1st post after 24 years of RLS

[Icantsleep]

So it's a good thing that the one specialist who is still trying to help me sought the advice of a mental health expert from the Ottawa Hospital as opposed to the Royal Ottawa mental health center

This was for my Clonazepam taper , and a full assessment was involved
This now trumps the Royal's assessment

His findings were that I had RLS , a CRD, and lastly anxiety SECONDARY to these aforementioned medical conditions.

That is in stark contrast to my assessment in March 2020 at the Royal Ottawa.
... that doctor determined that I had generalized anxiety disorder, anti social disorder, and here's the kicker , SOMATIC SYMPTOM DISORDER

In other words... I had RLS because I THOUGHT i had rls , therefore this is what was CAUSING MY RLS !!!!!

The report is preposterous, and nearly cost me my pain management appointment
My thoughts and anxiety were the root cause of my RLS, and THIS should be the only focus of my care lol.

Now that I've seen it, it is remarkable that the manager of CPM Ontario even gave me a second look .
I can't believe this report is in my chart for other doctors to see

It is so sad that anyone with a mental health issue, whatever the cause, essentially puts their life at risk by seeing a mental health "expert"

.... at least they do in Ottawa

I'm going to need to put this aside for the moment and actually focus on developing a rapport with the pain management doctor.
I sure got off to a tough start .

[ViewsAskew]

So it's a good thing that the one specialist who is still trying to help me sought the advice of a mental health expert from the Ottawa Hospital as opposed to the Royal Ottawa mental health center

This was for my Clonazepam taper , and a full assessment was involved
This now trumps the Royal's assessment

His findings were that I had RLS , a CRD, and lastly anxiety SECONDARY to these aforementioned medical conditions.

That is in stark contrast to my assessment in March 2020 at the Royal Ottawa.
... that doctor determined that I had generalized anxiety disorder, anti social disorder, and here's the kicker , SOMATIC SYMPTOM DISORDER

In other words... I had RLS because I THOUGHT i had rls , therefore this is what was CAUSING MY RLS !!!!!

The report is preposterous, and nearly cost me my pain management appointment
My thoughts and anxiety were the root cause of my RLS, and THIS should be the only focus of my care lol.

Now that I've seen it, it is remarkable that the manager of CPM Ontario even gave me a second look .
I can't believe this report is in my chart for other doctors to see

It is so sad that anyone with a mental health issue, whatever the cause, essentially puts their life at risk by seeing a mental health "expert"

.... at least they do in Ottawa

I'm going to need to put this aside for the moment and actually focus on developing a rapport with the pain management doctor.
I sure got off to a tough start .

OMG - so lucky you went to another doc! But, think of all who cannot. Ugh.

[Icantsleep]

Finally talked to a hematologist about my sky high ferritin

.... guess what reading the lab omitted from the blood work requisition....

Ferritin lol

Anyways... I'm going to have a different genetic/ hemachromatosis test

I voiced my concern about treating iron overload In the unlikely hood it would be necessary.
We all know the correlation between low ferritin and RLS

She said if I don't have indications of iron overload, we could look into the root cause of my very elevated ferritin.
... perhaps inflammation, which may contribute to my rls or even be the cause (????)

Problem is, it will take 3-4 months to get these test results , then potentially change the focus to inflammation

How does a lab do an iron panel and forget the ferritin reading ??

[stjohnh]

Finally talked to a hematologist about my sky high ferritin

.... guess what reading the lab omitted from the blood work requisition....

Ferritin lol

Anyways... I'm going to have a different genetic/ hemachromatosis test

I voiced my concern about treating iron overload In the unlikely hood it would be necessary.
We all know the correlation between low ferritin and RLS

She said if I don't have indications of iron overload, we could look into the root cause of my very elevated ferritin.
... perhaps inflammation, which may contribute to my rls or even be the cause (????)

Problem is, it will take 3-4 months to get these test results , then potentially change the focus to inflammation

How does a lab do an iron panel and forget the ferritin reading ??

Most people that have hemochromatosis have a ferritin of over 1000.

Labs define the term "iron panel" in many ways, there is not a medically defined "iron panel." Many labs do not consider the ferritin as part of the iron panel. When dealing with labs and doctors it is best not to use the term "iron panel." If there are iron related tests you are wanting, better to tell the doc exactly which tests you want.

[Icantsleep]

I didn't walk in to a lab saying "hey, can you give me an iron panel ?"

I had a requisition from the hematologist that clearly asked for the ferritin, along with numerous other specific items.
I still have the digital copy

Over the past few years my ferritin level has been between 650 and 900
... most recently about 900 in Fall

It would have been neat to have a more recent number.
This is the first time to my knowledge I've had this occur.

Anyhow......

Pain management consultation is tomorrow !

[Rustsmith]

I'm not sure that I understand why it takes weeks to get the results of your hemachromatosis genetic test. Like you, I have a long history of high ferritin (600 or more for several years). Last summer my PCP offered to figure out why my ferritin remained so high and so she ordered a genetic test for hemachromatosis. I got the results in about a week and they were negative. Ironically, the ferritin test that was done in the same blood draw came back as 250, the lowest it has been in many years. I wish that all this helped with my RLS, but I remain in the IRLSSG's Very Severe category if not treated and moderate with treatment.

And good luck with your pain management appointment. I hope you get the result you are looking for.

[Icantsleep]

I'm not sure that I understand why it takes weeks to get the results of your hemachromatosis genetic test. Like you, I have a long history of high ferritin (600 or more for several years). Last summer my PCP offered to figure out why my ferritin remained so high and so she ordered a genetic test for hemachromatosis. I got the results in about a week and they were negative. Ironically, the ferritin test that was done in the same blood draw came back as 250, the lowest it has been in many years. I wish that all this helped with my RLS, but I remain in the IRLSSG's Very Severe category if not treated and moderate with treatment.

And good luck with your pain management appointment. I hope you get the result you are looking for.

I'm not sure that I understand either lol

I'd love to rule out hemachromatosis and get on with finding the source of inflammation, if that is in fact the culprit

Until then my best hope to treat rls is pain management (and the accompanying side effects)

[Icantsleep]

So just to update

I have no updates

Nothing from hematology

More surprising is nothing from pain management

As much as I chase them down with the help of the office of my family doctor , all the stuff discussed in my one and only pain management appointment has been just talk

No follow up or following of any kind is planned

I won't get into what was discussed in my 90 minute consultation until actual recommendations reach my family doctor
What was supposed to take 3 days has been over 3 weeks

[badnights]

It must be frustrating to have to sit there and wait. At least you're looking into other possible treatments meanwhile.

[Icantsleep]

So I finally talked with my family doctor .
Between pain management's ideas and my 2 other sleep specialists recommendations the sky is essentially the limit in terms of pain management medications
My family doctor will do all the actual prescribing, at least at this point .

Ideas include :
All opiods (within reason I imagine) ... unfortunately there is nothing perfect without side effects of course .

Butrans patch was heavily discussed, I just don't like the idea of round the clock opioid dependence .
I'm also concerned the dose I'd need for nighttime coverage would be such sever overkill during the day .
A patch is worn for 7 days before replacing.
My family doctor thought I may be able to take it off and put it on again , but that's not the case .
I believe I'll try at least one patch at the lowest dose sometime soon to see what happens

Naibilone and/or various natural or synthetic THC nasal sprays
Injections if I really wanted or thought they'd be beneficial in any way
Another spinal stimulator referral if I wanted (my movement disorder neurologist put one in already... not that I'm going to do it at this point )
A ketamine/lidocaine nasal spray .... lidocaine because the K burns your nose so bad .... " people love it "
Group therapy for coping strategies (with other choric pain patients )
Other lower grade stuff like more magnesium (which only makes me VERY sleepy without rls coverage)

Cutting Codeine contin 50mg was given the ok , but that only happened once (it hit me HARD in about 60 seconds and only lasted about 2 hours ) ... so not an option

Codeine contin 50mg seems to be my best bet right now for a 12 hour coverage without horrid side effects, although I'm still avoiding actually using it for some reason... probably reluctant to live with OIC more than the excessive sedation..

I've actually gone back to 0.25mg Neupro patch for a few days to reduce Codeine significantly so I can eat for a few days and to hopefully get Codeine to preform better once resuming higher doses ( 75mg seems to do nothing at all except make me constipated)

DAs never last though ... here's to hoping Dr. Ondo or someone gives Ecopipam or something similar a fine tuning and solves Augmentation for all of us !
I think this would be unicorn solution I'm holding out for lol

All my doctors would prefer if I actually had a pain management doctor follow me
I only got a one off consultation... basically because centres for pain management Ontario don't really actively treat rls

My only follow up at this time is with my newer sleep specialist.
She is well connected and is definitely not the rls expert between the 6 doctors I've seen lately, but she tries the hardest to figure it all out
She hounded my old sleep specialist for opioid ideas and all around better care ideas

She has also asked me to look into diprydamole and parempanel , but I've rambled long enough and that will be another discussion.
Although I suppose since I can basically have access to any drug , your thoughts and ideas are welcome

[ViewsAskew]

So I finally talked with my family doctor .
Between pain management's ideas and my 2 other sleep specialists recommendations the sky is essentially the limit in terms of pain management medications
My family doctor will do all the actual prescribing, at least at this point .

Ideas include :
All opiods (within reason I imagine) ... unfortunately there is nothing perfect without side effects of course .

Butrans patch was heavily discussed, I just don't like the idea of round the clock opioid dependence .
I'm also concerned the dose I'd need for nighttime coverage would be such sever overkill during the day .
A patch is worn for 7 days before replacing.
My family doctor thought I may be able to take it off and put it on again , but that's not the case .
I believe I'll try at least one patch at the lowest dose sometime soon to see what happens

Naibilone and/or various natural or synthetic THC nasal sprays
Injections if I really wanted or thought they'd be beneficial in any way
Another spinal stimulator referral if I wanted (my movement disorder neurologist put one in already... not that I'm going to do it at this point )
A ketamine/lidocaine nasal spray .... lidocaine because the K burns your nose so bad .... " people love it "
Group therapy for coping strategies (with other choric pain patients )
Other lower grade stuff like more magnesium (which only makes me VERY sleepy without rls coverage)

Cutting Codeine contin 50mg was given the ok , but that only happened once (it hit me HARD in about 60 seconds and only lasted about 2 hours ) ... so not an option

Codeine contin 50mg seems to be my best bet right now for a 12 hour coverage without horrid side effects, although I'm still avoiding actually using it for some reason... probably reluctant to live with OIC more than the excessive sedation..

I've actually gone back to 0.25mg Neupro patch for a few days to reduce Codeine significantly so I can eat for a few days and to hopefully get Codeine to preform better once resuming higher doses ( 75mg seems to do nothing at all except make me constipated)

DAs never last though ... here's to hoping Dr. Ondo or someone gives Ecopipam or something similar a fine tuning and solves Augmentation for all of us !
I think this would be unicorn solution I'm holding out for lol

All my doctors would prefer if I actually had a pain management doctor follow me
I only got a one off consultation... basically because centres for pain management Ontario don't really actively treat rls

My only follow up at this time is with my newer sleep specialist.
She is well connected and is definitely not the rls expert between the 6 doctors I've seen lately, but she tries the hardest to figure it all out
She hounded my old sleep specialist for opioid ideas and all around better care ideas

She has also asked me to look into diprydamole and parempanel , but I've rambled long enough and that will be another discussion.
Although I suppose since I can basically have access to any drug , your thoughts and ideas are welcome

Really good outcome. Hope you find something that works well, and for a long time.

[Icantsleep]

Really good outcome. Hope you find something that works well, and for a long time.

Not being restricted in terms of treatment is definitely helpful ...
Now if only I can find something that manages symptoms/allows me to sleep with bearable side effects

Going back to Neupro patch is definitely not the answer.
It's wonderful for a few days but by night 5 or 6 it clearly makes things worse
Will be increasing Codeine and eliminating the DA once again tonight

Going to look into perampanel and diprydamole.
... I'm about halfway through the thread here in the forum from 2018
Tough to read and comprehend medical terms when you're severely sleep deprived

[badnights]

You don't really need to understand all of the dipyridamole stuff - - I can't remember it once I've written it down, it leaks right out of my brain. The important thing to remember is that a few members here have tried it, and it worked well for some and not at all for others. Those for whom it worked had to tweak it before they got the right dose and combination. (Holland, was there anyone other than you? I thought one other person.) I would try it if I were you. Be prepared for some experimentation tho.

As for Perampanel, since it's an anti-convulsant, maybe you won't have much different effect than the anti-convulsants you've tried already, or maybe you will, because it's a different type. I had never heard of it before. Thanks for bringing it up! https://pubmed.ncbi.nlm.nih.gov/28522077/

When you have so many choices, and such a modern doctor, your only problem will be getting thru the experimentation, because trying a new medication is not a one-day thing. I hope you find one of those things that does you enough good that you can get your life back together!

[stjohnh]

I used dipyridamole for few months several years ago before I started on IV iron, it did indeed help, mostly with improved feeling of well being. Hard to describe, but it definitely helped. You may have to try taking different doses of the drug. I found that the best dose was lower than the sample research data.
Look here: viewtopic.php?t=10114

legsbestill used dipyridamole with good results. Similar effects to what I experienced "improved well-being."

James7 also took dipyridamole, but not specifically for RLS. It is not clear how much it helped his RLS.

[legsbestill]

As Holland says, I gave dipyridamole a good try back in 2018. Weirdly, it alleviated the creepy crawly sensation which has never returned to the same degree even though it is nearly 3 years since I took dipyridamole. It also greatly improved my daytime well being and cognitive function. However, it never really helped with the urge to move which is my main problem. Eventually, I discontinued it but my verdict was it was well worth trying. Surprisingly, the good parts remained even long after I stopped taking it.

A new study by Garcia-Borreguero, Ferre and others seems to confirm the findings of the 2018 study that it significantly alleviates symptoms in patients who have previously untreated rls - https://pubmed.ncbi.nlm.nih.gov/34137476/
However, given the number of people who have reported trying dipyridamole on this and other forums and found it to be of limited help or, in some cases, actually an exacerbant to their symptoms, it seems that it is not as helpful to people who are already in receipt of pharmaceutical treatment. It's hard to know whether this is because some of the treatment options (eg dopamine agonist) may result in a permanent alteration in physiology/rls response to dipyridamole or because the study group had not previously sought treatment because their symptoms were not so severe that they felt they needed to and perhaps that dipyridamole is really only helpful for those with mild symptoms.

The mean dose that the group was on (217.8 mg) seems quite high. From memory, I found it gave me a terrible headache when I exceeded 200mg.