Going through hell again

[Tennwalker1]

Hi everyone it's been a long time since I posted. Things were going pretty good. I've been keeping up how everyone's doing. Looks like we have some new people on BOY,that are really facing some trials. Back in February i took Lyrica 225 mg evening with oxycodone 5mg. Bad leg problems. Now at the on the end of March, I started horizant 600mg at 5:00 and Tramadol 2-50mg one at 6 and one at 8. Legs are still terrible.Talk to doc yesterday, He said add a horizant at 4 and another at 6, then a tram at 7and 930. And I am so miserable. My left leg hurts so bad. What can I do? I was weaned off prampexerol about a month and a half ago. I just keep walking, stretching, ankle pumps. Could I be augmenting? So sorry,but at my wits end. Please can someone shed some light on what's going on.? I just get so tired of walking and it doesn't quit. If the walking would bring relief I wouldn't mind doing it. But nothing seems to help anymore. I don't really walk I do more staggering than anyting.i hope you all can help. Thanks so much in advance.

Ps. I hope this makes sense. I'm pretty groggy from the 2 horizant. And the two tramadol tonight. Oh dear

[Nottsali]

You poor thing, sounds like you are having a tough time. I have nowhere near as much experience as others on here, but doesn't it take a while for the body to adjust to any increase in gabapentin doses? I'm working on giving any increase a couple of weeks to settle.

Really hope you get some relief soon, and I'm sure some of the lovely people on here will have some advice for you.

[Tennwalker1 in reply to Nottsali]

Thank you so much Nottsali for your kind words. I was weaned off the Mirapex in early Feb that I had taken on and off since 1991. It was my favorite.

[Joolsg]

Oh that’s awful. If you only dropped the last pramipexole 6 weeks ago, you could very well still be suffering DAWS.

It took me about 6 months after taking the last dopamine agonist to find relief.

I would also take the Horizant in one dose an hour before bedtime as it is very sedating and will help RLS and sleep if taken later.

You say OxyContin 5 mg didn’t help but you were still on pramipexole when you were taking it. Also you need to maintain a steady dose of OxyContin over 24 hours to avoid ‘dips’ and mini withdrawals.

I would say stick with tramadol and Horizant but change the timing- if RLS is acceptable during the day, only take the meds at night.

DAWS can last for months so give your body time to get over the pramipexole withdrawal.

I’m sure the Horizant will start to help soon.

I do remember thinking I would never find something that helped after Ropinirole withdrawal but after 5/6 months the meds started to settle and I now get good nights.

I presume you are in the USA ( Horizant is not available here in the UK)? Is cannabis legal in your state? Cannabis could help on an as needed basis until the DAWS symptoms settle.

[Tennwalker1 in reply to Joolsg]

Thanks for your response. Is Lyrica a

DA? Yes, I'm in US. And cannabis is legal. I see the neurologist July 25. That seems like years away. After I was weaned off the Pram I had 21/2 months of good sleep. My legs started going crazy again then we started trying new medication. I had a nurse practitioner that I was seeing and she was great she would listen and try to understand what was going on and help me with the meds. And then she left and went to Kansas City. I almost went with her. Thanks again for all your help.

[Joolsg in reply to Tennwalker1]

Lyrica is the brand name for pregabalin ( an alpha2delta ligand). It’s not a dopamine agonist. It’s similar to Horizant.

You can change the time of your meds to see how it helps and then report on results to the neurologist.

Don’t consider another DA though.

[Tennwalker1 in reply to Joolsg]

Thanks, you're right no more DA's for me. Do you think that horizant 600 mg at 4pm and again at 6pm is okay? Thats what I did last night. I also have two tramadol 50 mg to take. I think timing is pretty important with these meds. Thanks again.

[Joolsg in reply to Tennwalker1]

I would take the Horizant all in one dose an hour before bed - it will sedate you and the side effects of dizziness and balance loss will not be as noticeable.

Then take tramadol on an as needed basis ( if you wake in the night for example).

You have a few weeks before you see the neurologist so adjust the timing to suit your individual RLS.

[Tennwalker1 in reply to Joolsg]

Hi Joolsg

Thanks for you very sound advice. You said take the 2 horizant 1 hr before and Tram as needed. If I wait until 9-9:30 to take horizant I'm already in full-blown rls. I doubt the horizant would even help me, given my rls is screaming by that time. I truly need something at 6-6:30 to get me through evening hours, then put me out for bedtime. I'm really messed up. Haha. I think my case is one for the books.

I'm hoping to get blood work done at neurologist office, and he'll check some other things. Thanks again joolsg.

[Hidden in reply to Joolsg]

I have never heard of horizant, most sleeping tablets are known to make RLS worse!!

[Joolsg in reply to Hidden]

Horizant is an alpha2delta ligand- a more absorbable form of Gabapentin. It’s only available in the USA. Zolpidem is a sleeping tablet that doesn’t make RLS worse BUT like all sleeping tablets should only be used very occasionally ( eg when going through dopamine agonist withdrawal).

[involuntarydancer]

That sounds like torture and I really feel for you. As usual, I second everything Joolsg says. When I came off pramipexole it took months. I now wonder if part of the problem is that lack of sleep actually seems to exacerbate rls (in a cruel irony) so it is important to try and find something that allows you to get some sleep. Months after I took the last pramipexole I finally persuaded my GP to prescribe oxycontin. Initially it took 30mg to quiet my legs but I started to recover almost as soon as I got the sleep this allowed. I wouldn't need anything like that dose to cover symptoms now (I don't take oxycontin any more).

It's not for everyone, given its dubious legal status, but I find kratom very helpful, better than opioids and with fewer side effects. It's possible to take on an 'as and when' basis and it's also easier to discontinue when you finally get symptoms under control.

Don't neglect your iron levels. Raising iron helps at least 50% of sufferers. Get your serum ferritin levels checked and get the actual figure not just that you are 'normal'. If the figure is below 100 start a supplement.

Things will improve. This is only the beginning. You won't know yourself in a few months time. It takes a lot of tweaking and experimentation to find what works for you but there is a solution out there. Keep the faith and good luck!

[Tennwalker1 in reply to involuntarydancer]

As usual more good advice. I've taken notes from yous and joolsg suggestions and wrote this down and will present it nicely to the Dr. We have to be gentle with the Dr's. Dont want to appear more knowledgable then they are. Thanks again.

[btthemd]

I can totally relate. I have been taking tramadol for several years with good results, now they don't work at all. I have tried everything else without any results. Sleeping less than an hour a night. One hour is good sleep. Looking for doctors who are willing to try different meds but it is hard to find such. I hope you can get some relief. I will post if I come up with an answer.

[Tennwalker1 in reply to btthemd]

Oh, so sorry to hear you're having such a problem finding the right medication. I know exactly what you're saying it can be so frustrating. Yes I would very much appreciate you letting me know what you find out or if there's a so-called "cocktail" out there that works for you. Thanks so much.

[Hidden]

God you are taking so much, you definitely are augmenting!! Way too many drugs and if you go on the RLS website you will see that OxyContin and lycria are so not a good idea!! No doctor should prescribe them!! Tramadol and lycria yes but am not sure about the rest. Maybe tell you doctor about te drugs that make RLS worse and show him the website? Hope this is helpful and you don’t think I am being bossy 😮😊

[Tennwalker1 in reply to Hidden]

Who are you replying to Tennwalker1 or btthemd? Or both?