Hello to all, I am looking for advice, support and somewhere to whine.
I wrote before as I have got off a daily dose of SR pramipexole .75 mg and 1 tab sinemet 100/25. I took 6 weeks to do it . My dr wanted me to do it more quickly but I did not, having struggled through the whole misery once before.
Anyway , now I have been off the dopamine agonists for 3 weeks. It is pure hell., day and night.
My dr is really trying to help me but I know he is looking it all up on the web as I sit there. I offered my book by Dr Buchfuhrer and he just handed it back to me,.
Anyway as of 4 days ago , I am on 1 Lyrica, which I take about 6 pm and then he gave me Codeine 30 mg 1 or 2 tabs at bedtime.
The 1 tab did nothing so I have just taken 2 for tonight. I hope for a marginally better night than I have been having. My legs are painful and in frequent spasm and it is impossible to lie down, or even sit down.
He wants me to see a neurologist but I have seen the only one near and I refuse to see him as he put me back on the DA and was patronising and said there there, you wouldn’t want to be addicted on the other drugs available would you?
And pushed me out of his office.
Your thoughts on this would be appreciated , and perhaps a handful of OxyContin if you have some to spare? Just kidding.
I currently live in the interior of Australia. In general I find them here quite conservative, and not too advanced in their thinking, in imedications specifically.
In Canada where I hail from , it is all quite liberated, and I may need to go back to get help. If I survive this.
You are all so wonderful on this forum and I am grateful for your help
Picol
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picol
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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.
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.
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 .
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?
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 .
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!
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
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!)
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Trying another dopamine agonist (yeah, I know....🙁)
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