For how long ? HELP!!!!!: Hello people... - Restless Legs Syn...

Restless Legs Syndrome

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For how long ? HELP!!!!!

Heatherlss profile image
21 Replies

Hello people,

I am currently withdrawing from DA and am now on day 9. I'm taking to tramadol x1 every night for the withdrawal, which generally had been manageable apart from a couple of rough nights. My RLS in the afternoon, which had been the result of withdrawal and not augmentation, had disappeared in the afternoon by day 4 I guess however, since the last couple of days, I had cut down on the Tramadol now taking 1/2 of it. Not only did my RLS increased in the last two days but today, it was also there in the afternoon. Is this normal? I'm getting worried now.

I hadn't augmented on the DA but after taking it for nearly seven months now, it was my personal choice to get off the regular 0.125/0.0625mg dose.

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Heatherlss profile image
Heatherlss
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21 Replies
LotteM profile image
LotteM

I don’t want to question your decision, as it is your own. I just want to say that augmentation is not a given result for everyone on a dopamine agonist. Also, you were on the lowest dose.

What I would like to ask is why you have to cut down your dose of tramadol already? It is early days in the withdrawal. Also, you had a reason to start the pramipexole (I assume that is the DA you took), and it may well be that these ‘baseline’ symptoms that you previously treated with pramipexole are not sufficiently controlled with only 1/2 a tramadol (25mg? I assume).

Finally, yes, withdrawal and/or undertreated RLS symptoms can be rough and generally are, I know from personal exerience. You have my sympathy!

Heatherlss profile image
Heatherlss in reply toLotteM

I understand that my decision does sound weird but I want to give my RLS a chance without medications. I figure that I was given RLS medication in a haste when it was my insomnia that needed treatment.

I looked to stop tramadol i.e. cut it into half because I was feeling relatively okay and I figured that the withdrawal period was coming to a close. Clearly, I was wrong.

I want to know if my dopamine levels would go back to the way they were before I started taking Pramipex or will taking tramadol mean that the pre dopamine levels won't be reached.

I'm a very anxious person so believe it or not, I'm actually worried about getting dependent on tramadol, which was the reason why I tried to half the dose.

I feel so done with these medications that I really wish to see how it will be without any medication.

LotteM profile image
LotteM in reply toHeatherlss

I understand. But from what I have learned on this forum and from your own account, you may have to give the withdrawal a bit more time. Try again in, say, a week from mow to half the tramadol dose.

Incidentally, have you had your blood iron levels, and specifically your ferritin levels tested? They should be not just ‘normal’ , but for people with RLS at least 75; higher is better. It may help reducing your RLS, it does for about half of the people with RLS, so definitely worth a try.

Heatherlss profile image
Heatherlss in reply toLotteM

I had my ferretin test, the level was 48. I am taking iron supplements.

I wanted to know if the body does indeed reach pre dopamine levels while taking tramadol to withdraw from Pramipex.

LotteM profile image
LotteM in reply toHeatherlss

No, it doesn’t. As it is not our dopamine levels that are compromised (as they are in Parkinsons Disease). We have fewer receptors on cells in a certain area in the brain that transport dopamine in and out of the cells. The idea is that the dopamine agonists (DAs) kind of trigger the remaining receptors to the max, to mimic the signal from dopamine in our brains. It works, for many for a long time, for some only briefly or not at all. We are all different.

LotteM profile image
LotteM in reply toLotteM

What I think you want to know is whether your RLS symptoms revert to pre- dopamine agonist levels. The general idea is that they do. It may take a while, weeks, months is what most people here report.

I hope this helps?

Heatherlss profile image
Heatherlss in reply toLotteM

I am sorry to bug you relentlessly with my doubts. I wonder if I should take tramadol for another week and then drop it by replacing it with Gabapentin. I hope that way the pre dopamine levels are reached.

LotteM profile image
LotteM in reply toHeatherlss

As I told you, the dopamine levels are not affected in RLS. So, no returning to the ‘pre dopamine levels’ as you say.

Yes, I think you should keep on taking the tramadol. However, I am not your doctor. I case of doubt, please check with your doctor. If you and your doctor plan to try gabapentin to treat your RLS symptoms, why wait to start with it? Gabapentin and tramadol can be taken together. Do start low on the gabapentin e.g. at 100mg, and only increase once a week if you don’t have adverse effects and try to find the lowest effective dose. That is what my neurologist advised and what I did.

Once again, talk to your doctor about this if you have questions or are in doubt. We can provide information or experiences, but we are not the doctor that knows you and treats you.

Heatherlss profile image
Heatherlss in reply toLotteM

Hi thanks for the advice. Fingers crossed. Hopefully things will get better in the coming days.

in reply toHeatherlss

Hiya, I recall reading your previous posts and think your decisions are driven more by anxiety than by reason. I recall you decided to withdraw from Pramipexole because you were scared of its effects after only 6 months at a very low dose.

Now you're prematurely cutting the Tramadol because you're scared of opiate dependence.

Perhaps it would help overall if you focussed more on dealing with your anxiety than on your RLS.

I also recall that you were previously worrying that if you stopped taking the DA, your symptoms would return to how they were before you starting taking it. No matter what you call it, "Pre-dopamine" or "Pre-DA" or anything else. Taking the DA for 7 months has not cured your RLS. So after the DA withdrawal symptoms have settled down and if you also stop the Tramadol then your RLS will be like it was before you started the DA.

If that was so bad that you felt you needed medication, then you might feel you want to start on another medication, say Gabapentin.

My worry is, if you read up.on the side effects of that, then you'll be scared of taking that too.

You need to deal with your anxiety.

Now your on this path of withdrawing from the DA and using Tramadol to get past withdrawal, I suggest, as Lotte says, STAY on that path.

You CAN start on Gabapentin now. I read the side effects when I started on it almost a year ago, but I went for it anyway and don't regret it.

I apologise for being so blunt, but I feel anxiety is a significant problem for you and perhaps you need some help to gain some coping strategies.

I know from my own experience it can lead us into making some awful decisions.

LotteM profile image
LotteM in reply to

I second everything Manerva wrote. Please deal with your anxiety, most likely it will also help your RLS, at least the way you deal with it.

Heatherlss profile image
Heatherlss in reply toLotteM

Hi LotteM and Manerva, I know that my anxiety is a real cause for concern but I'm already having therapy sessions for that. I've been told that one of the reasons why I suffer with anxiety is my lack of understanding of certain things so one way I could prevent it is if I have enough knowledge of what is happening around me. Thus the continous meddling of questions. I understand that it might feel annoying to you. This is not the first time. My apologies for that.

As for taking gabapentin, as you might have suspected, I already have gone through some of those side effects. It just so happens that I used to take gabapentin some time ago due to my arthiritis issues. So I do not think that I would refrain from taking it. Hopefully, it will not prove deterimental in any way.

But what I do have in mind regarding this withdrawal and everything is that I want to see myself on pre DA levels once again and understand if I could go through with it without medications in the long run. Thus, I am keen to find out as to how these things work actually. For example, I've read on here extensively that Pramipex leaves the body in about 14 days time so I'm already counting days, currently on day 9. But at the same time, I want to be alert and sure that I do not get used to Tramadol. I am continuing to take tramadol and will do the same tonight as well as per your suggestions, since my GP is not too knowledgable about this he has given me his support. However, I do hope that at some point, I will start cutting down on Tramadol so that I can observe my baseline RLS. I hope some of this made sense. I apologise again.

LotteM profile image
LotteM in reply toHeatherlss

Thanks for the update and clarification, heatherrls. I think both Manerva and I, and probably most others, respond out of concern. Your current approach sounds wise enough. Have you read the paper from the IRLSSG that I added yesterday to the pinned post about augmentation? I think the authors write that indeed withdrawal typically lasts 2-3 weeks. So by all means, give it some time and try occasionally whether you can do without the tramadol. Bit remember that you probably didn’t start the pramipexole for a reason; your ‘basal’ or pre-DA levels of RLS symptoms may be unbearable when untreated. Apart from the IRLSSG paper, it may also be wise to read through the last few pages of patient letters and doctors responses on the website rlshelp.org of Dr Buchfuhrer. You’ll see the pattern in the questions and his responses, and it may help you to decide what to do after the withdrawal period. The figures and table about treatment of augmentation in the IRLSSG paper are also very helpful and guiding. A good starting point for a discussion with your doctor!

Good luck and keep us posted.

Sara_2611 profile image
Sara_2611

i can only suggest you keep in contac with your GP

sorry for the italics -somehow i seem to have pressed a button that puts lettering in italics & no idea how to correct it

in reply toSara_2611

Press ctrl and "i" at the same time to switch on italics and again to switch it off

ctrl and "b" for bold on and again for bold off

ctrl "u" Underline on and again underline off

Simples

I wonder what ctrl and "z" does?

ZAP

Sara_2611 profile image
Sara_2611 in reply to

ok Thanks for the tip it seems to have righted itself lol

in reply toSara_2611

If you leave a post or leave the site and come back or start another post Iguess it'll revert back to normal. Ive never tried

Sara_2611 profile image
Sara_2611 in reply to

Cheers manerva

Dogdoo profile image
Dogdoo in reply to

Control and Z will return text to a document if you delete it by accident!

Also, control c to copy text, control v to paste.

Control a to highlight everything on the page!!

I have a job where speed is crucial!! Lolol

in reply toDogdoo

Thanks Dogdoo

ctrl + z. was a joke I didn't know it did anything

I use alt + backspace for undo

ctrl x cut

on my laptop -

ctrl p print

ctrl s save

tab = next field or next table cell

home beginning of line

end end of line

ctrl home beginning of document

ctrl end end of doc

ctrl + right cursor key next word

ctrl left cursor key previous word

ctrl + shift + home select everything to start otf doc

alt + spacebar change to cyrillic keyboard

алт + спасбар change to latin keyboard

etc

I like to do things with minimum effort

I got the zap idea from a book of "last words" like

"What does this button do?". and

" What duck"?

Hi Heatherless - have you tried logging onto drugs.com to find out how tramadol reacts with the drugs you have been taking? I don't think you are being unnecessarily over anxious about your drugs, as some drugs have different side effects on patients including liver function and mental health problems eg Gabapentin. Drugs.com has features on drug side effects, and reviews from people who have used them. Hope the restless legs syndrome settles down.

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