Joolsg4 years ago

Hang in there Picol. Lyrica takes 3 weeks to become effective and when you say 1 Lyrica- what dose are you on? You can take up to 300mg for RLS but it’s best to titrate up slowly ( say 25/50 mg every 3/4 days). Also, you’re still in withdrawal so the codeine will help.

picol in reply to Joolsg4 years ago

Thank you so much. There is hope then , perhaps.

I am on Lyrica 75 mgs and take it about 6 pm. But it does not stop the onset of rls about that time.

Then I take the Codeine 60 mgs , starting last pm , about 8 pm but by then the legs are excruciating, and the

codeine does nothing. I had 3 nights on Codeine 30 mg but it did not help so last night went to the Max ordered of 60

mg with no improvement.

It does not even make me drowsy and so still I have to stand and walk all night.

I am still in withdrawal even after 3 weeks free of DA? So how much longer before I can hope for any sleep?

Picol

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Graham3196 in reply to picol4 years ago

I will send a list of things that have helped others by private message

Graham

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wairoa36 in reply to Graham31964 years ago

Thank you Graham! Where do I find that?

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Graham3196 in reply to wairoa364 years ago

Sorry for the slow response. I am traveling at the moment in Korea but I see my emails.

Click the cursor on your icon - the smiling face in a circle next to your name

This opens your profile

In the top left hand corner of your profile page are boxes "home" , "My Hub" , "Chat" and one more

Click on chat and your messages will come up

Let me know if it doesnt work and I will get my instructions right.

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wairoa36 in reply to Graham31963 years ago

I could not find it Graham

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Joolsg in reply to picol4 years ago

Withdrawal can take months. It took me about 3 months to get through the worst of withdrawal and find the right combination of meds.

Make sure you’re not taking any meds that make RLS worse, like anti depressants, anti histamines, Benadryl and raise serum ferritin above 100 and serum iron above 60.

Magnesium affects Lyrica absorption so take at least 3 hours before or after.

The Lyrica dose is on the low side and as I mentioned, takes 3 weeks to be fully effective.

It should start to improve soon.

Stay strong.

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Shumbah in reply to picol4 years ago

When all else failed I found a Natropath in Queensland who prescribed NabaBis Cannabis oil spray . I add some lemon essential oil .

This is legal now for pain etc and becoming easier to get in Australia.

Unfortunately my poor Dr has just had his licence suspended something to do with a lime disease test . However I am sure my pharmacist will know another Dr .

Cannabis helps in all natural forms.

I am blessed to have a doctor prescribe OxyContin I’m on 15 or 20 mg which ever I wish . I take at 8 pm with a stillnox .

However a few days a week I am in terrible pain from 1 pm then I use the the Cannabis some nights I only use Cannabis , The doctor I visited at the John Hopkins institute said edibles are better for RSL , I have tried this in Colorado etc and yes it’s lasts longer at night .

I travel abroad a lot and could not travel without the OxyContin, I am careful which countries I enter .

I hope this helps

🙂

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wairoa36 in reply to Shumbah4 years ago

Thank you Shumbah!

So is the Nababis canabis oil spray to spray on your legs?

I have some CBS oil from Japan but found it not much use.

I travel too and am very anxious that when I go to Italy this December, I will not have Pramipexole and Sinemet to get me through endless long flights with no trouble.

So far I have not got oxycontin, only Codeine 30 -60 mg at bedtime.

I thought if one took a note from the Dr that a narcotic was medically necessary, it wd be ok most places?

Glad I cancelled Iran for this trip too.

Picol

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Shumbah in reply to wairoa364 years ago

No NanaBis is oral spray on the inside of check

I find I have to take a lot more than recommend

I have just come back from Italy .

All our hand luggage was searched in AbuDhabi however I think they were looking for liquids

I was sweating let me tell you .

I phoned around Australia that was aware of a couple of days

I cancelled Bali after phoning the Indonesian embassy in Indonesia

The person I spoke to there told me even with my repeat script and doctors letter it depends on the OFFICER ON THE DAY . Not a chance I would take that risk .

I would not travel anywhere with Nanibis at this stage except Tasmania .

Are you flying business?

I cancelled 5 trips this year prior to the oxy

Shumba

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Annieapple4 years ago

Another tip is to take the codeine earlier BEFORE the pain becomes excruciating & then another dose 4 hours later. Once the pain ramps up it’s much harder to control it!

Hoochybaby4 years ago

Hi picol it’s difficult giving hard advice to a rls sufferer as we are all different animals my rls is currently under control but I take a .26mg day and a.75 mg pramipexole night and it’s working for me I know it’s a high dose but the research I’ve done says that pramipexole can be taken successfully long term. I hope you can get some relief from this awful disease

restlessstoz4 years ago

Hi Picol, I too am in Australia, down south in Tasmania and I too find it very hard to find treatment! My GP is really great though as he has seen me in full blown withdrawal/augmentation! I saw him again this morning for attempt 1,227 to find something to help. I see/saw, a neurologist from Victoria and he didn't know much- had never heard of augmentation on DAs! I don't think I'll go back to him though may need someone to prescribe the drugs I may need???

I can't add in terms of treatment except keep trying everything, but I do want to add my support and wishes that you find something to ease the suffering! I think we're all struggling to find our own way in this maze and at least we can know that help and support is out there in answer to our posts.

I don't know if you can change doctors where you are? I do understand about your doctor 'Googling' cures, mine did the same. At least he bothered to try to find some help and is still doing that. He does read the literature I give him albeit briefly, and is willing to try the things I suggest. Sadly none have worked so far.

In the absence of a doctor who knows more, I'm happy to throw in my lot with someone who's prepared to admit they don't know and who's trying to find a solution. Not like the neurologist who didn't even admit to being unaware of augmentation on DAs and I'd been augmenting for years without knowing. (Thank you Health Unlocked, otherwise I'd still be augmenting!)

Good luck Picol! I'm with you in spirit!

wairoa36 in reply to restlessstoz4 years ago

Thanks to you , Restlessstoz. for adding your voice.

This is a heaven-sent forum with so much collective knowledge.

Yes it seems to be extra difficult here on Australia to get the help we need.

I will persist at the moment with my current GP, as I feel he is really trying.

Not too open to my input though so far, no matter how diplomatic I try to be!

My hope is to get an effective dose of oxycodone , which seems to be a pretty good option.

I hope you will soon get the help you need and will be sleeping well .

As I wish to all with this wretched syndrome.

Picol

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RoDomHarr3 years ago

Hi Guys,

I'm currently withdrawing from an over the counter L-Dopa supplement: macuna puriens.

It started causing augmentation so I went cold turkey, and only then discovered that dopamine withdrawal is a nightmare.

My RLS symptoms are manageable, it's more the withdrawal effects. Crushing depression, fatigue, nervous system pain.

How long on average should I expect this to last?

Ronan

WideBody7 days ago

Augmentation and DAWS (Dopamine Agonist Withdrawal Syndrome) are real and was the darkest 3-4 months of my life.

Iron supplements can help during Augmentation

ncbi.nlm.nih.gov/pmc/articl...