I have severe augmentation from taking sifrol for 5 years.
Told my Neurologist I needed to wean off it(as many in this group recommend) and asked for a weak opioid to help me.
He refused to give it and would only give me Sifrol CR….won’t that make my condition worse long term???
I begged him to prescribe some stronger medication to help me sleep(currently take 10mg Temazepam 2-3 nights a week but it is not very effective as I still wake 3-4 times
He told me I needed to see a Psychiatrist-for my anxiety! Didn’t understand at all that my anxiety is caused from chronic lack of sleep and severe augmentation !!!!!
Do I need to find another Neurologist?
Anyone out there finding Sifrol CR helps?
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Slipslopslap
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As you realise sifrol CR is still sifrol and won't help your augmentation.
You DO need another neurologist, or at least another doctor. Certainly one that's not abusive.
If you have augmentation that are three main things you should do.
1) iron therapy
2) aggravating factors
3) switch to an alpha 2 delta ligand.
Iron deficiency is the main cause of RLS. if you can, have blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
If all of these are normal, particularly TSAT less than 45% and ferritin is less than 75, then start taking an oral iron supplement.
If you can, get ferrous bisglycinate (gentle iron) a non- prescription iron.
Take it in the evening 1 hour before or two hours after eating, taking magnesium or any antacid.
Take it with a glass of orange or a vitamin C tablet.
Only take it once every TWO days not daily.
This isn't going to have any imnediate effect,but will help, long term.
Avoid short term "triggers" which can make RLS worse, i.e. alcohol, nicotine, sugar and caffeine. These make RLS worse.
If you're taking any of the following, see if you can stop them or switch to an alternative.
Any antidepressant.
Anything with a sedating antihistamine in it, allergy medicine, cough medicine or sleeping aid.
Proton pump or H2 inhibitor antacids.
Beta blockers.
Diet can affect RLS long term by causing inflammation, a mediating factor in RLS. I suggest you tead up about this at some time.
The main thing you need to do is wean off the sifrol. You need the immediate release version, not the CR version and you need the 0.125mg pramipexole dihydrochloride tablets = 0.088mg pramipexole.
To minimise withdrawal effects reduce you daily dose by a half a tabket (=0.044mg) every two weeks. The smaller the amount you reduce by, the less severe withdrawals will be. Withdrawals are temporary worsening of symptoms, sleeplessness and possibly low mood. Withdrawals may last at least two weeks.
If you can, get a prescription for either pregabalin or gabapentin. These have a much lower risk of augmentation. They can also ease anxiety and help sleep.
You can start taking one of these at any time but at least 4 weeks before stopping sifrol. They can take that long to start working.
Unfortunately they may not help much with withdrawals.
Their starting doses are 300mg for gabapentin and 75mg for pregabalin. This normally needs to be built up until they work. It's difficult to tell whilst weaning off sifrol, so I suggest build up to the dose that's known to be the minimum to be effective. That's 900mg for gabapentin and 150mg pregabalin.
These drugs are now, internationally, the first medicine recommended for RLS.
See if you can get a prescription for one of these.
Anxiety is a problem with RLS and can be caused by it. It also makes RLS worse! Read up on what you can do for yourself to relieve anxiety.
It's not advisable to take a drug for anxiety, they're usually an antidepressant which makes RLS worse.
A benzodiazepine can help a little with sleep, the usual one for RLS is clonazepam, rather than temazepam.
I hope you can find a good doctor who's willing to listen to you and if they're not very knowledgeable about RLS are wiling to look it up. I will add a link later which can help them.
It doesn't necessarily have to be a neurologist.
If you notice you are having sleep difficulties e,g. Loud snoring, you may have obstructive sleep apnoea, which many people with RLS do have. If you suspect this is the case, see a sleep specialist, not a neurologist.
Many doctors, even neurologists are quite ignorant about RLS, that's neither unusual or a major problem.
However it is a problem when they're not willing to inform themselves about it or if they don't tecognise your legal and ethical rights. These are, I presume, more or the less the same as here in the UK.
This is a link to the latest recommendations for the management of RLS. Reas it all, but especially the section on augmentation.
Send the link to the neurologist or download the paper yourself and send it. Also, the NICE guideline are quite up to date, as far as I understood (I am outside the UK and have no direct access). Your neurologist has clearly given you and outdate reply.
Don't despair, fight, but fight nicely and remain civil while standing your ground.
Please send a message to Shumbah. She's also in Australia and may know a knowledgeable doctor who can treat you correctly. Your doctor is decades behind on RLS knowledge and yes, you should find a new one asap.Sifrol CR will just prolong your agony.
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