Augmentation questions

[glfngrl]

Know this may not be the right place to post, but since this topic is dealing with augmentation in connection with med use, and subsequent efforts to get drug free, hope some of you will have some input on my current situation.

Am definitely experiencing augmentation, and have most likely been in that state for some time, but as some have stated, it has come so gradually that it has been hard for me to make myself believe that this is what has been going on. For a few months now, have infrequently had to up my med dosage to get relief. (50 mg. Tramadol around 3 pm, .5 mg Ropinerole about 9 pm.) Have used the ropoinerole for about 9 years, adding the Tramadol about 5 years ago. (Am 77 y/o, and first symptoms of familial RLS started with my first pregnancy at age 22. Learned many non-drug coping techniques which kept me sane, but sleep deprived for about 10 years before I finally gave in and started the ropinerole.) In the last 4-5 months, the episodes of increasing my meds, poorer sleep, etc. have become increasingly more frequent, as well as total body involvement. Also have PLMS, but it is mild, and have seen little , if any, change in that.

I am bone-tired now more often than not, so about 3 weeks ago, decided that I would try to gradually d/c the Tramadol, thinking maybe that could be the culprit. Until today, was down to 12.5 mg, while adding .25 mg of ropinerole to my afternoon "fix". However, in the last few nights, have awakened around 3 AM with whole-body RLS, so rather than take more ropinerole and wait an hour for it to maybe work, have taken another 12.5 mg of Tramadol to try to get back to sleep. Was away from home today at 3 pm, and inadvertently took the full 50 mg. of Tramadol.......needless to say, my legs feel great right now!

My questions are these: 1.Could it be the ropinerole which is causing the fatigue, rather than the Tramadol? (The fatigue episodes started about 3 years ago, and are now almost every day.) 2. If it is the Tramadol, how long before I should see a difference after I am completely weaned off of it? 3. If I need to get off the ropinerole, at least for a while, what would you recommend that I substitute for it? Chicken that I am, going med-free simply isn't in the cards......too many years of my life already spent in hot baths, exercising on the floor, half asleep-awake with jerky legs, miserable car trips, etc.!
(Have had heart and other things checked, and no one can pinpoint why I am fatigued. Have had 3 surgeries since mid-January, with no problems with being put to sleep, so general health is very good.) Would attribute the fatigue to my recovery from all that, except that the fatigue was there before the surgeries. Question 4. Has anyone noticed a change in the effect of regular exercise when augmentation began? Nowadays, if I do more than half my former routines, RLS big time that night.

I ask these questions of you guys because my doctor is learning about RLS from me, and goes along with whatever changes I think I need to make. (The only suggestion she has made on her own is that I try Klonopin, which I do not want to do.) I am leaning toward using an opoid to replace both the Tramadol and the ropinerole for 2-3 weeks, then trying my regular dosage of them again. However, am sort of afraid that then I won't sleep, either!

Sorry for the long post, but I am sort of at a loss as to the best path to take at this point - know for sure the one I am on has suddenly become a dead end.

Thanks, and good luck to those of you who are already making changes.

Jane in GA

[stjohnh]

Jane,
The ropinirole induced augmentation is the most likely cause of your fatigue. You will need to get off it. This is a very unpleasant thing to do but must be done. The most palatable way is for your doctor to give you an opioid to help you with the torture of getting off the ropinirole. After withdrawing from the ropinerole you basically have two choices, 1. Restart a long-acting dopamine Agonist such as neupro patch, or 2. Transition to chronic opioid use, most likely methadone. There are pros and cons to both of these, however neither is a wonderful solution. A really good solution doesn't exist. However either of these should be considerably better than what you have right now.

Sleeping problems go along with advancing RLS. No matter what you do to control the jumping legs, you will probably have insomnia that requires separate treatment. The insomnia is difficult to treat, most doctors do not recognize that standard prescription medications for insomnia do not work for most people with RLS.

[Rustsmith]

Jane, I split your post to create a new topic. If you don't like the Subject, feel free to edit your first post to change it.

Holland has given you quite a bit of good advice.

As an answer for your question 4 on the impact of augmentation upon exercise, I can only offer my personal experience. I spent all of 2015 and the first few months of 2016 augmenting on Neupro and then pramipexole (again). I am also a competitive runner and continued to compete during this period. I can only say that 2015 was one of my most successful years for quite a while. So, in my case, neither augmentation nor severe insomnia that I was experiencing (avg of about 3.5 hrs/night for a year), significantly reduced my fitness levels. However, I also have to admit that I also tried to use a number of those extra waking hours each day on training because I was chasing a couple of personal goals.

As for sleep, have a long discussion with your doctor about how much you are (or are not) sleeping. He may not be aware of how bad things really are. Addressing the augmentation and changing meds for your RLS will help, but may not fix the insomnia. You might want to consider using something such as gabapentin to combat the insomnia, which seems to work better for us than traditional sleeping pills. You should also consider having a sleep test done to see if you have something going on beyond the RLS. Several of us here on the board also have forms of sleep apnea that cause micro-awakenings during the night (that we are not aware of). When they are not treated, these awakenings disturb the sleep cycle and result in fatigue and sleepiness even though you may think that you are getting enough hours of sleep. In my case, I found that I was waking up ever six minutes or so, either from the RLS, PLMS or my form of sleep apnea. I was "sleeping" for 9 to 10 hrs a night, but was never getting the restorative type of sleep that I needed in order to be able to function during the day. I now sleep with a CPAP machine and use gabapentin for the insomnia. I can only get 7 hrs of sleep each night, but feel better than I did before I started the RLS meds and using the CPAP machine. BTW, I am very much NOT the classic sleep apnea patient, i.e. overweight, big body male.

[badnights]

Hi Jane
You mentioned episodes of fatigue - - are these sudden-onset episodes, or are you always fatigued? Do you have a particular reason for thinking your fatigue is caused by a medication, and not by years of poor-quality sleep? Ropinirole can cause sudden drowsiness, but I don't think a side effect like that would start after 6 years on the medication. Tramadol can cause drowsiness but I don't think that would occur as sudden episodes. I suspect you're chronically sleep-deprived and no longer remember what a normal night's sleep should feel like.

The insomnia that comes with WED/RLS seems to respond to the alpha-2-delta meds, as Steve mentioned. These are gabapentin/Neurontin, gabapentin encarbil /Horizant, and pregabalin/Lyrica. (The alpha-2-delta meds may indirectly lower the levels of glutamate in our brains. Glutamate is an excitatory neurotransmitter that recent research suggests is overabundant in RLS/WED brains.) You might want to give one of those a try.

The change in the effect of exercise could be because you've become more fatigued. Your body lacks the resources to recover the way it used to, which like any stressor can increase WED/RLS symptoms. Steve's suggestion of a sleep study to rule out other problems is a good idea.

I am curious as to why you say you're augmenting. You don't mention any particular symptoms of augmentation.

[glfngrl]

Morning All,

As to why I am augmenting: symptoms have gone from early evening to anytime I try to relax (sit to read, for example) after about 11 AM. Also, am awaking in the middle of the night often with symptoms, as well as sometimes being aware of them as I wake up. Have experimented with using half-doses of either the Tramadol or the Requip during these episodes, without a lot of success. However, I can substitute with small dose of an opoid, and this usually calms my legs so that I can get back to sleep, but then often re-awaken after an hour or two. In the past 2-3 weeks, sleep has been a roller-coaster, and am thinking it is time to change my whole approach, med-wise. (I count myself lucky that I have had about 11 years of decent sleep with only .5mg of ropinerole, and then adding the 50 mg. of Tramadol mid-afternoon.) Itching has become a real problem, however, and am convinced one or the other is the culprit.

As I mentioned in my original post, I have had 3 surgeries (with anesthesia) since mid-January, and of course, jumped through all the pre-op hoops as to general health -nothing out of the ordinary. My anesthetists were apprised of the RLS/PLMS, and I had NO problems with amped up symptoms because of the anesthesia, but could attribute that to the opoids I took for 2-3 days . Has been 4 weeks since the last procedure, so cannot think I am having any residual fatigue from the surgeries.

Thanks to all of you for your input! I realize that a sleep study would rule out apnea, but the big issue with that is that no way would I "sleep" if I were not allowed to take my RLS meds, so what would be the point?

I am going to visit my GP and discuss all of this with her. I really want to shuck the ropinerole/Tramadol cocktail, at least for a while. Going with the gabapentin sounds like a good option, and have left-over opoids for break-throughs, if needed. She had prescribed levothyroxin a few months ago, and upped the dose recently, as tests show me borderline thyroid functioning, hoping this could be the underlying cause of the fatigue. So far, this has had no positive result for the fatigue, but of course, has improved other issues.

Will re-post after the GP visit. Good luck to everyone.......after 55 years of this junk, I can empathize with all of you. I have lived with some aspects of RLS ALL my life, as my grandmother and mother both had it (neither were ever officially diagnosed, or treated); my daughter has also been on meds for several years, and one of my grandsons has occasional episodes at 25. As an aside, both g.mother and mom's symptoms subsided as they got into their 70's! Hmmm.........makes me wonder just how much long term affect our meds may have.

Jane in GA

[glfngrl]

Update: coincidence, or divine intervention? LOL As I have been pondering the decision to ask my GP to let me try gabapentin as a means to help me d/c the ropinerole, the problem was suddenly a moot point. On Tuesday, on the way home from my weekly golf outing, I began to notice a strange tingling, itching, burning sensation along one side of my neck. At first, I attributed it to getting a bit too much sun (high 90's here in Ga. right now). Applied anti-itch cream several times, but symptoms seemed to worsen during the night. About noon yesterday, a light bulb went off - after careful examination of the area, decided I had best hurry to my GP, to rule out shingles. Well, she ruled them IN! So, along with the anti-viral med, she also prescribed gabapentin as a precaution against long-term nerve damage. We also had a long discussion about a new RLS plan to include at least temporary use of the gabapentin, while tapering off the ropinerole completely. At the same time, am going to take 25 mg. of the tramadol 3-4 times a day. (Would love to use Tramadol ER, but my ins. won't approve it, and my budget simply cannot absorb almost $200 o/p.....druggist suggested just taking the 25 mg several times a day, but not at night, as tramadol can have moderate bothersome interactions with the gabpentin. I also have left-over opoids which she suggested I use if get severe break throughs as I transition.) My GP's step-father also has severe RLS, and she has recently completed extensive research on newer info concerning treatment options, so I think I am in excellent hands.

I did experience some strange sensations last night after my first gabapentin, but also took the ropinerole at the same time. Doc suggested taking the ropinerole 2 hours before taking the gabapentin, but I forgot, and was afraid not to take it at all. But....the strangeness wore off after about 45 minutes, and I slept extremely well for about 6 hours. Woke up a bit "foggy" and groggy, but will adjust dosage times of both meds to go to sleep earlier from now on. My goal is to stay off the ropinerole for at least a month, then re-introduce it and gradually come off the gabapentin, while continuing the multiple low doses of tramadol during the day. Then, after say 3 months, take another, shorter hiatus from the ropinerole. Hopefully, by alternating
methods of treatment, I can lessen the chance of augmenting again, as well as withdrawal side effects from any of it. My GP is willing to guide me in any way that I want to experiment, and has asked me to call her often to report progress, or lack of it.......I thank God for her!

If any of you can think of other ways to tweak my plans, feel free to suggest!

[ViewsAskew]

Sounds like you are in a very lucky place with your doctor!

[Polar Bear]

glfngrl - how wonderful that you have a cooperative GP who is willing to learn and indeed has some experience of it within her family.
Coindicence or divine intervention indeed that the decision of if/when to try gabapentin was taken out of your hands. Congratulations on your 6 hours sleep and hope that tonight is also good.

[JTDoran2]

Two years ago, I experienced augmentation when I reached 0.5 mg of Mirapex per night. My doctor prescribed a long, slow reduction in the Mirapex. I went down to 0.375 for a month then 0.25 for a month then0 .125 for a month then 0.065 for a month. At that point, I went cold turkey for two weeks. We controlled symptoms along the way with ice packs for 30 seconds on symptomatic feet. We then reintroduced 0.125 Mirapex with 100 Mg of Gabapentin. This works well most nights. When, it does not, I rely on my ice packs and sometimes running in place until my heart rate reaches 85-90 bps. I am also experimenting with creams and foot wraps with limited success.

[ViewsAskew]

Thanks for sharing, JT.

[badnights]

Hmmm - this doesn't sound like a viable long-term solution, but it's nice while it lasts! You have room to raise the gabapentin dose quite a bit, as long as side effects are tolerable, but I found it to be of limited effectiveness - it stilled the nasty sensations, but didn't take away the urge to move, so I would lie in bed kick-kick-kicking, peaceful but wide awake. The combination with the Mirapex probably keeps that from happening, siince the Mirapex can still the urge to move.

Keep a careful watch on yourself for signs of renewed augmentation. It almost always happens again. But I hope this combination works for you for a long long time.