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oceanwalker wrote:Oh thank you so very much Ann:) I will PM her and again..many thanks.
I also know I am augmenting.
Even though no WED/RLS I still took my daily Rx of pramipexole ; so hmm
Anyways again many thanks Ann and Hope and Pray you're doing fine.
I hope she sees it. If she doesn't respond, let me know. I can try to contact her privately.
Thanks for asking...Like most of us, I'm getting by. I can't imagine what "doing fine" is anymore, lol! That passed me by a looooong time ago. But, like most of us here, I do the best I can with what I have. It's all we can do. And, in the context of really terrible things, like death or a terminal illness, I'm doing great!
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
You are so so right Ann!!! We are doing ok. Getting by is more than we could ask for. Your attitude is awesome:) Anyways just wanted you to know..I faxed, emailed 2x and will call on Monday Dr Lawrece Pauluk. Didn't wish for you nor Beth to think I was not doing any footwork. LOL Praying and hoping this will all help. Plus your help Ann;)
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Am augmenting (mirapex) My doctor's been extremely helpful and understanding. It's a God Send. I guess in one way we are both learning. Saw my doctor today and we discussed weaning off of .37.5 (one and a half tablets of .25 mirapex) He gave me a large amount of emtec (tylenol&codeine) and of course wishes to see me in 3 days or so.
I had endured this before on ropinirole without the help of my doctor as I have now. Don't believe the doctors (all of them understand) I gave him plenty of information and he obviously read it and has a new found understanding of WED/RLS Thank you all!
Suppose we are all learning together.
Anyways I would just like to know if this sounds familiar to anyone...on getting off of the mirapex? The plan is to then start ropinirole in very small doses and let us see what happens.
Oceanwalker - it's a lot of Tylenol to take, but if your only opioid choice, better than none.
I wouldn't start ropinerole again, however. The algorithm says that once you've augmented multiple times that you should use DAs again.
I think it's possible to take it again....but that you need to take frequent breaks from it. Say, every 2 weeks, stop for 3-4 days, use an opioid, then go back to it. That might work for quite awhile - years even. But, if you go back to ropinerole now and don't have a plan to stop it, you will augment again. And, likely, more quickly each time.
Good luck with it! Congrats on the doc understanding.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Hello Ann and thanks so so much for your reply. I just didn't know if you meant? *In 2nd Paragraph* "I wouldn't start ropinirole again, however. The algorithm says that once you've augmented multiple times that you should use DAs again?? is it should or shouldn't Ann? so sorry ...it's all so confusing.
Of course this is all confusing and I need to go back to check how I did it all before.
OMG this is tuff!
In any event the doc and I are working together and that's a huge! step!
OK I understand I believe... duh lol. With DA's I will continue to augment..and the idea here is to use something else? Sorry for the confusion Ann. My mind is cluttered with information and the banks just are overloaded.
Sorry to ask...will you explain this to me step by step?
I so thank you and you don't know how appreciative I am.
[took in too much information yesterday. listening to some Dr B's voice chats, reading this/that. One can never learn enough]
When the DAs do not work anymore, you have two primary treatment options with your doctor.
1. Try the drugs in the alpha delta ligand catagory - gabapentin, pregabalin, etc. 2. Use opioids.
There is a third option, but few doctors use it. I think, however it's brilliant. And that is to alternate a DA for a SHORT period with an opioid for a SHORT period. You never augment that way, you never become dependent on the opioid that way. So, a week or two on the DA, a few days on the opioid. Back and forth. I did this for over two years very successfully and I augment very quickly - I took the opioids for 2-3 days and the DA for 1-2 days because I augment so quickly.
If these options do not work or you do not like these options, the other option is to try using the legal drugs that are available, such as kratom. That's another decision that some people prefer.
Each of us had to do the research and find a method we're comfortable with. Not always an easy decision.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Hello all and it's been a bit since I posted an update. In the meantime I am seeing a different doc! He sees me each week and is very very interested in WED/RLS etc.
I am now taking the max for *pain (so to speak) of *gabapentin (neurontin) and it's been a battle but to date the WED's are at peace.
He's been (and still is) testing many many things & I so appeciate it.
This doc has eliminated the dilaudid, kept the emptec (aka..Ty#3 with no caffeine) upped the gabapentin a lot, as well added diazepam for a short while. Obviously diazepam & rivotril are in same family & have similar properties. He will eliminate diazepam soon and use only the rivotil.
His tests are extensive and he's set me up with an appt. with a neurologist.
I am so happy (to date) with this new doc and hoping and Praying the WED/RLS won't rear it's ugly head anytime soon.
WoW I can once again sit at the compute, sit and read, watch tv, and most importantly SLEEP!!!! OMG !! I slept from 10:30 PM to 5:30 AM and wow I was flabbergasted !! how wonderful this was. The new doc even spoke to a neurologist about me & read the information I gave him from our site.
Yes and thank you Polar Bear; I am so happy plus my husband and I cannot believe it ! I understand a lot may be the gabapentin....in any event it all doesn't matter...as long as I stay this way. In the meantime (no matter what happens) I can once again enjoy the utmost luxury of sitting at a computer *normally* and most importantly SLEEPING! (obviously, I still worry about the symptoms returning...but will enjoy what I have)
I always Pray for all of us to achieve ""NO WED/RLS Symptoms"" always...
Wishing you, Anne, Beth everyone here a very Merry Merry Happy Christmas.
Sincerely, Oceanwalker
[PS: I most definitely will keep you all posted/as we are all important & we learn from each others' posts]
Oceanwalker, are you experiencing any side effects from the gabapentin? When my doctor increased my night time dose from 300mg to 900 last summer, it took quite a while for me to quit getting dizzy everytime I stood up, either from getting out of bed of from sitting for a while. It has either gone away or I am used to it now. For me, the increased gabapentin was definitely responsible for getting rid of my insomnia and also seems to have improved my sleep quality. Before, I had to get 7-8 hrs of sleep each night to avoid becoming a zombie. It didn't matter when I got to sleep, I needed the time. Now, I go to sleep around 10P each night and get up anywhere from 2 to 4A. The best part is even with 3 to 5 hrs sleep, I feel more rested than before.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Your attitude is awesome:)