reflections on a bad trip to the RLS specialist

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Dsinger
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reflections on a bad trip to the RLS specialist

Postby Dsinger » Tue Sep 19, 2017 5:58 am

After reading some wonderful and informing posts from sufferers, I can't help but recall a specific trip to the RLS "guru". We made our reservations for this out of town trip then packed up and drove the 6 hours to the big city in Texas. The hotel was great and we thought all was going to be better after the appointment with the much spoke about Nero. All of the new patient info. had been given prior and the interview with the Dr. was going fairly well when he stood up to begin his plan of action when he uttered and I quote "you know.......there are worse things than RLS." I remember being stunned beyond words. After a 6 hour drive and numerous preparations my new Specialist says something so very obvious and cold. My God of course there are "worse" things but I was there for HELP with "this" thing. My faith in him was shattered but after some months passed he did actually call on the phone to discuss treatments. I just never understood why he would say that and I never forgave him. Neros are considered to be a "cut above" but can really be tough to deal with as I'm sure many of you have discovered. Thank you for allowing me to vent on an old sore spot.

Polar Bear
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Re: reflections on a bad trip to the RLS specialist

Postby Polar Bear » Tue Sep 19, 2017 11:02 am

I fully understand your frustration.
What an unfeeling comment for the neuro to say. As a Neuro treating RLS he should have the understanding that we know there are worse things than RLS, but RLS is still debilitating and it is 'our' RLS and 'our' pain and 'our' debilitation. His empathy was very lacking.
Did his treatment and the follow up call regarding treatment provide any benefit?

My own private appointment with a Neuro, paid fully be me, was less than useless. His comment was to say..... ""Yep, RLS. Just continue with your GP working through the various medications.""

Please vent when you feel the need. We all do it some of the time.
Betty
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ViewsAskew
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Re: reflections on a bad trip to the RLS specialist

Postby ViewsAskew » Wed Sep 20, 2017 6:49 pm

While it never surprises me....it always angers me.
Ann - Take what you need, leave the rest

Managing Your RLS

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legsbestill
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Re: reflections on a bad trip to the RLS specialist

Postby legsbestill » Fri Sep 22, 2017 10:52 pm

This story stuck in my head so strongly. It is beyond outrageous to be told by any health professional about any condition that 'there are worse things'. But in relation to RLS/WED??!!! Persistent sleep deprivation is used as a form of torture by oppressive regimes. My understanding of torture is that it makes the sufferer wish for the ultimate 'worst thing', ie death. Who amongst those who experience severe RLS have not had those thoughts? How much worse can things get?

Polar Bear
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Re: reflections on a bad trip to the RLS specialist

Postby Polar Bear » Sat Sep 23, 2017 5:48 pm

Regarding sleep deprivation - ----
up and about at 1am.... 2am.... it eventually gets to 7am.... still up.
Then find some sleep at 7am but have a pre-arranged appointment at 10 am.
Not much sleep there.

Tired and weary the joy is sucked out of life as the body becomes an automaton moving forward without the pleasure of looking forward to going to bed for the night and getting some refreshing sleep.

Into bed the next night at 11, may sleep for an hour or may not, up again.... go walkabout.... it's 1am, 2am..... do some reading, do a chore, maybe catch an hour's sleep, up again... go walkabout again.
And this is just the hyper alertness/insomnia.

Add to the mix some RLS symptoms which might mean that reading isn't an option as we walk and walk because we're also exhausted, so do some stretches, maybe the RLS symptoms settle a little. So try lying down........ ah.. but being wide awake/alert won't let the sleep come. Try reading again.... fed up reading.... oops need to get up again, not RLS symptoms this time just the urge to get up.....go and make tea/toast (again) ...... hmmm... so now we know why the weight is creeping up and up !!
Betty
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badnights
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Re: reflections on a bad trip to the RLS specialist

Postby badnights » Sun Sep 24, 2017 5:32 am

Betty - I know you've tried a few different sleep aids - are there any major classes of sleep med that you haven't tried? Or any members of a class you've tried that might be different enough to be worth trying? Adding a bit of trazadone to my zopiclone has been very effective for me this last month; there must be something out there that could do the same for you.

On a different note, there's the ropinirole. Although it's not as frequent as drowsiness, chronic insomnia can be a side effect of ropinirole. Since your dose is painfully high anyway, you must be questioning if it's doing you more harm than good at this point. Is it time again to think about getting off it? Is it time to find a doctor will take that journey with you?
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: reflections on a bad trip to the RLS specialist

Postby Polar Bear » Sun Sep 24, 2017 11:11 am

Beth - You are so right, my ropinerole is way too high, from the days of when 4mg was the OK dosage. It is fear that stops me going off the ropinerole, fear of the withdrawals etc. I am such a coward when it comes to the thought of RLS symptoms going into overdrive. I honestly think that I can withstand serious pain more easily that the creepy crawlies.

My GP is quite likely to support me in anything I want to try, just how willing he would be to provide the very serious opiods, I'm not sure but there is no doubt that he is very willing to discuss and do what he can. At present he prescribes daily Tramadol 50mg SR x 2. Also Cocodamol x 4 @ 30/500, Plus the ropinerole. (Apart from other meds for other conditions) He is willing, or has been previously, to work with me using the Foundation documentation and Dr B's book. It's quite a while since I've actually seen him specifically regarding RLS and I do feel that if I had sleep I'd be managing ok.

These last few months I've had about 4 hours fragmented sleep each night - going to start my sleep diary again. To have it on paper if/when I go back to him. He is quite cooperative, I honestly don't think any other GP would be more understanding and of course we can't visit another doctor here in the UK just as easily as in the US.

You are adding trazadone to your zopiclone - may I ask what your dosages are.

Yep - I will do my sleep diary and then see Dr regarding the zopiclone and trazadone, discuss and request a cocktail sleeping aid.
It's possible that I had a week of trazadone when my clonazepam was unavailable but can't recall how beneficial it was - which pretty much speaks for itself. Sometimes it seems that the sleeping aids are so ineffective that I might as well just not take any. Now there's a thought ??

For the moment I will create a document regarding all previously prescribed sleep treatment, sleep pattern, the side effect of insomnia with ropinerole etc. all laid out without anything irrelevant. Keep him and myself focused on the sleep. That's a plan.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Re: reflections on a bad trip to the RLS specialist

Postby legsbestill » Sun Sep 24, 2017 11:00 pm

PolarBear, would you consider asking your GP to prescribe Naltrexone as Aipulu suggests in a different thread? Apparently (I'm sure you saw this so forgive the repetition), Aipulu was able to lower his/her dopamine agonist dose substantially almost immediately after starting Naltrexone. As it worked so quickly, you would not need to take it long to know whether it was any use for you.

pamhb
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Re: reflections on a bad trip to the RLS specialist

Postby pamhb » Mon Sep 25, 2017 3:34 am

Polar Bear, I feel your pain. Your description of your nights is exactly how I spent mine, for most of this summer. By the end of August, I was at wit's end, was sinking further into depression, and wondering how I was going to manage living out the rest of my life. My happy result, as people will know from my other posts, was in seeing an RLS specialist who did understand my problem and who made the necessary recommendations to adjust my meds. I now get about 6.5 hours of sleep in a 10 - 11 hour period of time, and I'll be up about 4-5 times. While I'd rather be up fewer times, the additional hours of sleep make life bearable again.

I'm taking CBD oil (a cannabis derivative, with no hallucinogenic or other nasty side effects), which makes me incredibly sleepy at night. (I believe CBD oil was recently legalized in N. Ireland). So even though I'm up at night stretching and walking, I fall back to sleep quite quickly once my symptoms resolve themselves. I've also started using a new app for my Iphone, CBT-i Coach, to monitor my sleep patterns and to help improve them. Finally, I'm working hard at identifying my food triggers, as it is becoming increasingly apparent that when I eat a trigger food, it doesn't matter how well medicated I am, I will have symptoms that wake me up and keep me up for an ungodly length of time.

I have set myself a goal of getting 6.5 hours of sleep in a 9-hour sleep period. I'm now on a mission to get all of my various health care professionals on board, so that we can collectively work towards this goal, and a happier me...

P.S. I also found that gabapentin, when I was taking it, made me quite sleepy.

badnights
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Re: reflections on a bad trip to the RLS specialist

Postby badnights » Mon Sep 25, 2017 4:42 am

Betty

Something to think about is that after withdrawal from ropinirole and re-setting, you will probably be taking in less medications than before. In fact, I wouldn't be surprised if your total opioid dose went down.

Another thing to think about - think carefully about the unknown things all this medication is doing to your body, first, though - but if you still fear the WED that much (and I don't blame you) then what about trying Naltrexone? I see legsbe has already suggested this. Search Aipulu or Naltrexone? to recall the discussions - maybe you can be the next guinea pig!

I'm taking 25 mg trazadone with 3.25 mg zopicline. I was prescribed 50 mg traz but it was way too powerful for me and lasted into the next day. I also was taking 7.5 mg zop until a few months ago. Oh - and pamhb's post reminded me, I take 75 mg Lyrica too. I started that in an attempt to get better sleep, because it was so fractured with just the zopicline, but I can't be sure any more if it actually helps. I think it did at first.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: reflections on a bad trip to the RLS specialist

Postby Polar Bear » Mon Sep 25, 2017 5:57 pm

I typed a comprehensive (and took ages) reply to recent posts and somehow it has been timed out and disappeared.
You will be glad to know that this is likely to be much shorter :)

legs - Upon a little research I found that Naltrexone should not be taken until one has been opioid free for 7 - 10 days. It would be very traumatic with 24/7 RLS to be opioid free for 10 days. I wonder how Naltrexone works, is it a very different type of pain relief? It blocks opioid effects including pain relief. A little research indicated that a low dose may be possible while reducing opioids. I'm wondering how relief is gained while coming off opioids, probably augmented, and with only a very low dose Naltrexone. Most information showed it to be certainly effective for fibromyalgia, MS.
I will re-read the information.

pamhb - I've done a search on CBD Oil here in N.I. and yes it does appear to be available at several outlets. Reviews have suggested that it is not of much benefit compared to the 'real thing'. However I'm up for it and will make a wee trip in the next day or so. I take on board that it made you incredibly sleepy at night, does it come in varying strengths ??
May I ask you how you actually take your CBD Oil.
Well done on seeing an RLS Specialist of merit.
Unfortunately gabapentin didn't help my sleep.

badnights - Thank you for the information regarding your dosages, I have tried most things but will suggest to my GP that we try a 'cocktail'. It's about the only way left to go. (Tho I shall try the CBD Oil also). See my comments above to legs about the Naltrexone.
Yes, I know..... my opioids relect my ropinerole dose. Having the right opportunity is another factor - Childcare plays quite a part of my life weveral times weekly, and to be honest, I think to come off ropinerole I'd need a deserted island, leave me alone, let me curl up in whatever misery I have and I'll see you when it's all over.

At present, I do feel that I'm managing fairly ok with regard to RLS Symptoms, if only I had sleep.

Plan is:
See GP regarding sleep meds cocktail.
See about CBD Oil.
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

pamhb
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Re: reflections on a bad trip to the RLS specialist

Postby pamhb » Tue Sep 26, 2017 12:11 am

Regarding the CBD oil: I use a product which is CBD mixed with an edible oil. 1 ml of the product contains 23.7 mg of CBD and a trace amount of THC. The equivalency factor is stated to be that 5 ml of the CBD oil = 1 g of dried cannabis. You start the product at a low dose and titrate up until you have the desired effect. I started at .25 ml per night, taking .125 ml at 8:00 pm and .125 ml at 10:00 pm (just before bed). The product takes 2 hours before it becomes effective, and then lasts for 5 to 6 hours. I mix it in with a small amount of juice and toss it back like a shot. I currently take .5 ml + .5 ml, because I'm interested in seeing if it will control or minimize some of my residual RLS symptoms as well. I find that by the time the first dose kicks in around 9:30 pm, I can hardly keep my eyes open, and I fall asleep quite quickly.

I've also started experimenting by mixing in some THC oil from indica plants, but the jury's still out on it for me. While THC from indica plants will make you more sleepy that THC from salvia plants, you're still likely to be more awake that CBD by itself. I also felt a strange popping sensation in my muscles the first time I tried it, and had greater RLS symptoms that night. I intend to try again on a night where I have nothing on the next day, should I have the same experience.

CBD is also believed to have a number of other benefits, such as muscle relaxation, anti-spasm, lowering of blood pressure, reduction of anxiety and depression, and pain relief. It's a good place for most RLS users to start, because it is non-psychoactive. I have also met RLS patients who suffer from milder forms of RLS, for whom CBD works all by itself. I think it's likely that those of us with severe refractory RLS experience fewer benefits, simply because our symptoms require a relatively high dose of pharmaceutical agents in order for us to notice a difference.

Like all such drugs, be sure to check with your doctor for drug interactions before taking. Good luck!

legsbestill
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Re: reflections on a bad trip to the RLS specialist

Postby legsbestill » Tue Sep 26, 2017 1:52 am

Betty, I don't know much about naltrexone and how it works and was really just passing on what I read of Aipulu's experience. However, Naltrexone at higher doses (as Aipulu recommends) - ie not LDN - is typically used to help addicts to reduce or quit opioid drugs (as well as other addictions). The research I did suggested that it was not incompatible with continuing to take opioids from a physiological point of view but I plan to ask my GP and also my Pharmacist about this as I am not a medical expert - just a patient desperate for some degree of normality in my life.

Just to give you the heads up, Cbd oil seems to be phenomenally expensive on this island. Particularly at the higher strengths which I suspect you might need to achieve any sort of relief. I took it for a while - the oil I got was taken sub-lingually. While I did feel better in a nebulous sort of way when taking it, I eventually stopped as it failed the cost benefit analysis. I would say it's definitely worth trying however as I've read of a number of people getting relief using it - we are all different (henceforth 'waad' in my posts).

badnights
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Re: reflections on a bad trip to the RLS specialist

Postby badnights » Tue Sep 26, 2017 3:52 am

oops, can the Naltrexone idea. I knew you were on opioids, I just wasn't thinking. Sorry! I don't see how it can avoid lessening the effect of the opioids, so you would probably have to take more of them to stay even. That said, legsbe I am interested in whatever you find out about this!

Betty you have things to juggle and have to manage it all in a way that works for you. I hope I wasn't sounding like I was on your case. If it's not the right time to detox - yes, a deserted island or equivalent is a requirement - and if you can deal with the sleep somehow, then that's the thing to do.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: reflections on a bad trip to the RLS specialist

Postby Polar Bear » Tue Sep 26, 2017 1:14 pm

pamhb - Thank you for your advices on how you use the CBD Oil. Out of interest why are you addingTHC ?

legsbestill - I haven't costed the oil yet. Last night I sent a message to one of the outlets, it was closed, and they replied suggesting I telephone them today to discuss as they are sure they could help me. I will ring them shortly. So, you didn't feel that the benefit of the oil was worth the cost?

badnights - I def didn't feel like you were 'on my case''.... your opinions will always be welcome. Yes, Sleep is my first goal.
Betty
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