My Stupid question!

[welschrispy]

Please ignore my previous post - I was panicking. I figured it out for myself and the answer is that it would take over fifty Mercinadol - so that is not going to work.

I am having a very bad time and my symptoms seem similar to DAWS. I stopped taking pramipexole on January 4th. I am still suffering depression, nausea, anxiety etc etc. I take 400-60mg Tramadol and 280mg Pregabalin as well as Welbutrin XL.

It says online that Daws can last for years. I am 76. and I am near the end of my tether. It seems to me that I am worse off than I was before cutting out Premipexole. I needed a holiday from the stuff and I have certainly had that! but what will happens if I start taking Premipexole again? I was taking 4mg Premipexole. !!!

How do I titrate back to Premipexole?

It is also possible that I have Long Covid since the symptoms ar almost identical. I really don't know what to do and my doctor doesn't either.

Any advice welcome.

[Joolsg]

Chris,Do you still have any RLS symptoms or is tramadol and pregabalin completely covering the symptoms?

If depression and anxiety are still an issue you should see one of the top experts. I see you are in Canada.

You can write to Dr Mark Buchfuhrer or Dr Andy Berkowski, both top experts. They usually reply.

Both doctors report that around 98% of patients can be free of RLS and doing very well with the right doctor and the right meds.

In your case they may suggest different meds.

Mark Buchfuhrer can be reached at

[e-mail]

Andy Berkowski at

[e-mail]

[welschrispy in reply to Joolsg]

Hello Joolsg,

Thank you so much for your reply. No the meds I am taking do not completely cover the RLS but it is much better than it was. My concern is augmentation since I am already taking a large dose of Tramadol (4-6mg) as well as280mg Pregabalin. I am usually OK on 6mg tramadol but I am aware that this may cause augmentation.......

I'm just frankly terrified of taking a stronger opioid medication. (just saw a documentary about the evils of Oxycontin and it's manufacturers. I am not easily rattled but that scared the heck out of me!)

The specialist here says that Buprenophine is my next option but I already tried that and had some awful side affects. But it looks like its time to try again and besides that was before I stopped taking pamepexole and my discomfort threshold has changes considerably since then!

BTW I did manage to save myself the withdrawal from Tramadol. I borrowed some Hydromorphine1mg from a friend and had absolutely no problems, in fact I felt better than I have since all this started. So perhaps this would work for me?

Is it so that when taking Buprenophene you can't have surgery because the anesthetic won't work? Or am I making this up.....?

The other problem I am having is that my short term memory is in shreds and this is causing all sorts of life befuddlements!

I am going to write to the specialists you recommend and hope it's Ok if I get back to you.

Many thanks again.

[SueJohnson in reply to welschrispy]

The pregabalin might be the cause of your short term memory problems unless you had them before you started it. You might want to come off it. Reduce by 25 mg every 2 weeks to avoid withdrawal symptoms.

[SueJohnson]

For gosh sakes after your long struggle to come off 6 mg pramipexole don't even think about going back on it as you will quickly suffer from augmentation. I know you suffered from nausea on buprenorphine but did you take anything for it. Zofran is one example. I gave you several others.

You never answered whether you had your ferritin tested. If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.

[welschrispy in reply to SueJohnson]

Dear Sue,

I suppose you are right about going back on Premepexole but the prospect of suffering DAWS for the next year or so is truly daunting.

Thank you for this detailed advice about getting a full iron panel. And yes I did take your advice bu it was complicated. Apparently we have a different scale or set of scales here in Canada. There was no mention of Ferritin Level . However I did ask both my doctor and pharmacist to interpret the data and was assured they were "good" . The Pharmacist was particularly helpful but couldn't advise and, as you rightly point out, good may not be good enough. So I am going to get an appointment and ask for another test and ask some more detailed questions about my levels. It's all very slow here because, since Covid, so few of us have a doctors. I get ten minute slot every 4 - 6weeks and I am one of the fortunate few. I will also ask for an electronic copy so that I can send it to you. Thank you for this very kind offer.

Thank you also for the dipyridamole information. I will be sure to take a very good look at that option.

Many Thanks Sue for being so patient and thanks to all who responded to my recent posts

[SueJohnson in reply to welschrispy]

If you go back on pramipexole then when you come off it again as you will quickly develop augmentation, you will start all over again in your recovery. Keep asking your doctor for medicines to cover your anxiety, nausea and depression.

[SueJohnson]

In looking back at you other posts I see you DID have your ferritin tested and said it was OK. However what is OK for others is not OK for us with RLS. What was it? If you don't know ask your doctor and reply back here so I won't keep asking you.

[Merny5]

I’m so sorry that you are still suffering from the consequences of taking a DA. It can take a very long time to recover from DAWS . My last dose of a dopamine drug was about 2 years ago and I still suffer from random bouts of crying and depression. However, this continues to get improve, So please don’t consider going back to the devils drug. You will get better.

[Ticki]

hi hon, I am definitely not a doctor. The only thing that worried me was the tramadol because yours passed. I had argument on that twice so it’s one to be aware of. you’re in my prayers for relief and some peace. don’t give up hope there are other medications out there that may work better for you. ❤️‍🩹