Vote, Tell me what to do

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Vote, Tell me what to do

Post by richviv »

It is almost always easier to stay where your at than to open and go through another door. What is in the next room is uncertainty.It seems not impossible,possibly even likely, that all medications have 'side effects. Some will not help at all and the ones that do help all have a downside, augmentation, dependence- on and on. My daughter, who has been given (sometimes ,but not always, by her own doing) ,at times, a life in hell, tells me, that any chemical that works by effecting the brain, eventually will require more for the same effect and undoubtedly have some sort of unpleasant side effect.
I am undoubtedly experiencing the downsides of ropinirole. which I do not mostly remember (probably) before taking ropinirole-strong,frequent day time symptoms, aching arms,if i unintentionally or intentionally miss a dose all hell will break lose (I should post a video because it is really almost unbelievable what happens-my legs move violently except if walking) etc., but my nights are relatively symptom free. I worry about the longer term effects. I know people who have taken certain pysch meds and now have unchangeable unpleasant side effects (eg. constantly twitching his neck and head-he is miserable ,but has no choice but to cope).
Another factor is money. The money from the last bank I robbed ( by threatening to turn up the volume on a Tom Jones song) is running out. Another factor is even Dr. B, Mayo Clinic, do not help everyone, and their arsenal is only stocked with those darn 'brain meds" .
So tell me what to do . Vote for A or vote for B
A. Keep taking 6 mgs (sometimes 8) of ropinirole OR,
B. GO to Mayo Clinic (or like), be probably given an opiate so I can stop the ropinirole, and start taking some other RLS med or
C. Stop being so attention seeking, grow up, make up your own mind, and do not listen to Tom Jones

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Re: Vote, Tell me what to do

Post by ViewsAskew »

Well, definitely NOT C. I'm a strong believer in a multi-pronged attack, however :-), so you still have options.

If I could do it all over again, here's what I'd do.

1. Spend my meager pennies to get to a doctor who "gets it" much sooner. I spent a few years dithering around, trying to figure it out, get someone to help, thinking I couldn't afford it, etc. And, while I did, I spent more in copays and in emotional aggravation than I did in finally going to California. The emotional benefit of having a doc who gets it is sorta like those old commercials about the credit card - priceless.

2. NOT take any habit forming drug all the time if I could possibly avoid it. Whether kratom or methadone or benzos, stopping habit forming drugs is HARD. Not all of us get dependent and fortunately few of us get addicted, but dependency can be miserable. If I were closer to the twilight years of my life, I'd dive right in. But as someone who was just approaching the middle years when I did, I'd rather have kept this complication away. So, once augmentation was over, I'd stop the opioid and start searching for other solutions. Once I found ones that worked, I'd rotate them, as I do now.

3. When I found that doc, I'd use an opioid to get off of the DA (for me, pramipexole), then stop the opioid after about a month and see what my level of symptoms was. I'd be miserable, but I think a period of no drugs may be helpful to our brains. A few weeks of hell might be very helpful.

4. Once I wasn't augmented, I'd carefully try the things that hadn't worked. I have a sneaking suspicion that some drugs just can't work when augmented or until we stop taking certain drugs and reset our receptors, so you don't always know what does and doesn't work. I'd also try medical marijuana. I would likely try kratom - my concerns mostly about consistency of dosage because its unregulated. I'd try diet. (I already have, but, again, doing things outside of augmentation and after a detox from everything may provide different results.) I'd ask myself if I could possibly have any other conditions that worsen WED/RLS. I know mine is primary and genetic, but since there are multiple genes and you can have primary and secondary at the same time, it's worth investigating. But, I'd try all the options I could.

5. I'd get an infusion - if at all affordable - much sooner.

6. I'd love myself more. I'd cut myself more slack. I'd do whatever I could because my life is worth it and wasting it living through augmentation was beyond miserable. Story: about 6 months after augmentation was treated and I'd finally withdrawn from benzos (it took 6-7 months), we invited some friends over for dinner. We hadn't seen them in a long time. During dinner, they asked what had happened to us and why we hadn't been around. I wasn't sure what to say when my husband said, "We just lost a year of our lives." In that moment, I realized he was right. When I was in it, I truly didn't see just how hard it had been. And, I certainly didn't recognize how hard it had been on him.
Ann - Take what you need, leave the rest

Managing Your RLS

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Re: Vote, Tell me what to do

Post by Rustsmith »

I agree with everything that Ann has said.

Of your three options, B is the only approach that I see is realistically gives you a chance for to get a life.

To me at this point in my treatment, I am starting to see the wisdom behind the approach that Ann uses where she moves between different medications. She has her reasons based upon her past. For me, it has more to do with providing me with options for the times that I travel. There are countries that I visit that I would be very nervous trying to "import" a large enough supply of methadone to cover my trip (with a couple more for contingency). Similarly, if I ever move to medical marijuana as a form of treatment, would not be comfortable taking it to another state where MM was not legal. Methadone (with the paperwork) would be an option, but it would be much simpler in both cases to be able to switch to a DA for a few days.

Of course, the problem with this sort of thing is that in order to self medicate you must have a good, established relationship with a physician who is willing to trust you. The doctor is going to need to provide you with "overlapping" prescriptions or else cycle between medications where you create a stash and then switch to another drug for the next script. Many doctors simply are not comfortable with giving this much freedom to their patients.

Augmentation Evaluation

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.

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Re: Vote, Tell me what to do

Post by sleepdancer2 »

Ann''s words are profound! Everyone struggling with this should read them.

I can't really vote for any one of the options. I can vote against A if you are augmenting. And caution you to wean off the med. At lower doses I think it's considered safe to just stop a dopamine agonist. I abruptly stopped Mirapex (my bad) from what is now considered a high dose and it caused a permanent neurological glitch. I remember the utter dread any time a med change loomed. The weeks weaning off one and titrating another were awful. I tended to stay in a bad situation much longer than I should simply because I knew I was getting ready to go through hell. Here's where I see some merit in your option B. I wish I hadn't suffered through the switches. I wish I had considered opiates an option. I was so daggone determined to not risk getting hooked on something that I suffered unnecessarily. If I had it to do over again I'd use something to help my suffering - with caution of course. I am really sold out on using my TENS Unit. It took a while for it to become effective - I think when still under the effects of augmentation it's too much to expect anything to be very effective. I use the TENS before bed, but if you have daytime legs problems, just maybe it could help you. If I'm traveling I use it right before the plane or train ride and it helps the trip be more tolerable. As for option C, Gee thanks. Now I can't get "It's Not Unusual" out of my head. :D
My Augmentation Sleep Video:

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Re: Vote, Tell me what to do

Post by Sojourner »

I'd vote for B as is sounds like a reasonably alternative to A and C. I think getting more "qualified" information is usually a good thing. Hopefully, Mayo can provide you with that as well as a possible plan. Doesn't mean you have to act on that info or embark on that plan immediately as opposed to giving it some thoughtful consideration and seeing if it makes sense and something you can see yourself getting behind. Not listening to Tom Jones is always a good idea though!
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