hydrokinine

[silvia10]

In Holland they sometimes use hydrokinine/ inhibin for RLS. Anyoone tries this?

[LotteM]

Hi Sylvia, welcome!

Oh yes. And NO. My gp (huisarts) have this to me 5 years ago when I realised I had RLS because it went from mild and intermittent to severe and daily. As I had taken a bit of time to inform myself (rls-uk.org is good if your English is good enough, or otherwise the Ducth stichting-restless-legs.nl), I knew that hydroquinine/Inhibin had been used in the past, but also had been proven ineffective many, many years ago. Don't take it. It may help with cramps though.

Do inform yourself and go back to your gp. The first line of medication now is usually gabapentin or pregabalin, both anti-epilepsy medicines. Only if there are personal risks to you with these medicines, the first line of medicines is ropinirole or pramipexole ('Parkinson's' medicines). That group of medicines is called Dopamime Agonists (DA). If you start taking a DA, start with the lowest dose and find within a few days to weeks your minimum effective dose. And them STAY on that dose. Ot may be effective for many years. But it carries the severe risk of augmentation, which means that it worsens the symptoms. If the effective dose mo longer works, do NOT increase.

There are also non-pharmacological measures. Huge lists of things you can do when the RLS strikes all over this forum. Read and find. But the most important one is iron.

RLS appears to be associated with low brain iron. And people with may benefit from hogger than usual iron values. Do look for the info on iron on the websites to inform yourself. And then, before anything else, ask for a full iron blood panel. Iron saturation (part of the standard panel in NL) and especially ferritin (you have to request this one separately) are crucial. Ferritin below 75ng/l is in the mean of the normal range (15-200), but still far too low for people with RLS. You need to try to get your ferritin as high as possible. Taking oral iron may get it over 100. Only iron infusions can raise it higher. If your gp has done the blood panel and agrees to iron supplementation, it wil most likely be ironfumerate 3x daily. Don't do that. It will give you terrible constipation. It has been shown that taking one pill once every two days on an empty stomach (I recommend just before bed) raises your levels as quickly without the nasty side effect. Also, ironbisglycinate ( buy it yourself) is far easier to digest.

Do come back of you have more questions and specifically when you have the results of your bloodwork on iron. Here on the forum, amongst the many patients, we have a wealth of knowledge on RLS, far more than any gp. We can advise on what and how to discuss with your gp. Don't act without het/him as of course we are not doctors and don't know about your personal situation.

Keep in touch.

Of Dutch is easier, send me a personal message.

[silvia10 in reply to LotteM]

I pm-ed you.

[Hidden]

Hydrokinine is dutch for hydroquinine which is closely related to quinine which was an older remedy for RLS, but actually was more effective for cramps than for RLS.

It might help with your cramps.

The use of quinine has largely been stopped because of some of the complications it caused.

Reading this and your previous posts two things stand out

1) You have never described any symptom that would confirm that you have RLS, only cramps and possibly neuropathy. I wonder therefore if you have RLS at all.

2) If a doctor has diagnosed you as having RLS I wonder why they haven't advised on non-pharmacological treatment or prescribed a standard RLS medication.

It might be a good idea to compare your symptoms to the RLS diagnostic criteria. If your symptoms match ALL the criteria then it's probable you have RLS.

irlssg.org/diagnostic-criteria

If you're convinced that you do have RLS then it would be worthwhile discussing these criteria with your doctor along with the treatments that Lotte has outlined.

The criteria are used internationally.

[silvia10 in reply to Hidden]

Hi Manerva,

Good point. These are my symptoms, it started 6 months ago with feelings in the legs which i could describe as feeling numb spots, with turning around many times in bed it improved. Also it was painful. (This was after a time of 2 months stress)

I went to my GP and she told me because it was better when i moved around in bed it was restless legs.

Removing my new mattress which was too soft helped at that time so maybe it was a problem with bloodflow.

And also because i was relived it was not something with my veins, which she checked, i was happy it was only rls (little did i know) and my symptoms disappeared. (so definitely a stress/relief factor was included).

But 3 months ago it started again. After a lot of stress in the 3 months of corona time, when corona went more away in holland i got the feelings again,(i know in general many times all illnesses, symptoms, etc flare up after or in times of stress) Feelings of numbness, better with moving, but now also kind of electrical charges in the legs, feeling muscles pop a lot. Worse in bed, better in daytime. Sleeping badly.(always been a bad sleeper but now worse)

But then i realized i always, for years, was moving my toes a lot at night, i always had to tuck them very tightly to my bedcovers to get them to be more relaxed but anyway there was an insistent urge to move them.

Same with my hands, i always had to put them under my cushions to keep them comfortable otherwise they would move to much or feel uncomfortable.

i started taping in my toes to keep them quiet and that gave some relief for a while. Still am doing that every night.

My mother also mentioned that she couldn't keep her legs still one time when we were watching tv. But as a child i didn't think much of it. This was the only time she mentioned it and i cannot ask her anymore if she had the same sensations.

My symptoms get much worse with stress i noticed(but probably everything gets worse with stress and are a bit better when i feel hopefull again.

At this time i have a lot of problems sleeping, electrical bolts through the legs, muscles twitching and many hypnotic jerks everytime i want to fall asleep. Tossing and turning a lot. Overactive bladder (but always had that one too). just tried sleeping for an hour but constant muscle twitches in arms, fingers and shoulders and legs that keep me awake.

I few nights i had constant muscle cramps in lower legs but that is more relaxed now.

GP gave me temazepam for sleep but im still bit scared to start it. And she referred me to neurologists, but also still scared to go because it makes it so definite and i hate taking meds.

Long history of anxiety and tiredness and very bad sleep and took for 25 years citalopram in a low dose. (Probably did not do good with rls but i needed it at that time)

Also extemely highly sensitive person which i read online makes you more prone to rls.

So definitely a relation to stress.

trying now to be less stressfull but i everytime i feel a little thing in my legs its full blown stress now.

Have been 3 times now to an osteopath, first 2 times it didnt do too much, he said my pelvis was not relaxed and organs in my abdomen. But last time i told him it moght be stress related and he took a different approach. Amazingly after that treatment my legs felt almost normal again and i slept so much better that night. Hoped it would stay but 2nd night was very bd again. but still it gives me some hope.

Still hoping it is all stressrelated but because my sleep is so bad now i think i will go to a neurologist.

Wonder what you make of this story.

[silvia10 in reply to silvia10]

a yes, my iron was 40 2 months ago, i started taking tablets myself and last week i had it checked again and it was only 48..... so now started eating meat everyday and still taking ironsupplements.

Also my potassium was checked last week and also low, 3,3 which is strange because i eat a lot of vegetables. Now taking coconutwater to up the postassium.

[Hidden in reply to silvia10]

HI, that does make things clearer.

It sounds as if you do possibly have RLS, but possibly anxiety symptoms as well.

The most significant blood test for iron is ferritin.

I'm not sure if it ferritin you were referring to as being 40.

If it is, then it's too low for somebody with RLS. I'll write more on this later.

SSRI antifepressants, like Citalopram, are an aggravating factor in RLS. Even a short course, a few months for me, turned my mild RLS severe requiring medication for the first time after decades.

With your symptoms Temazepam will be virtually useless.

It does appear your doctor is ignorant about how to treat RLS.

The main RLS medications are as Lotte describes

It might be a good idea to see a neurologist if your primary doctor won't prescribe an appropriate medicine, but there's no reason why they couldn't! That is except for being ignorant.

Many doctors are ignorant about how to deal with RLS, yours is more ignorant than most. Perhaps you need to educate him/her.

[silvia10 in reply to Hidden]

yes the ferritin was 40.

[Hidden in reply to silvia10]

Then in order to gain any benefit it would be better to raise it to at least 100. 50% of people with RLS find improvement with this.

As Lotte says, as your ferritin is below 75, then it possible to raise it to 100 with an oral supplement.

It's also worth repeating that it's better to take it every two days, NOT daily. Taking it once daily or more will prevent most of it ot being absorbed. It could be less than 2%.

Follow Lotte's suggestions and drink a glass of orange with the iron, (or a vitamin C tablet).

Here's some information on iron therapy for RLS.

sciencedirect.com/science/a...

[DicCarlson in reply to Hidden]

A big difference is the type of iron supplement you use to raise the Ferritin level. Ferrous Bisglycinate Chelate is a "designer formula", patented actually, and does not cause any stomach issues or constipation and apparently crosses the Blood Brain Barrier more readily.

[YodaDog in reply to silvia10]

Just to add that you need to be prepared that it may still take quite some time to raise your ferritin level to 75 (or even better 100+), but don't give up. Some RLS specialists say it needs to be nearer to 250/300 for some sufferers, but a significant number see an improvement once they are about or just over 100.