More help please

[wairoa36]

I have posted here several times and have had wonderful help.

Now I need more please.

I have been trying to get back to more sleep , having gone through hell getting off the dopamine agonists. It is over 3 months since I began withdrawal, which took 6 weeks to be totally clear. Currently I am on Gabapentin 600 mg in the evening and Targin 25 mg at the same time.

I am still getting very little sleep, perhaps 3 to 4 hours sleep with long periods up on my feet , trying to stop the kicking and painful legs. These typical RLS symptoms vary in times but can start early in the afternoon, and then wake me at night out of sleep, and again in the morning , so that I have to get up and start my day perhaps at 6 am or earlier

I have tried taking the pills at varying times but nothing helps.And very occasionally for no apparent reason, I have a decent night’s sleep.

I live in Australia, and I am 83.

I care for my Great grand daughter who is 4 years old, so need to be on my toes. Soon though , in 3 weeks, I will be off for the summer break here , and will fly to Italy for 6 weeks.

I would appreciate help from fellow sufferers here on the forum. I have a GP who is helpful but has no experience or education in RLS.

I am soooo tempted to pop some pramipexole and sleep the night away..........

Picol

[Hidden]

Hi there, don't be tempted by the Pramipexole. There must have been a reason for you coming off it. I'm sure you don't want to go back to that having gone through the hell of withdrawal.

Your dose of Gabapentin is possibly too low. An effective dose is usually at least 900 mg and could be more if necessary. If 900mg doesn't do it, then perhaps you could switch to Pregabalin which is more easily and consistently absorbed.

Sorry I know very little about Targin. 25mg seems quite high, did you mean 2.5 mg?

[Tamaroy]

I too am a Great grandmother.

Please try not to go backwards to Pramipexole, it helped me all Summer long then I had disturbing augmentation after 6 mths, have weaned off, 3 wks of hell.

Now on Gabapentin, it has taken 3 and a 1/2 wks to work to any effect, I take Iron, Ferrous Sulphate during the day and 1 tab of Gaba at 7 pm, Sanatogen Tonic wine about 9 pm, take 2 x Gaba at 9.30, bed 10/10.30. I take half the dose of Gaba than you per day, am asleep by 11 and wake between 6.30 and 7.00, which is great, no headaches from being drugged overnight.

I hope this helps you in some way. Have a lovely time in Italy.

[Hidden]

Gabapentin has been under review with a large number of side effects in the UK. These include a large number of muscular -skeletal disorders which may be part of restless leg syndrome. Yellow Card Scheme gives information Uk government on tab drug profile analysis. It gives an annual review of each side effect and body organ affected.

Gabapentin side effects are minimised in drugs.com in their alphabetical list.

Targinact has an opioid ingredient for severe pain meant to help restless legs.

Naxalone is another opioid but an antagonist. It has the side effect of insomnia.

There is an article on Oxycodone WithNaxalone Controlled Release Tablets (Targin0

nps.org.au/radar/articles/o...

Guess it may be the Targin which s keeping you awake, so may be you should go back to the doctor to revise your prescription. Advice about iron is known to help people with deficiency as iron helps the oxygen reach the blood, to help muscle function. Vitamin D and K are also needed to balance calcium levels and muscle function. Some people find. magnesium supplements helpful for muscle function restless legs and cramps. Other people use foods such as bananas, high in magnesium and potassium to help. Drugs can reduce vitamin levels in the body so taking supplements or eating foods high in nutrients may help.

Iron and vitamins c may help iron absorption. If you have not had a range of vitamin and mineral tests, you might find it helpful as B12 D and iron are strong suspects with muscle dysfunction. Hope your doctor helps you out,

[Lapsedrunner in reply to Hidden]

Do you have RLS hawii60?

[Hidden in reply to Lapsedrunner]

I have had it in connection with diabetes and IBS and a diuretic which is known to have a side effect with muscles. I have to be wary of drugs due to toxic effects, and allergy side effects with the liver. I would not like to have problems with augmentation, and trying to get off a drug. Every one is different so guess the drugs may help some, Some drugs encourage uric acid, and which affects the kidneys. I have to watch purines in the diet or |I gan get pain in my big toes and joint stiffness elsewhere. Magnesium and potassium help me, as I am on a potassium sparing drug.

[wairoa36]

Thanks to all who have given me help on this site.

To answer some questions from you, I do take Targin 25 mg at bedtime . It is basically oxycodone with an added something to reduce constipation, so not a high dose.

It may be contributing to sleeplessness according to one of you so I will check it out.

I do not take any iron as I have a ferritin level of more than 800 mcg per litre and still climbing.

I have been diagnosed with hemotomachrosis but no one wants to do anything about it and feel it has no effect on my RLS.

I also read here that it is possible to take Sifrol on an occasional basis.

I ask about this as I am planning several 11 hour flights abroad in 2 weeks.

I have recently withdrawn from DAs.

I have tried my current dose of Gabapentin 600 mg recently on a long train trip with no relief on my RLS.

I know from Manerva that the dose must go up to be therapeutic but till that gets higher and effective hopefully, can I use some sifrol to survive the flight?

Thanks for so much help,

Picol/wairoa36

[Hidden]

In your diagnosis of blood problems, according to NHS Uk it is age related. Iron levels increase. Sometimes the iron overload affects the pancreas, making insulin production hard, and high blood sugar with symptoms of diabetes might be present.

If you have not had any tests for over 6 months or no record of your blood sugar levels it might help. Diabetes is linked to joint ,fatigue, and similar symptoms to the blood disorder,.

Yous ound so busy, you haven't any time to stop. If you have any swelling round the legs or elsewhere advice is to go back to your doctor for checks for heart and kidney. Heart problems may be helped with medicines. I am on diuretics which prevent a build up of fluid, and have been fine on them.

Dietary advice on how to lower iron levels with food can be found

on How to Lower Iron Levels With Food:|Livestrong.com

livestrong.com/article/arti... to-lower-iron-levels-withfood

Cutting out iron rich foods red meat beef liver dark ,eat poultry .

more research can be found -

dailymedicaldiscoveries.com... -to-lower-iron-levels-in-the-blood

Other known methods of reducing iron and ferrous metals is to take very large does of

vitamin c in a supplement form. This research comes from Linus Pauling. who has written many papers on vitamin function . Data on chelation may be found from Oregon State university at Linus Pauling Institute which gives the public information food beverages and dietary aspects. No need to reply. Recommendations are to take 2000mcg a day of vitamin c. Drinking orange juice will not suffice it has to be a supplement tablet taken about three times a day, as vitamin c is lost after during the day and needs replenishing.

[Hidden]

PS. To check for foods with added iron, you can check cereal boxes and labels for foods fortified with iron.

myfooddata.com gives the high or low values of foods in your diet for minerals including iron and each vitamin. It shows foods you buy in supermarkets as well. With an overload of iron, vitamin D levels may be affected.

You should be referred to a gastroenterologist specialist, and a nutrition expert to help

you with a diet sheet, to lower your iron, and to help the digestive organs which are being

loaded with toxic iron. There are articles on chelation of metals such as mercury aluminium.

There are drugs for chelation of iron . DMSA chelation uses Chemet as the main chelating agent. L Glycine is aa none essential amino acid. Vitamin C reduces toxicity by eliminating

multiple toxins including heavy metals. The page for information was through Bing server rather than google under the heading of Chelation Of Iron.

Think your doctor has been remiss in not referring you for haemochromatosis. This is may be the root of your restless legs. Muscles need vitamin D and K and calcium for normal muscle function, so iron overload may be the root of your problem?

[Coeso]

Hi, sorry to hear your sleep pooblems. I know this sounds ridiculous but after suffering from rls for 30 or so years, I started on mirapexin 15 years avo. It worked perfectly til I augmented. I came off it and tried various meds. Nothing worked as well as mirapexin. After going through hell I discovered that if my legs start I have an espresso coffee and it seems to immeduately ease the horrible urge. It doesnt stop me from falling back to sleep. I now alternate mirapexin i.e I take 0.18mg at night and when I feel it is starting to augment, I take a tramadol at night for about 6 days. I sometimes take over the counter codeine and paracetamol to help and my rls is liveable. Try the coffee. It really helps me