RLS AND THE HOSPITAL STAY

I know you are not supposed to bring your meds with you when admitted to hospital. So when knee was replaced I didn't. It was time for my carbadopa levadoopa, what I was prescribed for RLS. I rang the call button, every 15 minutes for an hour and a half. Every time an aide would come in and say the nurse will be right here. Seems she had a discharge and then went to lunch and nobody else can get meds. I was hysterical by the time she got there. I called my daughter and told her to bring me my meds. Just recently I had hip replaced. I had my RLS meds hidden in a washed out lotion bottle. My RLS has changed. I can tell when it's coming on. The thing with carbodoopa levadoopa is it gets worse before it gets better. So if my legs already started, after the carbodoopa levadoopa I will be in agony for at least an hour before the calm begins.. if I think it's been about 6 hours and legs aren't going yet I'll take it before it starts and it will start but the agony time isn't as long. Sorry this is so so long but Dr's need to know that RLS CANNOT BE SCHEDULED! When they start you need your relief NOW. Not in 15 minutes, not in 5 minutes.... I need it NOW. somethings need to be given to the patient to take on their own. I couldn't even take care of my own nicorett lozenges. I had to ask for one. Again so sorry but needed to be shared. God bless all of us suffering with this maddening disease and pray for a cure.

[Hidden]

That is such a shame you had to suffer like that.

I k ow in the UK you are meant to take your medication when admitted to hospital. That approach might have saved you all that stress and suffering.

Hope all is better now.

[Hidden]

Apologies, I don't know where you live, but in the UK, there is no actual law against taking your meds into hospital with you. In addition, when you're there, they have no right to confiscate them, they are your property.

They can't confiscate any money you take with you, nor clothes pr any other property.

They don't like it because they need to know exactly what meds you are taking and when, just in case there's any harmful interactions or double dosing.

Last time I was in I took my own RLS meds and kept them in my locker. They knew I was doing it and asked me if I had taken and recorded it.

Another point I hope you might find helpful.

Your statement that when you need to have your meds you need them there and then is quite worrying.

RLS IS more or less on a schedule, it's usually worse at night and the meds taken regularly, at the same time every day will PREVENT an episode, as long as the m eds are working.

This is true of the two main classes of meds for RLS, i.e. dopamine agonists and alpha2delta ligands. These meds are the most appropriate for RLS that occurs regularly i.e. more than about 3 days every week.

It sounds like the problems you're having are because you're taking L dopa, which may be great if you only have RLS intermittently, now and then, say 2 or 3 times a month

Unfortunately, if you take it quite a lot, then it's the worst thing possible for causing augmentation. It's because of augmentation.that it's hardly ever prescribed for RLS. It may be, from what you write that you are already experiencing augmentation. I can't say 100%, but it sounds possible.

Even the accepted dopamine agonists quite commonly cause augmentation. L dopa is significsntly worse.

It does sound as if you are terribly dependent on the L dopa and become desperate when you can't get it.

You are not in control.

I suggest if you need it so badly that you should consider switching.from ramdomly taking L dopa, to regularly taking a non-dopaminergic RLS med, that will a) prevent it and b) won't make it worse ny causing augmentation.

I think things could ne so much better for you.

[Hidden]

PS, here is a link to some information about augmentation.

It mentions dopamine agonists, but it's equally true if not more true for L dopa.

sleepreviewmag.com/2015/02/...

You might also find this informative

uptodate.com/contents/treat...

[Saljake1943]

Gabapentin is a great for RLS.

[bill54321]

I will tell you how I got the Chief ward nurses attention. When we need RLS meds, we need it NOW. When they were waiting for yhe time of the day for the med cart, I was going bananas. If I can'[t get the meds, I have to walk it off. So, they did not want to walk me. I need a walker. So, I grabed the mobile food tray stand and took off down the hall with my back end uncovered.Sure enough, about 5 staff members ran after me. The head nurse and security chief came to my room. I said, give me my med on time, or let me talk to the Hospital administrator before I called my attorney. I got my medication . BUT, they put a camera in my room to monitor my movement as a non compliant patient.Ha! I have the kind of medicare (discontinued but I was grandfathered in) that pays every thing. So, be a threat if that is what it takes. My lighting bolt ankle-knee motions hurt. Your Doctor needs to go to bat for you. Mine asked why I did not call him. I said I did but he did not return the call. Did I feel vindicated , or what?

[Hidden in reply to bill54321]

Great story Bill. I admire you. Nice image of bare butt trundling down the ward.

This dependency on the meds is a terrible burden.

I used to be terrified of not takng my pramipexole at the right time.. Had an alarm on my smartphone. If I went abroad, always carried my supply on my person, took more with me than I needed etc.

I'm still a bit like that, still have an alarm, but find that gabapentin is more flexible than p ramipexole.

If I ever have to go in hospital again, I'll carry my gaba on my person and they'll have to either sedate me to get it off me or surgically remove it along with whatever else they're cutting out.

[bill54321 in reply to Hidden]

Thank You

[Arkangel]

I am sorry that you had to suffer so much. In the UK we are encouraged to take our medication into hospital with us. last time I kept my RLS meds in my locker and I told the nurses when I had taken it. I also had to get up and walk about at night, they brought me a walker because I was holding onto the walls. Fortunately they were familiar with RLS.

[gaula75]

I had a similar experience after major surgery at a huge hospital. Everyone was great BUT I had to beg for my RLS meds because the orders were flr bedtime and it was only early afternoon. I was out of my mind wiith severe leg twitching for hours and was told I had to wait until bedtime. Absolute nightmare.

[Hidden in reply to gaula75]

I woud consider that abusive. I would ask the nurses to get them to change the orders and if they refused I would submit a complaint.

The timing of RLS meds is crucial and you have the right to take the meds you usually take, at the times you usually take them.

If you were twitching for hours they were casuing you unnecssary sufferting and this would be a breach of their code of conduct, an unethical act for which a registered jurse could be struck off the nurse register

In any event, like Arkangel, I take in my own meds and I don't let them take them off me.