Need Support

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oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello everyone..it's been hell and I only am using .50 of the requip/ropinirole.
No help from the doc. I know you all sufferred more than I; but then no one can actually measure anyone's suffering. I have not slept for 4 days aside from 1 hour here and 20 min there.
Anyways NO iron serum ferritin done due to MSP will not pay for the test.
Going to my doc tomorrow. Requesting an Rx for my dilaudid, ativan and emtec.
Praying I get it. Thursday September 5th I see a natural path. She will do the serum ferritin test at a price of course. But I need to know this.
She's as well seeing me for one hour. I am in the process of standing and trying to fill all the necessary paper work out. [sorry for the whinning] Thank you all for your support in the meantime and i will keep you posted.
Again I will humbly * request for a neurologist referral.

Sincerly, Oceanwalker

ViewsAskew
Moderator
Posts: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

Is the ropinerole just not helping? I didn't read back all the way to remind myself of the circumstances - I should have....
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.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Need Support

Post by rthom »

Oceanwalker, I only have a minute (am busy canning), anyway, everyone has their own path and abilities to cope--this means it doesn't matter at all who has worse symptoms, we all suffer and for each of us it is affecting our lives in a negative manner or we wouldn't be on here. Please for you and all the others that have worried about this-- don't worry, it's not important at all. All that matters is your path in life, as you alone have to follow it. Remember the rest of us are here to help ourselves and hopefully in the process help others, to what degree is up to each of us.
I hear the frustration and desperation in your voice, is there anything else we can do to help?
P.s. I think your Dr is a knob (politely put) to leave you this frustrated and without means or direction to help yourself.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi Ann and HI RThom:
Ann the ropinirole has lost the effect or I suppose I am augmenting/I cut the 1 mg tablet in half now on day 5 and of course I am up 24/7. But I will continue to do so. RLS and arms were getting bad prior to cutting down. My doc wants to try me on Mirapex but I don't wish to do another DA. It's been too much. First it giveth and then the wrath of the DA is upon me. Honeymoon Drug I hear it's called...in a poor relationship of assault and battery ... Ah well..we do what we can.

RThom thank you for saying that..it made me feel better. I feel like a spastic elastic. Last night I went to sleep YaY!!!! from 10PM (after using clonazepam,dilaudid&gabapentin) had to do what I could to not go gaagaa. Slept from 10PM to 2:30AM unreal and I thank God for it!!!!
I thank you all and am Praying for each and everyone here for relief from this horrific situation.
Again I go this am with a humble heart to my GP and tomorrow to the Homeopathic doctor for the ferritin glucose testing. At a whopping cost to me however; I found out I get some $$$back from my extended health. In either way I need this test to determine where I am at.
Yes I hear you RThom... knob sounds great:( sad but true.

Thank you all for your posts and your support !!!

Sincerely,
Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hi every one!
Well I went to my GP one day; then to the naturopath the next.
The good news is My GP really heard me and I believe he's educating himself.
I was given all the necessary meds I require and his attitude was heartfelt.
Next step will be to work on getting a neuro appt as well as the ferritin testing.
I may even ask and pay for it via the Naturopath.
She (Naturopath) was hyper and she really did not hear me. I Q'nd many of her *ways and she kept on stating that if I continued to Q'n her we would not work out.
Prior to even looking at my WED/RLS she wanted first and foremost a commitment of 3 months to take all necessary supplements she recommended. I paid a very hefty fee for the visit as well as a lot of money for some supplements. Doubt I will take them they are very questionable to me. I did not like the time I spent with her. She's well known in this city and well liked..but for me it was zip :( She didn't consider the ferritin test until after 3 months.
It's all so confusing and all extremely expensive. I knew there was a big expence but not this much.
Still sleeping about 3 to 3.5 hours and sometimes one hour in the am ...
Time will show me the way with this situation.
There's more but I am far too tired to type and of course the RLS is kicking my butt.
All week I cut the 1 mg tablet of ropinirole in half ...the coming week one more half and then small amounts and then hopefully a *drug holiday* not sure if I will continue this medicine??
Just will take me some time to figure it all out.
Many thanks for all the support and information I get from everyone!
Was able to direct another sufferring person here in the area to this webpage.
This made me happy .

Sincerelyl,
Oceanwalker

badnights
Moderator
Posts: 5869
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

How much Dilaudid/hydromorphone do you have (i.e. are you getting refills?), and was it prescribed for WED or something else? When you say your doctor gave you all the medications you need, what were they? Are you aware that Dilaudid and gabapentin are used for WED? (Also clonazepam, but most people agree it does not treat the abnormal sensations, just the insomnia; it may actually cause daytime symptoms because of its long half-life and the fact that relaxation triggers the WED sensations.)

You might have enough Dilaudid to stop the ropinirole completely? The idea is to increase the opioid dose to cover the increased symptoms, then reduce it as the symptoms diminish back to their baseline level. This has to be done with your doctor's knowledge, though; you may need more Dilaudid than prescribed, depending what it was prescribed for.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello Beth and to answer your Q I see my doc each month or more often. I do not get refills. He moniters my usage .. and I am very careful with these medicines.
I am aware of their strength etc.
I was first prescribed rivotril aka clonazepam about 25 years ago or so..unsure of date... after I had WED's really bad and after my back surgery. This was after several other medications failed to address one iota of the WED's. Was sent from neurologist to neurologist. Most of them were unaware of what was wrong. Then after a long while I ended up in the sleep disorder clinic for 2 or 3 days. There they diagnosed me with RLS or now as I / we know it as WED/RLS. The doctors there started me on the rivotril to used 4 x/ day... At that time they did it to have it running in my system constant. It was the only thing that helped and the only Rx that worked. So I was on that (decreasing over time in daily strength) and continuing to take rivotril off and on..more on since then ..to present. As I said before ..never had the WED's (only once every 4 to 6weeks or so ? one night and then that was it. I could handle that. Then after this past knee surgery in March of this year ..May it kicked in full blast ..24/7. I take 2x2mg.dilaudid at bedtime with 1x300 gabapentin and 1xorange rivotril aka clonazepam. (sorry tired / it's a small dose) I am sure it's masking most of the increased symptoms. Of course I will reduce the dilaudid and the rivotril as the symptoms disappear. Dilaudid was first prescribed for me for pain from the last surgery. Then lately I tried different medication combinations..this one seems to work best ...atm.
This is probably why the daytime symptoms have diminished so much.? AND along with the Emtec (Tylenol 3 without codeine). This I take 3 times per day 30 to 60 mg. and also I take the gabapentin during the day with each Emtec (1 x 300mg. gabapentin).and the half of the rivotril. So far this is working. I started to cut down more on the rivotril and the emtec but the doc stated not to until we have a grip on everything. He is being more open and much more helpful. When I stated I get all the medications I need/want...I should have been more specific. Sorry.
I am now on the last few days of .25 ropinirole and soon to stop. As I previously stated in this or posts on another thread..not sure if I will go back to the ropinirole?? I just don't know. So far the symptoms are now a bit more milder but I only sleep minimal. They still wak e me up and I am still unable to sleep due to the urges or the symptoms to move.
I Pray all this helps explain my present situation. I am so so tired.
Thank you for replying Beth. (I do walk a lot and exercise as well)
Thank you everyone for the help here ...I will keep you all posted.
Sincerely,
Oceanwalker.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Well I posted on **Nice to Find you ..... and I am reposting here as well. I suppose I should stay on one thread? sorry if I messed up.

Well ...here it is Sept. 14th. seems like one month ago I posted lol. I have been reading a lot here and it's fantastic information. Family members as well are getting educated. Not all but some..it's a great start.
My plan on totally giving up on the ropinirole didn't work yet; because I haven't tried it yet. Still on .25 approx. of ropinirole. I need to have at least 2 weeks or so with no doctor/or any other appts. As well as NO company family or friends staying here.
With the help of the dilaudid and rivotril at bedtime I am able to get more sleep than before for some unknown reason? 2 hours at bedtime/I wake up and walk around for 1 hour/back to sleep for another 2 or so hours. This is great for me. Absolutely still getting a lot of sensations during the day ..but I am doing the best I can. Developing quite the leg muscles.
Again Thank you all for the amazing support.
Wishing everyone all the best !
Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Well it's day six and ugh!!! Off ropinirole for 6 days. I know - no biggie- but for me it's been absolutely horrific. Have an appt.with my doc this coming Friday. That will be day nine...I believe. Anyways I don't know what to do. By that I mean I don't know if I should take a drug holiday?? or stay off of ropinirole as pre planned? I will again ask my doctor again his opinion..and I already think I have that answer. I don't see any doc's specializing in WED/RLS anywhere here or Vancouver that I can visit. Am taking gabapentic, rivotril, and dilaudid for my WED/RLS. They are just short acting and short lasting. There is no sleep anymore...just total body exhaustion type of sleep for 30 minutes or so.
I joined the Willis-Eckbom Disease group on FaceBook and it's been interesting. Helps at times when I am able to actually sit at the computer. (which is not often)
Does this *Drug Holiday* work at all??
Thanks to all and to all the very best
Sincerely,
Oceanwalker

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Need Support

Post by rthom »

I was looking for Dr info in Vancouver a few month ago and this is what I was told by someone out there:

Finally I got a message back here it is, don't know how helpful though. :roll:


{Randy, My apologies! The lady I had hoped to give a recommendation of a Dr. is no longer available. Dr. Jim Melling (in Victoria) is aware of RLS and treatment but I’m not sure up-to-date.

Try this. Contact the sleep center at UBC



I hope this helps some.

ViewsAskew
Moderator
Posts: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

If you have augmented on ropinerole, it will take 2-3 weeks without it before your symptoms settle down. Most people do not do this without their doctor's help and with a prescription of an opioid that is strong enough to cover the symptoms.

Am I right in thinking you decided to do this on your own? How much hydromorphone (Dilaudid) are you taking? Most doctors use a longer-acting opioid, such as an extended-release version or methadone to resolve the problems associated with augmentation.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello RThom and ty so much for that doctor's name. I will surely look into this this evening.

Dear Ann ..yes you are correct! I did this on my own and had NO idea it would take 2-3weeks.
Well my doctor's really not up on all of this. I use 2mg dilaudid (short acting) I use 1 at 7am
1 at 12 noon 1 at 4pm and 2 at night. Along with one rivotril and one gabapentin.

I would venture to think my doctor's really not into giving me methadone or anything similar or for that fact anything stronger than the present 2mg short acting dilaudid.

Am for sure going to try to see the doctor at UBC sleep disorder clinic like RThom suggested and I thank you Ann and RThom for this information.

Sincerely,
Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Time has just flown by and I had a good respite from the WED/RLS
It's back full blown at night ...but not 24/7
After all the educuation the doctors still don't see it the way we do.
I cannot get into a sleep disorder clinic cos I need a referral and due to a W/L of 2 or so years ...there's no hope atm. Anyways..I will try to trudge on as you all do as well continue to educate.
Thanks all for being here.
Hope you all had a Great ThanksGiving;)
Thank you all too for your Hope and for never giving up !!!
Sincerely ..
OceanWalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

OKay I shouldn't be posting in 2 places :( I apologize.
Been Posting in *Nice to Find You I have had RLS for 45 Years*

So I will just stick to here in *NEED SUPPORT*

Hello...well the flutters are over and the full blown WED/RLS is back at night ...
At night and not 24/7 yet.
I Pray and Pray it stays away.... and yes Beth it is sad that we need to educate everyone but we do!!
One of the doctors (who is awesome) after I showed him the information RE: WED/RLS stated "we don't want to give our patients a problem of addiction" EEEekkk ADDICTION???? grrr I advised him that NOTHING had changed with my intake of opiodes but i guess he just didn't get it? I have been taking the 2 dilaudids every night past umm almost 2 years. Without it... life would be unbearable. But even after I showed him the info he still didn't want to 'get it'. So I don't know. I will just Try Try to convince them.
It seems there's only a small handfull of doctors that understand this dilema.
I won't stop educating. I will continue to Try.

All the best to all

Oceanwalker

Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Why can some doctors just not get it ......... The difference between 'addiction' and '''dependence because of need for as near a normal life as is possible'''.
I am willingly 'dependent' upon prescribed medication and without it .... I don't know.... would likely be addicted to whatever I could get my hands on to provide some relief.
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

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