapy of my life (from a grad student at our local university non the less) for about 6 months
After that , although I remained clonazepam dependent, I had very minimal anxiety
I travelled , I had relationships with friends, I had relationships with women
.... I still had a non 24 hour circadian rhythm disorder through all of this that basically no one knew about or understood (the exception being an ER nurse I dated in 2009, but that didnt work out for other reasons)

I did really really try to make the best out of my life , and if I may say , was doing a pretty good job.
Speaking of job, I actually got one at a job placement centre when I was apparently overqualified for all the entry level employment openings they initially found me

I was the first and only client they ever offered a position to at the actual centre .
... unfortunately my N24 issue led to me being let go .

I then started playing poker
I actually did quite well for years , but its overall impact on my sleep was not helpful
.... add a new baby to the mix and I only had the time to play in short spurts online .

Gambling came before mirapex
I used to bet on sports and play blackjack nightly in the late 1990s
I got that out of my system and completely stayed away from those gambling genres , and was always very disciplined while playing poker just down the hall from blackjack tables even though I was on mirapex 2006 onwards
I also never placed a bet online on sports or casino etc while I played poker online .

I should probably mention in here somewhere that I haven't had a drink since 2006
I've never had a cup of coffee

I was very hesitant to try medical marijuana in 2017 for my rls 16 years after I had quit
My rls was progressing (or perhaps I was slowly augmenting with mirapex)
I tried gabapentin and nearly crashed my car

Marijuana seemed to be the obvious choice over opiods

It was extremely effective in stopping the urge to move
I was able to lie in bed with my 1 year old daughter.
I actually cried the first time I could do this
.... however with time (and worsening or rls combined with augmentation) things got worse

Marijuana just on it's own can seem to cause worsening at times, especially through the night
I tried to go without a nighttime vape last night , but tramadol was not enough and I woke up with rls 30 minutes later
I took three draws of a 25% THC indica and was asleep 10 minutes later
I then slept 4 hours
.... with that said, the complete opposite can happen, especially if I overdo the THC ingestion

I have just begun a mere gram of kratom a couple hours after "lunch"
It's been 5 or 6 days in a row now.
It seems to take the edge off of any tramadol withdrawal from the night before, and also seems to ease my hopelessness and loneliness as I'm up alone all night while I am correcting my backwards sleep pattern

I also take it in the hope it will SLOW DOWN my bowels .
My digestive problems may in fact not be attributed to tramadol, but more to do with the overall stress I've experienced over the last 2-3 months
Regardless, I am definitely not constipated !

What else ....

Oh ya ... I've actually never been convicted of a crime , and never been arrested as an adult
I believe declaring that I was unemployed while travelling to poker tournaments I had earned free entries to, or upscale hotels that a couple friends worked at in the United States raised a flag .

Someone wondered how I could possibly legally afford these trips without a job, and therefore I would need to explain while being harrassed by border agents from both countries
I changed my employment status to "entrepreneur" after this happened a few times, but the harrassment continued
... and this was prior to the legalization of marijuana in Canada

There is no way I can go to the US for therapy

I have requested an acceleration regarding my new neurologist consultation, and I believe my family doctor will help facilitate this
I'm hopeful he or she is a bit more compassionate

My next order of business will be to send a more condensed version of my current situation in an email to Dr. Buchfuhrer , care of Betty's wonderful suggestion !

Correspondening online with a true professional would be so immensely helpful
I believe I want to replace tramadol with codeine or kratom (or a combination of the two)

If that doesn't work out , I apparently must be open to the idea of resuming mirapex at 0.0625mg

Anyhow ... I thought I'd answer a few more questions
Congratulations if you made it though another very long post

I'll leave it here for now

I hope all of you are got some wonderful restorative sleep while I wrote this !

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Sorry about not connecting your topic in the Augmentation forum with this one. I can't be here every day anymore, so I get behind and then I miss connections like that.

Ferritin super-high but iron normal, TIBC low-normal, Sat. high-normal, transferrin low-normal. I'm not sure what it all might mean - Holland might have ideas. I will think about it, though. Just an initial guess, those super-high ferritin numbers associated with relatively normal iron numbers are probably a sign of chronic inflammation of some sort. (see also my reply in your Augmentation Forum topic)

Cannabis definitely contributes to anxiety. It's so sad that so many young people suffer like you did without anyone recognizing the agony they're going thru.

You've done a remarkable job of getting off of multiple drugs, prescribed and not. You're not going to stop now, no matter what I say, but I do want to say to stick to it, because I believe you'll find a way to fix yourself.
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
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Location: Palo Alto, California

Re: 1st post after 24 years of RLS

Post by stjohnh »

Icantsleep wrote:...
I'll start with my iron (I posted this in the augmentation topics , but I'll put it here as well )

September 4th non fasting bloodwork :

Ferritin 635 Normal 22 - 537 (high)

September 20th fasting bloodwork :

Iron 23 Normal 7 - 29
TIBC 46 Normal 45 - 77 ( on the low side )
Saturation 0.5 Normal 0.2 - 0.5 (on the high side )
Transferritin 2.1 Normal 2.1 - 3.6 (on the low side)
Ferritin 800 Normal 22 - 537 ( HIGH )

my doctor said that the spike in ferritin between the 4th and the 20th September was likely caused by the stress of the mirapex withdrawal . (635 up to 800)
...
Yes, these iron results are most likely due to inflammation, though I'm not sure that the Mirapex withdrawal stress actually causes inflammation.
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:
Icantsleep wrote:...
I'll start with my iron (I posted this in the augmentation topics , but I'll put it here as well )

September 4th non fasting bloodwork :

Ferritin 635 Normal 22 - 537 (high)

September 20th fasting bloodwork :

Iron 23 Normal 7 - 29
TIBC 46 Normal 45 - 77 ( on the low side )
Saturation 0.5 Normal 0.2 - 0.5 (on the high side )
Transferritin 2.1 Normal 2.1 - 3.6 (on the low side)
Ferritin 800 Normal 22 - 537 ( HIGH )

my doctor said that the spike in ferritin between the 4th and the 20th September was likely caused by the stress of the mirapex withdrawal . (635 up to 800)
...
Yes, these iron results are most likely due to inflammation, though I'm not sure that the Mirapex withdrawal stress actually causes inflammation.
Inflammation of what ?
My gut ?

Mirapex stress was just a suggestion
He told me last week I know more about rls than he does
This was just my family doctor and not a specialist

Any suggestions as to what I should be doing differently?

stjohnh
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Re: 1st post after 24 years of RLS

Post by stjohnh »

Icantsleep wrote:
Inflammation of what ?
My gut ?
Gut more likely, but would need your whole medical history and all of your blood test results to make a better guess.
Blessings,
Holland

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

stjohnh wrote:Time to get a new RLS doc.
I have an appointment on Monday with new neurologist who apparently has significant knowledge of all or most things RLS right here in Ottawa

Went from a 6 month wait , but with a little persistence, I'm now getting in next business day !!

Any advice as to what I should focus on during this first visit (I dont want to dump a whole bunch on this guy at once)

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

The appointment should be about your WED/RLS since that is your primary complaint. My thoughts follow, but I might not be right :) :

He needs to know of your non24hr circadian disorder, and other illnesses you may have, but don't start with that. He needs to know your history (much as you outlined it in one of your posts here), but let him ask questions about it when he wants to. You might even write a point-form timeline.

Have your current medications - name, dose, time you take it - written down to hand him. You can add the names of other medications you've tried for WED/RLS, & fill in the details verbally if he wants more info.

If he is not familiar with WED/RLS start by describing the symptoms. Assuming he is familiar, start with the impact the symptoms are having on your life,
and state clearly what end result you want. eg: You want to be able to sleep during normal sleeping hours. You want to be able to sleep soundly and wake up feeling refreshed. You want to alert and focused during the day.

I should do better than this but my brain is unavailable right now. Need some sleep. Good luck with that appointment. I know he's supposed to be an expert, but be prepared for him not to know as much as you hope.
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.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So new neurologist is VERY knowledgeable regarding RLS and sleep etc etc

Iron
Augmentation
All sorts of stuff

Spent nearly 2 hours with him just now and covered alot

Not making any changes quite yet as I have only been mirapex free for 8 weeks and still continue to see RLS symptoms diminish (fingers crossed)

We talked gabapentin briefly but I'm not too keen on that .
He asked if I'd ever be interested in resuming mirapex at lower dose and closely monitoring for augmentation.
.... again , we arent doing anything until we get as close to baseline as possible

He was also very interested in my circadian rhythm disorder

Have requested all medical records from previous (and technically still) my sleep specialist

Have been told to keep diaries of sleep/wake times , meds and doses (tramadol and THC), and rls symptoms/severity/location
... also a headache diary ( I do still have tension headaches, but not as frequent)

I have a follow up in 2 months

He's young and likely not stuck in his ways
Very professional and seems very keen and thorough.

stjohnh
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Re: 1st post after 24 years of RLS

Post by stjohnh »

Yay!!
Blessings,
Holland

Frunobulax
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Re: 1st post after 24 years of RLS

Post by Frunobulax »

Icantsleep wrote: Inflammation of what ?
My gut ?
[...]
Any suggestions as to what I should be doing differently?
Silent inflammation may not be visible, it shows up only in some blood markers. Basically your immune system is stimulated to attack your own cells, and we have some theories about this, but nothing definitive. But we do know that inflammation raises Ferritin levels, among others. (For one theory on inflammation see this thread: http://bb.rls.org/viewtopic.php?f=5&t=10599. I think the theory that inflammation is caused by a high-carb diet in combination with a lot of omega-6 fats looks fairly plausible.)

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So after fixing my sleep pattern (for now) and got over this horrible chest cold I have moved back into my house with wife and kids

I am sleeping in our inlaw suite (formally for my inlaws who have since moved on)
I am far away from noise etc
Sleep conditions are basically ideal .

..... I have 4 or 5 RLS interruptions that I wasnt experiencing while at my parents
I still get help from my mother (and wife) with kids
.... unsure if the stress of parenting even part time is the factor (?)

Current meds are not doing their job

Its brutal
I basically now sleep 2 hours in a bunch of pieces

I thought I was making progress, but I get this

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

It's such an up-and-down disease. How were the last two nights?
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.

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