More failed medication attempts

[ookla]

So this week I'm trying codeine and/or ambien. The codeine is 15 mg and seems to have no real effect (there might be a slight effect) and whatever it does doesn't last very long (seems to wear off after an hour), also gave me head aches. I think I actually slept better on the ambien (didn't feel as groggy in the morning), but I was drowsy all day long and couldn't wait to go back to bed. I asked my doctor if I could try skelaxin, so I'm waiting to hear back on that.

[Hidden]

Oh dear, what are we going to do with you ookla. The codeine is quite a low dose, some take 30mg. Which med made you drowsy all day, codeine is an opiate so that can make you drowsy the next day, it did me, and i felt spaced out, that is one i cant take. Ambien has a short half life so that should have left your system by the next day. Skelaxin i had to look up, havent heard of that med. its a muscle relaxer, so not sure that will help with your PLMD. But i guess anything is worth a try for you.. By the time you have got through the book of meds, not only will you know all about them, i will have learnt alot along the way too...!!

[ookla in reply to Hidden]

It was the ambien that made me drowsy the next day. I suppose I could try to increase the codeine dose, but I'm thinking about going back to not taking anything at all. All the meds seem to come with unpleasant side effects, the worst of which is the decreased libido. Although having crazy legs isn't exactly a mood enhancer, either. So it's a catch 22. But my pregnant wife is alternating between sad and mad that I'm "not interested" in her anymore... so something has to change somewhere.

[Hidden in reply to ookla]

You need to be careful with the codeine, because of it being a opiate, like the Tramadol, it could cause you to have sleep apnea. But worth trying i guess. All meds have side effects, unfortunately, some of us get them, some are lucky not to. Well, if your wife is pregnant, you must have been giving her some type of attention...lol.. I suppose before meds took over..

As always keep us informed.

[ookla in reply to Hidden]

Yeah, I'm sure codeine would give me sleep apnea just like the tramadol did. Doesn't seem worth it. My body gets attached to medication so easily and then it's a hassle trying to taper down to get off them. It's really annoying that my body is so sensitive to all the negative aspects of meds and refuses to get any of the good effects.

[Hidden in reply to ookla]

I wish i knew how to help you more.... I thought i was sensitive to all the meds, but you take my crown from me. I get side effects, but i do get the positive from the Pramipexole.

[ookla in reply to Hidden]

Thank you. I'm glad you get something positive from pramipexole. Hope it lasts a long, long time.

[Jaynielynne in reply to Hidden]

My thoughts exactly Elisse. Pregnant wife, no action. How cute is that?

[helenhugs]

I take 60mg of codeine at night along with 30mg in the day for the breakthrough pain. It is in conjunction with a whole host of other meds though but it hasn't done the trick for me.

How are you getting on with it?

[ookla in reply to helenhugs]

The codeine didn't really do anything at 15mg. I'm not sure I should bother increasing it since I'll probably get the same side effects with it that I got with tramadol (decreased libido, sleep apnea, etc.). What else are you currently taking? What else have you tried? Have you found anything that's helpful yet?

[helenhugs in reply to ookla]

Currently I am on......

200mg tramadol at night (+ top up throughout the day as required, I also have a back problem)

500mg naproxen twice daily, can be taken in 1 dose if required.

20mg domperidone up to 3 times daily (because the meds can make me feel sick)

30mg baclofen (can be split in to 3 x 10mg doses)

1000mg paracetamol (as required)

200mg ibuprofen 1-2 up to 3 times daily

4mg ropinirole

60mg codeine nightly (+ up to 30mg during the day for breakthrough pain)

Not found anything that really helps yet. I'm back to the doctors this week hopefully as I'm really struggling. I've tried most things, apparently I only have 1 last med to try which is why I have been putting off going back to the doctors, I'm scared if it doesn't work I'll be spending the rest of my life like this :S

[ookla in reply to helenhugs]

What's the one last med left for you to try? I think I've tried everything at this point (everything my doctor is willing to try, at least). I think next week he's going to give up and send me somewhere else.

[helenhugs in reply to ookla]

sorry just seen this. I can't remember what the med was called, it began with a C.

After an appt and a quite lengthy discussion it was agreed we wouldn't try that as the neurologist clearly wasn't specialising in RLS, the email response the GP got began, "I'm not sure how much help I can be". So we discussed some of the other options I had heard mentioned here and I am now on

200mg tramadol at night (+ top up throughout the day as required, I also have a back problem)

500mg naproxen twice daily, can be taken in 1 dose if required.

1000mg paracetamol (as required)

200mg ibuprofen 1-2 up to 3 times daily

pramipexole 0.088mg (I think the dose is).

Will hope it works I slept better last night, think I had about 5 hours

[Jaynielynne in reply to helenhugs]

That's so much. You have 3 over the counters and muscle

relaxers, 2 prescription pain pills and a rls pill. If you take

that everyday, the liver and kidneys are going to hate it. Does your doctor know that you are taking over the counter pain relief pills on top of the prescribed? I would worry about that. I think that your doctor should rethink that and get a strong long acting oxycotin drug going so it's 12 hours of steady pain

relief plus your tramadol up to 4 doses every 24 hours. Bring

that list in that you showed us above and ask about the safety

for your liver and kidneys. Sometimes doctors overlook the

over the counter medicines.I wish you luck sweetheart.

I hope that you get better relief with fewer pills.

[choppas in reply to helenhugs]

hi,what are ur illnesses?have you ever tryed CELL SALTS>brighterdayfoods.com.have a look and see which ones ul need.dont trust doctors they just make u sick.look more natural and have faith in the cell salts.best luck on ur journey.i was ill all my life then i found cell salts now i take no meds and wouldnt bother or offer myself any pain blockers,pain is an indicator of problems ,the level depends on severity why would we wont to block it.that to me is same as putting tape over a red flashing light on the dash of ur car,um i think that light is the low oil light.pain needs to be iknowledged dont ignore it with there gold watch remedies.

[Hidden in reply to choppas]

Pain meds are used for RLS. Unfair to say doctors make us sick. If the Cell Salts helped your RLS, then thats good for you....Not all natural remedies work for everyone. RLS is neurological....!

[nightdancer in reply to choppas]

If I did not use pain meds for my RLS, I would have nothing that works. Just to chime in here, I have done LOTS of research on the cell salts along with someone else, and I am in possession of a book that someone sent me. I did not pay for it, usually 30 bucks) but finally got a copy of it. May I just say in my own humble opinion, I would not be here without my doctors, and the cell salt thing has been proven not to help, and even "all natural things" have side effects and can make you very ill. Like Elisse said, no fair saying "doctors want to make us ill". I see so many things about "Big Pharma is making you sick on purpose". Cell salts cannot help a neurological disease, but there are always exceptions, even one in a million. But, if we are referring to cell salts and the "cure for RLS" from a German author, this guy never had RLS. He had neuropathy, but lumps them both together. While they may help you, you cannot say to people with a real disease not to go see a doctor for it. If it were not for my doctors, I would not be able to function. Different strokes for different folks and different "treatments" as well. Glad the cell salts work for you, but they are not recommended, even by lots of naturopaths, not just medical doctors.

The ones that you buy are so diluted, (lots of emphasis on the German salts) that it is almost a placebo effect, and there is nothing wrong with that either. But, cell salts are not going to change your brain chemistry or help your biological clock straighten out, etc. Good luck. How long have you been using them? I am a chronic pain patient, and sometimes all we have are the "band aids" to help out, and the pain meds definitely are the only things that stop my RLS. (am in the US so probably use some that you do not have in the UK)

[jumpylegs in reply to helenhugs]

Ookla........ 15mg codeine might shift a headache but I doubt it's near enough for RLS treatment. I use 30mg x 2 cocodamol plus tramadol plus ropinerole. It sounds like you might need to adjust doses and try a medication for a longer time while adjusting and/adding.

[ookla in reply to jumpylegs]

Yeah, that's what I thought, too, but the doctor got mad at me when I wanted to go up to 45mg of codeine (30mg didn't do much, either). He's done working with me and has referred me somewhere else. Hopefully they'll give me something that's a little stronger than codeine and lasts more than an hour or two.

[Hidden in reply to ookla]

Keep us informed ookla, hope who you see next works out what is best for you.

[ookla in reply to Hidden]

You're not going to believe this. The appointment isn't until mid-April. In the meantime, my GP has me trying elavil at 10 mg for two weeks and then up to 20 mg for another two weeks. I know antidepressants make RLS worse, but my GP thinks it's a nerve problem instead. I've been on the 10mg since last Friday and so far nothing, but I don't know what the therapeutic dose is supposed to be... I'm sure it's not 10 and we're just starting slow to minimize side effects.

[Hidden in reply to ookla]

Oh, i can believe it....unless its classed as urgent, then you get to the back of the queue. Ok, 10mg of a antidepressant is low, my daughter has just been given 10mg of amitryptiline (can never spell that right lol) for some bad headaches she has been having (she hasnt inherited my RLS) So, even tho the one you are taking is not working, do you think its made the RLS worse. If that IS what you have. Altho, if i remember rightly, it seemed you were suffering from PLMD..?? If nothing has changed, then i guess that something in your favour, that anti-d isnt working against you, even tho its not working for you as yet...

[ookla in reply to Hidden]

Wow, what a small world (of meds) that I was given the same a-d as your daughter. I'd never heard of this one before. As for if things are worse, that's hard to say. It's such a small dose, so maybe it shouldn't? I know there was one day that my legs definitely felt worse than usual, but it's hard to say about the other days. Also, I worry that even if I think my legs are worse, are they really worse or is that just in my head? I'm trying to be patient with this and give it the two weeks on 10mg and then the two weeks on 20mg to see if any relief kicks in. But I do kind of suspect that my legs are worse. On the plus side, the side effects haven't been too bad. There was extreme sedation that only lasted the first three days, dry mouth in the morning, and dry eyes. So I guess there's that.

[Hidden in reply to ookla]

The anti-d my daughter has been given, is one of the worse for RLS, for MOST people. Both of my adult kids seem to have escaped so far from inheriting my RLS. She also felt a bit sleepy the next day. I think we all think, are my legs worse, am i just thinking they are. Try NOT to think about it. hard to do i know, when thats all you want to think about. Oh dear, too many thinks i have typed..lol. Keep in touch, i am interested on how this spans out for you... Oh, the list of anti-d's are on the usual website to look at... rlshelp.org i think the one you are taking is on that list on the treatment page.

[ookla in reply to Hidden]

I learned the trick was to take the Elavil (Amitriptyline) a little more than 12 hours before I want to wake up the next day. My alarm is set for 7:20 am, so I take the elavil at 7 pm. Maybe that trick will work for your daughter. I will definitely keep in touch here.

[nightdancer]

I ahve not rea the replies below, as i am flyin thru here, but in my own experience with Skelaxin, it was nightmare. Muscle relaxers (some of them) are known to actually make RLS worse. RLS is not a muscular thing, it is neurological disease. But, just in my experience, remember, I took it for 2 nights and bounced off the walls. It was close to being as bad when I was on the wrong antidepressants. So that's my story anyway, and it is on the list of "drugs and foods to avoid" om rlshelp.org on the treatment page.

[ookla in reply to nightdancer]

Doctor gave me baclofen instead. Hasn't done much. I'm operating under the new assumption that I don't necessarily have RLS and maybe something else is causing my leg pain. It's not really responding to neurological, so I guess the next steps are muscular or vascular.

[jumpylegs in reply to ookla]

Check the four criteria for RLS. If you answer yes to all four then you know if u have or have not Rls. And your ferritin blood serum needs to be checked and confirmed that it's up over 75. Get the actual figure. Dr may say 20 is ok...... but not if you are an RLS sufferer.

[ookla in reply to jumpylegs]

My ferritin levels were ok. I think it was like 102.

[Jaynielynne in reply to nightdancer]

before you fly, what usa forum do you know of for my brother and me.