I have dopamine issues Willis ekobom disease

[Jasongreg]

I have rls had it forever its nothing new also have aspergers syndrome don't know if theres a connection, been taking ropinirole for a while starting to make me feel poorly changing to pramipexole they said change straight away but I cant the pramipexole is so low of dose cant cope with the legs , so I'm using up the ropinirole while I try get a higher dose obviously I have dopamine deficiency, just brought some multi vitamins my research shows these may help increase natural dopamine, If they work hopefully get off the poison from doctors , also there is barely any muscle in my legs seem to be wasting away wtf ?

[Hidden]

Don't know about muscle wearing away - I'd imagine RLS could help retain muscle since you are more apt to move.

In the search bar at the top right of the page look up gentle iron as it has been found to help, not sure that a multivitamin would do anything unless maybe it included iron.

[Jasongreg in reply to Hidden]

Seems I cant include a photo , its minerals to , I have poor leg muscles when I feel them with my hands very soft but still very strong

[Hidden]

Hello Jasongreg

This forum can help you by giving you information.

Please will you write what country you live in.

The information will be better if you write answers to these questions

What dose of Ropinirole were you on?

-

What dose of Pramipexole have you been prescribed?

You said ropinirole made you poorly. Can you describe how it made you poorly?

You are right to call it Willis Eckbom Disease, but on this site most people call it RLS ( an abbreviation of Restless Legs Syndrome). It's the same thing.

Do you get RLS symptoms ONLY in your legs or do you get them in other places in your body? Where?

Do your RLS symptoms only happen at night or do they happen earlier? How early?

Your answers to these questions may indicate that you have been prescribed the wrong medicines.

Multivitamins will NOT raise your dopamine levels.

There are two vitamins which may possibly help. These are vitamin B12 and vitamin D. They will not stop your symptoms on their own.

The main thing that might help you is iron.

This is a bit complicated , so if you answer the questions first, then I can tell you about the iron.

I understand you suffer Aspergers and I believe you may sometimes interpret things very literally. I hope I am writing things clearly enough for you.

I also suffer Aspergers, but we are all different. I know what it's like for me, but I don't know what it's like for you.

Please reply and you will get help.

[Jasongreg in reply to Hidden]

Ok Minerva I will attempt to answer all your questions ..

I live in u.k .

I am taking 3mg of ropinirole

I have been prescribed 0.088mg of pramipexole.

Ropinirole makes me dizzy full body spasms while in bed asleep waking up by feelings of falling feelings light headed , spinning sensation trying to get up but feeling like on a gravity wheel , seeing lights appear like glitches in reality, abdomal pains agitation insomnia, I fall asleep for a short time then when I'm up it's a very long night , if I dont take them legs are worse than ever , on rare occasions I have the same symptoms in my arms .

Every time I had my iron tested I have plenty according to the tests , it's not just multi vitamins it has minerals loads of them including metals like iron and copper , my rls symptoms can happen any time , but mostly when chilling out . Mostly at night

[Jasongreg in reply to Hidden]

I started taking the multi vitamins only yesterday I forgot to say

[DicCarlson in reply to Jasongreg]

I would recommend this book - total diet and supplement therapies. It would be best to find a practitioner to access your condition. "Why My Brain Isn't Working" by Datis Kharrazian, lots of reviews from the UK... amazon.com/Isnt-Brain-Worki...

[Hidden in reply to Jasongreg]

Hello again

Firstly the multivitamins. There's no harm in taking multivitamins, but don't expect them to have any effect on your RLS.

Vitamins aren't going to help with RLS unless you have a deficiency in any of them.

The only really relevant ones are vitamin B12 and vitamin D and taking these will only have any effect on your RLS if you have a deficiency in them. If you have no deficiency then they will not help.

The main minerals that are associated with RLS are iron, magnesium and potassium.

Iron is the main mineral affecting RLS.

RLS is partly caused by "Brain Iron Deficiency" (abbreviated to BID). This means not enough iron in the brain.

BID can occur even though the body overall does have enough iron. A "normal" blood test for iron i.e. haemoglobin will NOT detect BID.

BID is detected by having a blood test for "ferritin". This blood test measures the amount of the substance, ferritin, in micrograms per litre (abbreviated to mcg/L).

If you have a ferritin test and you are told the result is "normal". This is no good for someone with RLS. You need to know the number i.e. how many mcg/L.

If your ferritin is below 50 mcg/L then it is too low and you need to increase it.

In fact 50% of people find their RLS improves if they can increase it to over 100 mcg/L

It isn't easy to raise your ferritin, but you can try to do it by taking iron tablets or capsules. There are 3 rules to this.

1 Use "Gentle" iron. You can get these in Holland and Barratt or a supermarket.

These will cause less problems with your stomach and bowel.

2 Do NOT take a capsule every day, take one every TWO days. You can try taking two capsules every two days, but if they upset you, only take one.

This will help your body absorb the iron better.

3 Take the capsules when your stomach is empty and drink a glass of orange at the same time.

This will help your body absorb the iron better.

Secondly, there are many things that can make RLS worse. Here is a list of things which people with RLS find makes their RLS worse. If you do take any of these things then it your RLS may improve if you stop taking them.

- SSRI and tricyclic antidepressants. If you do take an anitidepressant, write its name and then I can tell if it's an SSRI or tricyclic one.

- Antihistamines, for example in cough medicine.

- Some medicines for indigestion or heartburn

- Some medicnes you may use for nausea or sickness

- Alcohol

- Refined sugar

There are others, if there is anything else you take let me know what it is.

Thirdly, it sounds like the ropinirole doesn't suit you at all. In that case it may be that pramipexole doesn't suit you either.

Both these medicines are from a group of medicines known as "dopamine agonists", (abbreviated to DA).

You must NOT stop taking one of these suddenly and completely. This can cause SERIOUS withdrawal effects

You CAN stop taking one DA if you start taking anotherDA immediately and ONLY then. This is what your doctor has done, stopped the ropinirole and stared the pramipexole.

However, you were taking a fairly HIGH dose of ropinirole and he doctor has put you on a LOW dose of pramipexole.

This won't work! In fact you may be experiencing withdrawal effects!!!!!!

If you continue taking the pramipexole AND take your ropinirole you may be getting TOO MUCH of the DA medicine in total. This is not a good idea.

Lastly, it may be that DA medicines aren't going to suit you and as well as that, these medicines have some quite nasty long term effects.

These are called

A - Loss of efficacy

B - Augmentation

C - Impulse Control Disorder

C doesn't happen to many people who take a DA

A and B do happen to many people.

Augmentation means that instead of making the RLS symptoms better, the medicine starts to make it worse. Your RLS does sound severe, with augmentation it will be even worse.

There are 2 things which affect whether you will have augmentation or not

1 The higher the dose of the DA, the greater the risk of augmentation

2 Some DAs are more likely to cause augmentation than others. Pramipexole is the worst.

There are other medicines that can be used for RLS. Your doctor can prescribe ONE of these., either Gabapentin or Pregabalin

They are recommended for RLS and are known to be effective.

They do not cause augmentation.

I am not a doctor and I can't tell you what medicines to take but I have taken pramipexole in the past, I did have augmentation. I stopped taking pramipexole and started taking gabapentin. It works for me.

My suggestion is that you go back to your doctor and ask your doctor to prescribe you gabapentin.

Switching from ropinirole or pramipexole to gabapentin is not easy. If your doctor agrees to giving you gabapentin then I suggest the following steps

1 Start taking the gabapentin, but carry on taking pramipexole.

2 The "starting dose " for gabapentin is 300mg

3 You can then build up the dose of gabapentin by an extra 100mg each day

day 1 - 300mg

day 2 - 400mg

day 3 - 500mg

and so on. The dose of gabapentin known to work for RLS is at least 900mg

4 After taking gabapentin for 3 to 4 weeks

5 Start reducing the pramipexole

week 1 - take 88mcg (= 0.088mg)

week 2 - cut the 88mcg tablet in 4 pieces and take 3 of them = 66mcg

week 3 - cut the tablet in 4 pieces and take 2 of them = 44mcg

week 4 - cut the tablet in 4 pieces and take 1 of them = 22mcg

weel 5 - stop taking the prampexole.

6 You could also ask your doctor for a ferritn test and tests for vitamin B12, vitamin D and potassium.

I realise this is quite complicated and if anything isn' t clear ask me again about it.

the medicines are up to the doctor.

You can get more information about the treatment of RLS in the UK by

clicking on this link

cks.nice.org.uk/cks.nice.or... › restless-legs-syndrome

then click on the link that says "scenario management"

[Jasongreg in reply to Hidden]

Wow this is a massive stament , I realise you have taken alot of time out and put thought into this just for me thankyou alot , I have had gabapentin it was the first medication I was put on for rls it didn't work at all , I'm still taking the ropinirole just using it up waiting, I have requested the pramipexole be increased and have had permission I have only had it twice saving them , mixing them was a very bad idea , I will read your post again and try take in more tomorrow thanks again manerva

[Hidden in reply to Jasongreg]

If you choose to continue on the pramipexole do read up about augmentation. It might happen in months but hopefully may take years.

I suggest you keep the dose as low as possible. After you've found an effective dose, don't be tempted to increase it more than once after that.

The official maximum.is 540 mcg, but many now think it should be no more than 360mcg or even less. This is because of augmentation.

-

Be prepared.

-

As regards gabapentin, I read quite a few people say they've tried it and it didn't work.

I wonder about this.

It isn't like dopamine agonists. It doesn't work immediately, it may take weeks. it also takes time to build up to an effective dose.

I wonder if people say it didn't work when they only tried a low dose for a short time, then given up prematurely. Something to bear in mind