Getting off pramipexole etc.

[riverrunner13]

I have about given up on physicians. They have made my life utter hell with the drugs. I had to go cold turkey off of Requip after being on high doses for over 5 years. Why? I was out of town and could not get in for an office visit...no refill. I truly thought about dying to end the misery but I figured I am through the first few days..hang in there and get off this horrid drug. I made it and never want to go through that again. I will take a pain med withdrawl any day over DA withdrawl Unfortunately I had to do it all over again with Mirapex since that is all the Dr would prescribe and I had to have something to sleep. The the side effects kick in for that drug...here we go again. I have tried every pharma drug there is. The neurotins drive me utterly crazy, I cannot take them. The DA's give me horrible side effects and I augment very quickly. The only thing that works well for me are some of the opiates. I am allergic to morphine, methadone and codeine but can handle hydrocodone and oxycodone but try and find a physician to prescribe that? Not now. I have taken in my medical records, literature, papers...does not matter. No opiates prescribed here. I have been to pain specialists, neurologist, sleep specialists and they all want me to go back on DA's or gabapentin. I will never, ever go back on those drugs again.

Luckily I found the forum here and read about kratom. it made sense and I tried kratom and it works very well for me. It has taken quite a bit of trial and error and time to get the dosage right but I think I have it dialed in. Now at least I can sleep for a few hrs at a time. Unfortunately it does not last more than 3 hours for me but at this point, 3 hours is wonderful for me. I probably will never sleep a full 8 hours again in my life unless I have another surgery and get pain meds. I know every one of us are different. What works for one person does not work for another but I am so happy to find out about kratom. It has made a world of difference for me.

What I can say is getting off of the DA's was the most horrible thing I have been through and yet the best thing I have done. I feel so much better mentally and physically being off the pharma drugs. The kratom is working well for me for the last 6 months or so and I am staying steady on the same dose and not having to increase any. If you can get off the pramipexole...do. I hope you can find a regimen that works for you. I am blessed the herbs are working for me.

[jul2873]

Hi RiverRunner,

I'm so glad kratom is working for you. I'm about ready to start my third year on it, and it still works well for me. I also usually get no more than a 3 hour stretch of sleep at night, although sometimes, if I take a half tsp. of agmatine before the kratom, I'll sleep for as long as five hours. But the three hour stretch doesn't really bother me anyway. I keep little cups of kratom and orange juice made up in the refrigerator, and just get up, walk downstairs, and drink one. Usually I can then go right back to sleep.

I have had very little to do with doctors. The neurologist I saw prescribed Neupro, but I never took it (too afraid). My GP suggested that I put soap under my mattress. Yeah, truly . ..

Hope kratom continues to give you relief. As far as keeping it legal, I support the Botanical Legal Defense Fund, which has been very active in educating the state legislatures that are trying to ban it. https://www.botanicallegaldefense.org/ There is also a good Facebook group that keeps up with all of the legal aspects of kratom: https://www.facebook.com/groups/KeepKra ... l/?fref=nf

[badnights]

oh riverrunner what hell you've been through! Like jul2873, I'm glad you found out about kratom.

Where do you live, if you don't mind saying?

You might instantly respond with "impossible" when I say this, but think about the alternatives.... Can you move to somewhere else, where it's not so hard to get prescribed hydromorphone/oxycodone for WED/RLS? I'm on hydromorph contin. I'm in northern Canada. It's hit and miss in Canada generally depending on the physician or perhaps the clinic culture. In the States, opioids and the addiction hype and fear of being sued seem to be an order of magnitude greater than here, but it's not the same everywhere. Some states have more stringent laws. Some doctors are more stringent than others. The surest bet is to move near one of the Foundation's certified RLS Quality Care Centers (check the Foundation website http://www.rls.org). Those people know that augmented refractory WED needs opioids, that nothing else works, and they treat us, they don't harm us.

I probably will never sleep a full 8 hours again in my life

I am positive that you will, that things will improve dramatically at some point. You are simply untreated right now. With the right treatment, you can be fine. Maybe you will still have issues, but you will be functional and it will all be bearable.

It's hard to do things like find a good doctor and uproot your life when you're barely hanging on, brain-dead from profound chronic sleep loss, but realize these two things:
1. there are doctors who understand refractory WED and will treat it with opioids, and
2. you can get your life back if you're properly treated.
Once you are convinced of those two points, getting yourself seen by one of those doctors becomes more important than anything else in your life - because it;s the route to getting your life back.

I hope the kratom gives you enough sleep so that you can successfully hunt down a real WED/RLS doctor.

[dgarmaise]

Hi. I am just back from seeing the pain doctor at Bumrungrad Hospital in Bangkok, Dr Nuj. Nice woman. She did not know a lot about RLS, but she listened to what I had to say, and took the reference materials I offered her, and she agreed that I need an opiate while I am weaning myself off the DAs. The only bad news is that the hospital ran out out of oxycontin, so I am stuck with morphine. Oh, well. She did no know whether and how I should taper down on the Neupro and the gabapentin. She was supposed to consult my neurologist and then get back to me today, but that did not happen. I am starting the morphine tonight. A 10mg pill every 12 hours. I have been on 4mg of Neupro for about a month. Does anyone know if I need to taper down? As for the gabapentin, I have been taking it for about a month also, increasing the dose from 100mg to 600mg (and then back down a bit). Do I need to taper down on the gabapentin?

[dgarmaise]

I should add that before starting the Neupro patch four weeks ago, I was on pramipexole for years.

[Sojourner]

Not sure about the Neupro, but I would definitely recommend tapering down from the gabapentin. In many respects you were not on a large dose of gaba so that should lessen the tapen a bit. But, unless there is some big hurry, I would not rush the taper. I'm cycling thru gaba for the second time after having some good success with it. Think my taper lasted about 2 to 3 months and I did have some nervousness and anxiety associated with the taper. But, got thru it with just a few bumps and bruises. Good luck.

Wishing all who visit here some peace this night.

[dgarmaise]

OK, I will do that. But not only was I not on a large dose, I was also only on it for a month.

[Yankiwi]

This discussion board is wonderful how it puts people from all over the world in touch with questions, suggestions, advice and commiseration from those who experience this awful disease.

[Sojourner]

OK, I will do that. But not only was I not on a large dose, I was also only on it for a month.

I think not being on a large dose and not being on it for just a short time can figure into your taper. But, I would still error on the side of doing things slowly. Sometime it takes your body a few days to know that, "Hey, where's that medicine I've been taking?" So upon stopping a med cold turkey or too quickly, you may feel fine for a few days and then some aftershocks may hit you unexpectedly. I know some people here have stopped many different kinds of meds cold turkey or on a quick taper. Some without lots of problems and some with quite a bit of pain. Our bodies and psyches are all different. If you can, talk it over with you doctor. That's always a good idea. Usually, there is not an overriding reason to avoid doing things slowly and with caution. Just my opinion.

Wishing all who visit here find some peace this night.

[dgarmaise]

I am tapering down on gapapentin. I should have done the same with the Neupro patch. I stopped cold turkey and paid a price for it. So, I went back up to 4 mg for a day and have now started to taper down. I read on one site that I should go to 3mg for two days, then 2mg for two days, then 1mg for two days, then stop. (Remember that I am on 10mg morphine twice a day.) I think that might be too fast a taper. Any comments? By the way, I can't get any 1mg patches in Pattaya. A pharamacist said the way around that was to use the 2mg patch but only use half of it. Not cut it in half; that would ruin the patch. But remove just one of the two pieces of plastic on the back. Anyone every hear of that?

[Sojourner]

I am tapering down on gapapentin. I should have done the same with the Neupro patch. I stopped cold turkey and paid a price for it. So, I went back up to 4 mg for a day and have now started to taper down. I read on one site that I should go to 3mg for two days, then 2mg for two days, then 1mg for two days, then stop. (Remember that I am on 10mg morphine twice a day.) I think that might be too fast a taper. Any comments? By the way, I can't get any 1mg patches in Pattaya. A pharamacist said the way around that was to use the 2mg patch but only use half of it. Not cut it in half; that would ruin the patch. But remove just one of the two pieces of plastic on the back. Anyone every hear of that?

Can't help you with the patch. But, you have hit on at least one aspect of tapering down which can be difficult. That is, finding the right doses of meds that fit a taper schedule. Sometime it's difficult to split, cut, or order caplets or capsules so that you can "neatly" taper 10%, 20%, or whatever. Having said that, some taper is probably better than none. As you have done, talking to a pharmacist on ways to creatively taper can be helpful. Keeping your doctor in the loop is also a good idea. Best of luck.

Wishing all who visit here some peace this night.

[dgarmaise]

After I had already started my taper for the Neupro patch, and had gone from 4mg to 3mg, my doctors finally got back to me with their proposed taper schedule: Reduce dose from 4mg to 2mg; stay there for a week; then stop the drug. (This is while taking 10mg slow release morphine twice a day.) So I went from 3mg to 2mg. I have been there for 5-6 days now, and it has not been easy, even with the morphine. I am sure that the morphine is making my symptoms more bearable, but I am still up most of each night because of the legs. I sleep fitfully. I get 1-2 hours sleep a night, and I am not able to nap much during the day. I am not sure I should stop the Neupro completely in another day or, as the doctors recommended. To complicate matters, I have had side effects from the morphine. Severe dizzy spells during the night on two occasions, lasting about 30 minutes each time; except that the last one was just last night and the dizziness did not totally dissipate, I am still dealing with it this morning. I am consulting my doctors about what to do. This is not a lot of fun, but then that was to be expected.

[jy13131]

I had to also wean off of neupro and go through withdrawals. My Dr specializes in RLS and he does very little weaning once I augment. It's not going to improve things to stay on the DA any longer in my opinion. You kind of have to just jump in. I found it impossible to be totally comfortable during the withdrawal even with the opiates. But can you imagine trying to do it without?

[dgarmaise]

Thanks, JY. I think you are suggesting that at this point I should stop the Neupro and tough it out. But I am not entirely certain if that is what you are saying.

[jy13131]

Dgarmaise, I would go with what your doctor recommended. I was saying that Dr B had me do the same and I think it is because it is only postponing your ultimate "journey"and possibly even extending your suffering. The transition is not less severe whether you come off 2 or4. Does that make sense. It's kind of different than typical "withdrawal". It's augmentations. Its like .....withdrawal with an evil spin.