RLS

[Yonkers]

I forgot to put in my recent post that I only have RLS in my legs and only at night or sometimes if I am taking a long car trip(I’m not the driver!) When I was diagnosed the dr. said the I kick violently! 😱

[Hidden]

Hi sorry to hear of your problems.

Apologies, I have to ask, but your doctor says you kick violently, have you not noticed this yourself?

This isn't as silly a question as it sounds. 80% of people also have PLMD, (Periodic Limb Movement Disorder), violent leg kicking which mainly occurs only when you're asleep and most people with PLMD don't know they're kicking.

In that case, how does your doctor know?

Weight gain is one ofthe listed side effects of pramipexole, (Mirapex) and the other dopamine agonists used for RLS, i.e. ropinirole or rotigotone.

I confess, I don't know why that is.

Switching to gabapentin may possibly be advantageous for you mainly because you are so young.

Unfortunately, weight gain is also listed as a possible side effect of both gabapentin and pregabalin, (the two gabapentinoids that can be used fir RLS).

However, in this case there seems to be 2 possible reasons. One is water retention, the other is they may act as an appetite stimulant.

If this is so, then wright gain can be counteracted by natural diuretics and by appetite control measures.

In addition, weight gain is only a "possible" side effect. It mustn't be automatically assumed that you wiil gain wright with gabapentin. After starting on gabapentin, I lost weight. Now I'm slowly gaining it again.

I lost it because I went on a diet. I'm gaining it again because I relaxed the diet!

Furthermore some people who gain weight due to gabapentin report this isn't so much a problem if they switch to pregabalin or vice versa. There's no accounting for this they work the same way. I suspect a psychological element.

The main advanatage of switching from pramipexole to gabapentin.or pregabalin ( neurontin or lyrica) is because of the long term complications of using a dopamine agonist, any of them.

The main and most significant complication of using pramipexole is augmentation which to me, seems far more serious than weight gain.

Augmentations occurs commonly and the risk of it rises the higher the dose you take and the longer you take it for. Some people suffer augmentation without realising what it is.

If you aren't aware of this, if the pramipexole has started being less effective for you and/or if you've had to increase the dose, then you may be on the verge of augmentation. I note you onky get RLS in your legs and only at night, this then is not yet full blown augmentation.

This is sufficient reason for switching to gabapentin if you need to. If it's just weight gain then there may be no great advantage.

Another factors with gabapentinoids is that there is an FDA warning about the risk of them causing respiratory distress in people who have a pre-existing breathing problem. However this had to be a "central" problem not simple a lung or airways issue.

Sleep apnoea, in this case could mean that gabapentinoids should be used cautiously. However, it would have to be "central" sleep apnoea, not "obstructive".

I will have to take a break now and will add more later.

There is another problem with Mirapex which might be causing weight gain.

[Yonkers in reply to Hidden]

My doctor had me do a sleep study and that’s how they discovered the violent kicking! Now that doesn’t happen all the time, it’s just occasional.

[Hidden in reply to Yonkers]

Great, that's PLMD.

Same treatment as RLS.

[Micafe in reply to Hidden]

Interesting. My son-in-law has told me he also suffers from RLS. I was discussing the subject with my daughter today and what she told me about what happens to her husband is exactly what you are saying about PLMD!!. It's very different from my RLS. I don't kick, I never have.

Her description of what he does when he's sleeping sounds pretty horrible to me. He also has apnoea. Is that a coincidence? I have the feeling he doesn't have RLS. What do you think?

The other day I wrote about my using a menthol lotion for my RLS. I'm very happy! It hasn't bothered me in 14 days!

I'm having other problems, though, I just posted about the bad pain in my right leg that I believe could be related to my peripheral neuropathy that was caused by chemotherapy.

[Hidden in reply to Micafe]

PLMD and RLS are closely related. 80% of people with RLS also have PLMD. Very few people have PLMD without having RLS.

The other significant feature of PLMD is that it occurs during sleep and doesn't wake the sufferer. It's usually the sufferer's bed partner that observes it.

Many years ago, I was woken by my wife pulling the duvet off me, completely off the bed. I asked what she was doing and she said she wad going to sleep downstairs because I was kicking her. I had no idea! I didn't know about PLMD then and I didn't have RLS then. A few years later, I did develop RLS. Strangely, the PLMD seems to have disappeared.

It is quite rare to experience PLMD whilst awake. However, like others with RLS, when my RLS was at its worst, I developed "twitching" , which is involuntary movements, of my legs, shoulders and arms. I discussed this with a neurologist and we agreed this was RLS and NOT PLMD. The movements are different.

This shows the close relationship between RLS and PLMD. Your son in law will.possibly show RLS as he gets older.

The treatment for RLS and PLMD is the same.

Peripheral neuropathy can cause pain. It can also make RLS worse. It's possibly why the menthol is effective for you.

[Micafe in reply to Hidden]

My husband has never said I kick him when I am sleeping. As a matter of fact, I just asked him after reading your note and he said "no, you don't".

[Hidden in reply to Micafe]

Gteat, you don't have PLMD then. Unless your hisbands sleep is so deep he doesn't notice!

Does he bruise easily? 😁

Some people's PLMD is so violent they injure themselves.

Sleep apnoea doesn't wake you up, but it does alter the quality of your sleep. Some people feel inexplicably tired.

Obstructive Sleep Apnoea (OSA) is probably the most common form. I think doctors only worry about it if your oxygen saturation levels fall. Another reason for having a sleep study if it's suspected.

Often people with OSA snore as well. Snoring is a sign of partial obstruction.

My wife doesn't actually stop breathing but she sometimes sounds like a combination of a saw mill and a steam engine. When she gets a full head of steam she jerks and sometimes hits me, but she has no idea she's doing it.

Shhh, I never tell her, 😇

[Hidden in reply to Micafe]

PS, sleep apnoea is also associated with RLS/PLMD so that's not unusual either.

The thing abot both PLMD and sleep apnoea is that you might not realise you have either unless someone tells you or you have a sleep study.

[Micafe in reply to Hidden]

Having apnoea sounds very scary to me. So, there's no way to know when you have it unless someone tells you? Doesn't it wake you up?

[Hidden]

The other complication of dopamine agonists, including pramipexole is that in some people it can cause an Impulse Control Disorder, (ICD).

ICD is addictive or compulsive behaviour. It can take one of various forms which includes gambling, compulsive shopping, hypersexuality or compulsive eating.

If you have developed the ICD of compulsive eating due to pramipexole, then this will have led to weight gain. Unlike the gabapentinoids where weight gain could be managed, an ICD causedby pramipexole is best dealt with by stopping taking pramipexole.

I hope this helps you weigh up the pros and cons of switching from pramipexole to gabapentin.

Pros FOR switching

If you compulsively overeat then it may be an ICD.

If you were suffering augmentation.

If you are suffering insomnia.or anxiety.

Cons AGAINST switching

If your weight gain is not due to an ICD

If you are on no more than 0.25mg pramipexole, it's working and you've never had to increase it.

You suffer from depression.

ALTERNATIVELY

You might consider stopping taking all medications for RLS.

This would require -

Having blood tests for any mineral or vitamin deficiencies, particularly iron and correcting these deficiencies.

Checking if you're taking any other medications that may be triggering, (causing or making worse) your RLS and stopping these or using alternatives. There's a long list of medications.

Lifestyle changes - avoiding alcohol, caffeine and added/simple sugars or refined carbohydrates.

Various diets depending on any allergies you may have, e.g. gluten or lactose. Also a low carbohydrate or mediterranean diet. These have the advantage of weight loss . A low oxalate diet.

It's arguable that these would entirely control your RLS and any effect will not be immediate.

If you do decide to stop taking pramipexole, whether or not you start on a gabapentinoid please be warned you cannot do this suddenly.

Firstly, this is dangerous.

If you do have an ICD, compulsive eating due to the pramipexole, then you would be at risk of DAWS, ( Dopamine Agonist Withdrawal Syndrome), which can lead to severe mental health problems.

I hope this information answers your questions.

[Hidden]

Personally I take a little bite of a nicotine replacement tablet. It stops my restless legs every time and instances are now rare. Good luck with whatever you do.

[daisyw in reply to Hidden]

How did you discover that?

[Hidden in reply to daisyw]

Daisy w I tried all sorts of things and it was one of the many things I tried and the nicotine tab was and is the only thing that worked for me.

[daisyw in reply to Hidden]

So pleased you found something that helps. The tablets prescribed to ease the condition seem to be horrendous. I get some relief by sleeping with my feet elevated and legs stretched, not bent in the traditional sleeping position. Trial and error lol