Here I go...

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Here I go...

Postby ViewsAskew » Sat May 21, 2016 10:06 am

OK, school is over, grades are in, and my job ended. While my ferritin is not as high as I would like, my insurance ended with my job and I couldn't get an infusion before the insurance ended, so I either wait until who knows when or I just go for it. So, I'm going for it - I am stopping my opioid, dealing with any withdrawal if I have any, and then stopping the DA to see what my baseline is.

It's possible that my symptoms will not be any different. Even if it is not, I'll have made sure and will know. In case that I am dependent on opioids and have withdrawal, I'll also be able to end the dependence and possibly reset how much I need to take given that I have had tolerance.

So, I started tonight. I was to have a meeting tomorrow, but it was canceled, so no more waiting. I have been taking 5 mg methadone and 12.5 of pramipexole during the week; though sometimes I need 7.5 of methadone. On weekends, I take 25 to 30 mg methadone. Tonight I cut the methadone to 2.5 mg. I added .625 more of pramipexole. I imagine that is more than enough to cover symptoms - so far, so good.

I will keep this up for 3-5 days to see how it works. If I experience any withdrawal to 2.5 from 5, I'll add kratom in right away. If I do not, by mid week I will add the kratom and then stop the methadone completely. Dr. B. doesn't think I will have issues, but I'm not so sure. Guess I will know soon!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Rustsmith
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Re: Here I go...

Postby Rustsmith » Sat May 21, 2016 11:46 am

Ann, you are a lot braver than I think that I could be at this point. Quitting all prescriptions is simply too scary to think about.

Having come off of a year of augmentation, the thought of going back to severe RLS symptoms would be terrifying for me. I am expecting to get a reduction in my meds when I go back to my doctor next month and even that concerns me. But then the higher level Me can also can rationalize that everything that I am currently taking to maintain control (methadone, pramipexole, gabapentin and MMJ) is a lot and that I probably should not continue at this level forever. But the lower level Me is not very happy about that thought.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

debbluebird
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Re: Here I go...

Postby debbluebird » Sat May 21, 2016 2:24 pm

Isn't it funny that we both decided to do this. I know now I was having withdrawal from the Methadone. I live 60 miles from a big town. I don't even know how to get Kratom. Also our money has decreased. None for anything extra.
Good luck to you.

stjohnh
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Re: Here I go...

Postby stjohnh » Sat May 21, 2016 2:57 pm

debbluebird wrote:...I don't even know how to get Kratom. ...


This place is good to start. $10/oz w free shipping. Red vein Borneo is commonly use by RLS patients.

http://www.phytoextractum.com/buy-red-v ... der-online

This place is less expensive if you are buying a larger quantity.

https://www.socalherbalremedies.com/product/red-borneo/

Blessings,
Holland
Blessings,
Holland

sleepdancer2
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Re: Here I go...

Postby sleepdancer2 » Sun May 22, 2016 3:26 am

Oh my! Scary endeavor. I hope you find that once past the after effects of augmentation that your baseline movements are not as bad as you've been experiencing. The severity of my symptoms that I thought was a progression of the disease turned out to not be. Without augmentation maybe you'll need less meds to control your movements. I'm a big proponent of a slow wean off Mirapex, just due to my experience with withdrawal effects. Best wishes and please keep us posted.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sun May 22, 2016 6:17 am

I don't have augmentation now, thankfully. That was years ago - 2005. But, my symptoms never reduced after I stopped the DAs, which is one reason I want to do this. Just wondering what will happen. I checked a few months ago and was able to take pramipexole for 30 days without augmenting (I originally augmented in less than 2 weeks, so was worried). Guess the infusions have at least made me able to use the DAs for a longer period.

I want to complete stop the opioids first. Then see where symptoms are. If they are the same, that will tell me something. Then, hopefully, I'll stop the DA, too. I may chicken out....we'll see! I've wanted to do this for about a year, and planned to last October, but I accidentally got a job, lol, so I had to wait until it was over. I really didn't want to do it in the summer, but I figure waiting is silly at this point.

Deb, how's the withdrawal coming? It's amazing to me that even though we take such small doses that we can have just as nasty of withdrawal symptoms as if we'd been taking a lot more.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

debbluebird
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Re: Here I go...

Postby debbluebird » Sun May 22, 2016 7:45 am

Not too good. Just now I was finally able to lie down and sleep for a couple of hours, but woke up with leg jerking. The thing is, usually as soon as I stand up it stops. Not this time. I'm having to pace. At least I got a couple of hours. That's the most I've gotten in a row. The Gabapentin just doesn't seem to be doing much. I broke down and took one methadone earlier. That's probably why I got two hours.
Hope it goes well for you.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sun May 22, 2016 5:59 pm

Thanks - I've had two fitful nights. The pramipexole puts my brain in overdrive and I wake up constantly. It also affects my body temp and I get what are like hot flashes - I have to cool off to get back to sleep. The methadone mitigated that to a great degree and I miss it a LOT. I'm at 2.5 mg now. Should stop it in about 5 days. Am thinking of adding gabapentin in, but think I tried that before and it didn't help.

Med issues are just not much fun, are they?
Ann - Take what you need, leave the rest



Managing Your RLS



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.

mh380
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Re: Here I go...

Postby mh380 » Sun May 22, 2016 7:19 pm

Hi Ann,
That sounds like an important experiment for you to run; it's such a shame that for us to gain the sorts of insights you are going for often requires so much willpower and short-term anguish. Honestly, the prospect of having my RLS totally uncontrolled scares me a lot more than gradual opiate withdrawal (Trainspotting dramatization notwithstanding).

If I'm reading your posts right, what you are saying is that in 2005, you augmented on a DA very quickly, and then you stopped taking the DA, but your symptoms never got better. And when you tried other treatments, like Methadone, your symptoms maybe got better initially, but then you developed tolerance, and now your symptoms seem to be as bad as ever. So you want to have a wash-out period to see what your baseline really is, so you can figure out if the medications you are taking are actually doing anything. Is that more or less right?

I hope Dr. B is right, and you are able to stop the methadone without much trouble,

Marc

debbluebird
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Re: Here I go...

Postby debbluebird » Sun May 22, 2016 10:25 pm

I broke down about 3 am and took a Mirapex 0.125 mg. It's been four years since I've had one. I was able to sleep five hours. That really helped. I guess I'm back on it for at least a little while.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Mon May 23, 2016 12:01 am

Hi Marc - close :-).

I had treatment for PLMS - my RLS was very, very mild and I only had it a couple days a month - in 2003. I could always get to sleep. But, I was exhausted all the time - all those movements I'd had since I was a toddler had caught up to me. Within about ten days of using the lowest dose of pramipexole, I had daily RLS. The doc kept giving me more and the symptoms increased each time until they were 24/7. By the time I finally learned enough to help myself, it was 12 months later. It was another 6 months before I found a doctor to help me - I tried twice to stop, but I couldn't get past day 5 on my own. This was 2005.

The symptoms stayed at 24/7 for a few months and over the next year reduced a bit - more like 18/24. It's stayed that way ever since.

I used 10 mg methadone for about 4-5 months, then needed an increase. Doc said I likely just didn't have the dose right to start. Went to 12.5. 8 months later, to 15.

I stayed there for two years although I didn't sleep well the second year - I didn't want to take more. Eventually I had to go to 20 mg - Dr. B. and I tried all the other opioids, but I couldn't tolerate them for one reason or another, so I just went to 20 in about 2008.

I was so worried that I would max out in just a couple years if I kept having tolerance, so I asked Dr. B. if I could try to alternate pramipexole with methadone - using the DA no more than 2 days. It worked. While I have had some minor worsening and now use 25 mg methadone, I didn't need to increase to that until 2014, IIRC.

So - this experiment is two fold. First. I want to stop the opioid for at least 30 days and see if I can reduce the amount to at least 15 mg if I need to take it. And, if I can stand it, I will also stop the pramipexole just to see how bad it really is. I haven't been unmedicated in 13 years. I truly doubt this will change much, but I feel I must try.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Mon May 23, 2016 11:29 pm

OK - just two nights in, lol, and I already don't like it. But, I didn't expect to!

My sleep is so shattered with pramipexole. And, I'm trying to keep my dose low, so a lot of waking with movements. I took a gabapentin last night - just 100 mg - to see if I would sleep better. It helped a bit, but I still woke up at least ten times. Better than when it's 20 or 30! Was SO tired when I tried to get up, though, and it's taken me about 5 hours to get functional today. I wish there was a shorter-acting version of gabapentin.

Am deciding if I should just dump the opioid today. I haven't had any issues going from 5 mg to 2.5 - though it is only 2 days - and I don't want to be on the pramipexole longer than 2-3 weeks, so I likely should just jump. If I start the kratom tonight before my normal methadone dose, hopefully I can stave off the worst of the withdrawal symptoms - if there are any. I've stopped two or three times before and never had more than minor headaches, but this time for some reason I'm more concerned - hope it's just my imagination.

The kratom does not help me sleep better. I WISH I had some MMJ for this part, but I guess I'll just sleep very lousily for a few weeks. We've all been through worse.

Funny - having been through worse doesn't make it feel better. I never want to go through worse again...and doing it is taking all the will power I have.

And, I must be crazy - I'm stopped my AD today, too. I cut it back by a quarter over three weeks, so today is the day I stop. I've been having quite a few nosebleeds - since pramipexole really congests me, I checked to see if that could be the cause. It wasn't. On a whim, I checked the escitalopram. Yup - nosebleeds are in the .1 to 1% group of side effects. So is excessive sweating - I've been SO hot lately. Thought it was hormones. And, it could be, but my guess is that this is exacerbating it. Between the weight gain, inability to orgasm, lack of sexual desire, and nosebleeds, this clearly isn't something I want to take. While I don't feel like all is roses again, I am not sitting on the couch all day anymore, so time to ditch it. Hopefully no side effects from doing that, too :-).
Ann - Take what you need, leave the rest



Managing Your RLS



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.

debbluebird
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Re: Here I go...

Postby debbluebird » Tue May 24, 2016 12:01 am

Sounds like you are just as miserable as I am. It's pretty bad again this evening. It's hard to sit here and type. I don't think the gabapentin helps that much either. Not even sure about adding back the Mirapex. Oh well. Too bad we don't live closer. Up all night together ?

badnights
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Re: Here I go...

Postby badnights » Tue May 24, 2016 2:20 am

Ann, I had a test done recently for various hormone metabolites in urine at various times during the day, and it showed that I am abysmally low in androgens, progesterone, one of the three estrogens, cortisol, and some other things. All of this can be caused by opioid use. In fact, it can set in within a week of beginning opioids.

I asked my GP about it around 2 years ago and she kind of pooh-poohed me, so I sort of back-burnered my concerns. It came up again when my other GP descided to send me to a naturopath to get a 24-hr salivary cortisol test, which showed such low levels that the lab offered to do the hormone metabolite test for free, because they were so curious. But then they realized I was on hydromorphone and withdrew the offer, because hyrdomorphone use would explain it. Nevertheless, they gave a discount when the naturopath pressed them on it, and I got the test done.

I have yet to talk to my real doctor about what it all means, if anything - - but this research is real: http://www.painphysicianjournal.com/cur ... journal=68 Or you can look up opioid induced endocrinopathy, or opioid induced androgen deficiency.

Symptoms associated with low levels of these hormones include depression, fatigue, low sexual desire, inability to orgasm, low bone density. It says in that paper that production seems to resume quickly - days or a week after ceasing opioid use.

I am telling you as a form of encouragement. I have written down my reasons for wanting to go off meds, and one of them is to regain production of these hormones. Possibly you are affected the same way, which means going off might be helpful in more ways than you had thought.

I am considering a 5-on 2-off plan for after I start up again. Not sure if that will prevent the problem. Maybe it needs to be 2-on 2-off. I just have no idea what to use in the 2-off.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Re: Here I go...

Postby debbluebird » Tue May 24, 2016 2:35 am

That is really interesting.


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