Please help, I don't know what to do. Stopped requip and 10 days later still can't sleep

[stjohnh]

I get red vein borneo kratom (the most commonly used by RLS patients) from
http://www.phytoextractum.com/buy-red-v ... der-online

$10 for 1 oz. $5 for usps priority delivery. $25 for fedex overnight.
Take 1/4 tsp in ice cold grapefruit juice for first dose. If no symptom improvement in 2 hrs, take 1/2 tsp more. It's very bitter.

See the Kratom thread for more info.
viewtopic.php?f=20&t=9048

[ViewsAskew]

The good news is that gabapentin won't cause what the DA did. Stopping will not be the same at all. Sure, you have to reduce it carefully, but it doesn't increase symptoms.

Per the kratom, there are so many vendors that I had no clue how to choose. I read the threads here and then read about vendors and using kratom on Reddit. The reds are considered best for sleep; that hasn't always been my experience, though limited it is! I bought a sampler pack at Hill Country Kratom and then bought 1 oz each of about 5 different reds at Socalherbalremedies - it was $5 to $8 an ounce - both places gave me a free sample, too. If you shop at the So Cal Herbal Remedies, you won't find it listed on the site - you have to type in speciosa.

[badnights]

Stopping gabapentin abruptly can cause various problems but it will not cause worsened WED/RLS. Some people have no problem even stopping abruptly, and there is generally no problem at all if you taper off it - i.e. no bad effects whatsoever. Taking the gabapentin is not giving up. It's trying to get a bit of sleep so you can think rationally and hang on while you go through this amazing, brave and very necessary withdrawal.

The benefits, even if it doesn't do much for you in terms of symptom relief, are what Ann said: your doctor perceives that you're working with him, and he can move on to something else when the gabapentin doesn't work whereas he can't if you never try it. Sometimes you have to be a guinea pig for them, it's the most expedient way. But don't sell him short; if he sees you, he can see how much you're suffering, and I suspect he's human and knows compassion. He will try to do his best for you.

Whether kratom or gabapentin or both, you should be able to stop them fairly easily in a month or two and see how you're doing then.

Ann and others on this board saved my sanity when I was as desperate as you are now. I almost really thought the only answer was death, I simply couldn't see any light at the end of the tunnel, but they assured me it was there. I endured 3 weeks of hell because of the support I received from people here.

[ViewsAskew]

I'll echo what Beth said - I came here when I realized my doctor had caused my situation by making me stay on DAs for over a year after augmenting. I had lost my job, was a walking zombie, had tried stopping the DA on my own and it hadn't worked...and was in pretty bad shape. The people here helped me, I learned of an upcoming Foundation event that I could attend (that truly saved me), and met many of the wonderful people here. That was the turning point for me. I've had other turning points since...and the people here are always there for me when I need them.

[Polar Bear]

I had suffered for 20+ years when I found this site, that was 10 years ago. I hadn't known that such support existed and already had symptoms 24/7 and in both my arms and legs. This was my saviour.

[rikku9]

@ViewsAskew, what do you currently take?

It seems I'm in the same boat as you, it's 3 weeks later after stopping Ropinerole and I don't think my symptoms are going to get any better, I can't sleep at night even with 150 mg of Tramadol and the Gabapentin doesn't do anything for me. Tried Kratom a few times and that didn't help either, I still couldn't sleep and the last time I tried it it just made me throw up. My current doctor just doesn't understand and won't give me anything that works so I've hardly slept in the last 3 weeks. I'm at my wit's end but my husband is flying with me next week to see Dr. B so I'm so thankful for that. It seems that despite wanting to be drug free that at least for now I might have to take an opiate in order to just get any amount of sleep. I'm still hoping that maybe in a few months my body will get a chance to heal but I'm starting to accept the fact that this might just be my baseline from now on

[ViewsAskew]

So glad you are going to see Dr. B. It sounds crazy, but seeing him saved my life.

I am in flux right now - stopping my current regimen. Initially after getting over the augmentation, I used methadone. Several years after stopping the DA, I started alternating methadone with a DA - never taking a DA more than 5 days. Since I had two iron infusions, I've been able to take a DA for up to 3 weeks without augmenting (originally augmented in about 10 days). I've just stopped the opioid and am using gabapentin, pramipexole, and krarom for the next few weeks. Not sure what is after that!

I hope it's not your baseline...but if it is, it is. I've spent years wishing it were different - it just isn't.

Not sure what kind of kratom you took or how much - I haven't had nausea, yet, thankfully. I've kept the dose to between 1/2 t and 1 t. That is relatively small. It helps take the edge off, but doesn't resolve it for me.

But, at 3 weeks, I don't think you've given it enough time to be sure this is it forever. I just was reading someone's post from a few years ago (I was searching for something) and it took him at least 25 days. And, in the current issue of NightWalkers, one of the people interviewed said it was about 25-30 days (not in front of me, but I remember thinking that it was almost a month).

EDITED TO ADD: I just looked at the issue and it was 34 days.

Hang in there!

[badnights]

you're doing the best thing possible in the circumstances, you won't regret seeing Dr. Buchfuhrer. I'm so glad your husband is onboard; WED/RLS is a hard thing to understand, and it's brutally sad when spouses don't support you, and such a gift when they do.

[chuas2]

rikku9, I take 900 MG Gabapentin every night, and 100 MG morning and noon, and 15 MG MS Contin twice a day. Coming off way too high doses of narcotics (taken for chronic back pain and sciatica) really triggered my RLS symptoms, and I'm still trying to figure out ways to cope. I live in a purportedly "progressive" area (San Francisco) and yet I've only found one doctor who believed me when I said I had RLS in an arm. And she's the only doctor who knew of possible ways to treat and things (rx and non rx) to try. Please don't give up, you will find so much validation and support here. I don't post much, but I read a lot, and it is a comfort! See you!

[Rustsmith]

chuas2 wrote:
I live in a purportedly "progressive" area (San Francisco) and yet I've only found one doctor who believed me when I said I had RLS in an arm.

chuas2, compared to many of us, you live within a reasonable distance of one of the RLS Foundation's Quality Care Centers at Stanford. You can find a complete listing of the QCC's at http://www.rls.org/qcc-directory

If things don't work out with your current doctor, you might want to look into them. It can take a while to get an appointment, but the difference in the level of the doctors' understanding of RLS and the greater range of treatment options that they will take can make the trip worthwhile.

[rikku9]

@ViewsAskew May I ask why you are stopping your current regimen, did it stop working? Also, did the DA ever cause impulse problems with you? I'm wondering if I ever start using DAs again but this time alternate with an opiate like you said, if this would cause the ICD to resurface or if not since the DA wouldn't have a chance to build up in my system so much.

Thanks again everyone for the encouragement. I've learned to just take this one day at a time and maybe I will still get a bit better over the next few weeks or maybe not, but this is just my life now.

[rikku9]

@chuas2 Thank you. I'm sorry to hear that you are having a hard time as well. I also live in the bay area and I've dealt with so many doctors that have no clue, it's so discouraging. Even ones that were supposed to be sleep specialists, they don't seem to understand the seriousness of not sleeping for weeks on end. It seems the only ones who understand this horrible disease are the ones who suffer with RLS. I do get it sometimes in my arms as well, for me it's usually in the wrists.

[Yankiwi]

Apart from finding a real RLS medical expert, the best thing an RLS sufferer can do is read up as much as possible, ask questions on this forum, watch (or participate in) the webinars and arm yourself with scientific information to take to your doctor. When the patient is informed, a doctor will listen harder. Of course, you might need to be diplomatic too. Docs don't want their lack of knowledge pointed out to them.

[stjohnh]

When the patient is informed, a doctor will listen harder. Of course, you might need to be diplomatic too. Docs don't want their lack of knowledge pointed out to them.

I'm a retired doctor and can confirm this. I think one of the best ways of helping to inform your doctor in a non-threatening way is through the educational materials available here. Leave one or two of the papers with your doctor when you go and visit, not a giant pile.

[ViewsAskew]

When the patient is informed, a doctor will listen harder. Of course, you might need to be diplomatic too. Docs don't want their lack of knowledge pointed out to them.

I'm a retired doctor and can confirm this. I think one of the best ways of helping to inform your doctor in a non-threatening way is through the educational materials available here. Leave one or two of the papers with your doctor when you go and visit, not a giant pile.

Indeed! I went to my first appointment with a book, emails from Dr. B, and at least ten studies. Needless to say, I learned that this approach didn't work!