what now? answer: nothing

[ookla]

nurse called this morning. i guess we're throwing in the towel. doctor doesn't know what else to try. sticking with neurontin at night for sleeping, but just have to accept there's no help for my daytime rls symptoms. i have to admit, i'm a bit depressed now.

[Hidden]

Did you not ask about the tramadol....??

[ookla in reply to Hidden]

No response to that. I assume that meant it was a no go... but you're right, I should follow up on that. I just called the nurse and asked her to ask the doctor about it.

[Hidden in reply to ookla]

I hope you get it, whether it will work or not is another thing, but as i said before, its worth trying....anything is worth trying, and taking the tramadol at the weekend, starting on a Saturday morning you can see if it causes you to have the sleep apnea, or makes you too sleepy in the day....

[ookla in reply to Hidden]

Yep, doctor said no to taking tramadol in the morning. Oh well.

[barried in reply to ookla]

I do not see why your Doctor should just refuse Tramadol. I take the slow release 150mlg, one at midnight and the other at midday - time is not so important as long as 12 hours apart and a max of 400mlg per 24 hours. I take 2 x 150mlg = 300mlg per 24 hours.

He should give you the opportunity to at least 'try' any medication which has been recommended by people who have suffered RLS for many years. Having read the many recommendations by sufferers of RLS on this and other websites I would, if I were in your shoes having been told 'no', I would order said meds on the internet to give me the opportunity to give the meds a trial. None of these meds are going to kill you and you might just find the one that suits you.

Some/many Doctors appear not to know enough about RLS and are not prepared to prescribe drugs for fear of being sued for any number of medical actions.

[ookla in reply to barried]

There might be some confusion there and some miscommunication, as is to be expected sooner or later when being forced to communicate through a third party. The main issue with tramadol was it gave (or made worse) me sleep apnea, which was bad enough that I was having trouble staying awake while driving even short distances and trouble staying awake at work or sitting down anywhere for more than five minutes (and there's the side issue of it being a libido killer). But I think someone in the chain thinks tramadol makes me sleepy. But it doesn't. The sleep apnea is what makes me sleepy. It's not just semantics, that was the whole point about asking to take it in the morning. But whatever. This go between system has worn me out. I'll just wait and ask the doctor about myself at my next appointment.

[Hidden in reply to ookla]

Nothing worse than NOT actually speaking with your doctor, and having the nurse as the go between, I hope at your next doctor's appoint. you get to at least discuss the tramadol and how you would like to try it...

Good luck....

[Hidden in reply to ookla]

I am sorry to hear that....did your doctor give you a reason...?? I would be as mad as hell, if my doctor refused to give me a medication to try, without a valid reason...

[Hidden in reply to Hidden]

I would be mad as hell too. I'm sorry that it's

been such a challenge for you to get some

kind of medicine.

Tramadol didn't help me much. It was better

than nothing!

I would split the tablets in half if apnea was

a problem.

It seems like sleep deprivation takes

life right out of all of us.

[ookla in reply to Hidden]

I tried that. As much as I love tramadol, it doesn't seem to like me!

[ookla in reply to Hidden]

I think someone got confused and thinks tramadol makes me sleepy. At this point I'm burnt out. I'll wait and talk to my doctor about it at my next appointment.

[thedragon in reply to Hidden]

It's so weird how one thing works for one and not others....I wonder why? Tramadol did nothing for me ...no effect whatsoever on anything, yet co codamol does .....also the doc said let's drop the paracetamol part and just use codeine neat......that had no effect either....so a lower dose of codeine mixed with paracetamol works better for me than a stronger pure Codeine.....must be a dragon thing.!!!!

[Hidden in reply to thedragon]

When I took full codeine, I kept waking up too. Once awake,

the legs start in full blast. = /

I just gave up being on Vicodin... I decided 3 nights ago. I

was needing more and more of it to get the same effect.

I don't want to be knocked out...I want to live life. I want

to participate in life.

It's been heck coming off it... I was using it 2-3 nights a

week... they are now gone out of my house.

I don't know what I will do except use heating pads and

wear those compression stockings, stand up next to my

bed with the top body on the bed until I fall to the floor.

I look like an idiot (I'm sure) but I fall asleep praying in

that position most every night.

[ookla in reply to Hidden]

I wish I could try vicadin or codeine, but I can't take either one without throwing up.

[Hidden in reply to ookla]

My life is very hard without Vicodin. I can't sleep

for more than 10 or 20 mins at a time (guessing)

I am not working now. I am getting little tiny naps

here and there.

I am hoping that I will get at least 6 hours of straight

sleep tonight. I'm sick of feeling bitchy, not being able

to concentrate and having very low energy.

I'm not getting much done today. It's a no shower,

no makeup, Ponytail kind of day for me today.

I am in survival mode, not productive day today.

[ookla in reply to Hidden]

I am so sorry to hear that. On my difficult nights, I thank God for cell phones and lay in bed distracting myself as best I can with surfing the net and playing stupid games until my body's need for sleep overwhelms my RLS's need to drive me crazy. I sincerely hope the rest of today goes by fast for you and you have a much easier night tonight. If it makes you feel any better: ponytails are kind of hot and makeup is yucky.

[Hidden in reply to ookla]

Not yet but I am trying another new over the counter medicine tonight.

It's called Mid Nite.

Has 1.5 melatonin, Lemon Balm, Chamomie, Lavender. as the active ingredients.

I took it 40 mins ago and my eyes

are starting to feel very heavy.

My legs seem a little bit calmer but not

much.

Thanks for the well wishes.

I wish and pray for most everyone who

suffers a restless night for any reason.

[ookla in reply to thedragon]

It's so not fair. It's like we have to stumble onto a med by accident to get relief. There's no predictability. I bet eating bananas that were soaked in ketchup and soy sauce is the cure, but no one's thought to try it yet.

[Hidden]

try what i did, print of some info from here, and take it to your doctor. doesnt have to be from this forum, anything that will show them how to treat you and what with, if it doesnt please them to see it, maybe it will shame them into trying to think for themselves, and to help you , as that is their job, some doctors just dont want to bother to look things up

[ookla in reply to Hidden]

I'm not sure what I would show him. We've kinna run the gammet already. I tried requip, mirapex, horizant, tramadol, neurontin, nupro, klonopin, and probably some other things I'm forgetting. I think I'm just out of luck.

[Hidden in reply to ookla]

So you puke from muscle relaxers and pain pills...

I used to.

I ate food/ food with my pain pills and did okay.

The nausea went away after some more doses.

I do regret getting hooked on pain meds in order to get

some calmness in my legs so I could sleep. I would have

to take more than prescribed for it to work anymore for me.

[ookla in reply to Hidden]

Yeah, I was afraid of that. I could feel the tramadol's effectiveness fading. The doctor wanted me to start taking more of it, but I started taking less instead, hoping to preserve its effect. Instead of taking 100 mg in the morning and 100 mg at night, I started taking just 50 mg at night so I could fall asleep. I was very scared of that slippery slope.

[Gonzo123]

Ookla I went to see a movement specialist in Bath Clinic and was put on Ropinirole Slow Release of 4mg at midday and 2mg later in the day, and it seems to work. It is the slow release part that I think works.

[ookla in reply to Gonzo123]

I'm so glad you found something that works for you.

I'm never going near another dopamine agonist again. It never ends well.

[Alisdair]

My consultant said if normal ropinirole stops working use slow release. Tramadol does work but sends me doo lally!

[ookla in reply to Alisdair]

Since ropinirole didn't work for me in the first place, and neither did the neupro patch, I don't think the slow release ropinirole would be any better. Those DAs always give me augmentation.

[Rubylane25]

Did you ask about Fentanyl

[ookla in reply to Rubylane25]

No, i forgot about that. At this point, someone would probably think I asked about falafel and I'd be waiting three days for the nurse to tell me not to change my diet.

[nightdancer]

If you have sleep apnea, and that is the reason they will not give you tramadol, Fentanyl is strong narcotic, and I think your doctor would not go for that either. Best thing is to wait and see til you can talk to your doctor face to face. IT sure is different in the UK than it is in the US, for sure. We do not do many "go between" things, because they always get mixed up. It is like that game you play when we were kids. You line up the whole class, one person says one thing at the beginning of the line, and then it goes down to the next person and so on. By the time you get to the end of the line, the original statement has been changed dramatically.

[ookla in reply to nightdancer]

I'm in the US. And it's EXACTLY like that game (we call it "operator") and that's exactly what I was thinking of. By the way, thanks for responding. I always enjoy reading all of your posts.

[thedragon in reply to ookla]

We call it Chinese whispers ......no idea why!!

[ookla in reply to thedragon]

Interesting. The "whispers" part makes sense. I don't know why we call it "operator."

[Hidden in reply to nightdancer]

but Ookla is in the usa i believe

[ookla in reply to Hidden]

Yep.

[Tiredparent Restless Leg Syndrome]

To be fair, I think the go-between situation is unusual in the UK. I think it just occurred because ookla phoned with a query after the appointment. The NHS certainly has its faults, but usually patients do get to see their doctor/consultant at an appointment. The staff are always stretched so I imagine that the doctor just didn't have time to return ookla's call so the nurse tried to help.

[ookla in reply to Tiredparent]

I'm in the US. I think I live in an area that just has bizarre protocol. It is standard procedure here to communicate with the nurse on the phone. You get to see "The Doctor" once at the initial consult. After that, all your appointments are with the medical assistant - and all phone calls are handled by the nurse. You leave a voice mail for the nurse stating why you're calling, she calls you back to clarify, then she talks to the MA, then the nurse calls you back. That's how it always is. I hate it.

[thedragon in reply to ookla]

Oh I didn't realise you are in the us. We sometimes have that system here as Rosie said , but it's not compulsory. It can be helpful in certain cases when a nurse can help with a problem. Or its a simple query that doesn't require a docs time!

[ookla in reply to thedragon]

That's probably my fault. I do a pretty good British accent.

[Hidden in reply to ookla]

yep i heard you

[thedragon]

Ookla....can you insist on an appointment with your gp. I know this triage system is not ideal but it does work for a lot of cases. Just refuse to speak third party. For all its faults ....thank heaven's for the NHS ....for as long as it remains!!!

[ookla in reply to thedragon]

It would take a long time to get an appointment with my gp. I could see his ma sooner, but I'm not sure if they'd be much help. I think I'm better off sticking with the sleep health place (they're the local RLS experts)... because if the neurontin doesn't work, I'm going to insist on going back to tramadol and then I'll need treatment for the sleep apnea.

[thedragon in reply to ookla]

Ha ha ....go and see his ma then...she might have the answer!!!!

[ookla in reply to thedragon]

I might do that. I have an appointment with my RLS place next month. If things aren't better by then and the appointment isn't productive, I'll go back to my gp.

[Hidden in reply to ookla]

Keep us posted. You are in my thoughts and prayers.

I feel for ya... I really do.

I see good and bad arguments for pain killers

being used to settle the legs.

Good luck with the tramadol. At least you will get

some sleep even if you have to wear an apnea

mask.. it's worth a good night's sleep.

[ookla in reply to Hidden]

Thank you. Realistically speaking, I don't think I can go back to tramadol. It caused too many, um, marital problems. I'm all in on neurontin now. If that doesn't work, I don't know what I'm going to do.