Sad, weary, and let down

For everything and anything else not covered in the other RLS sections.
lyndarae
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Location: pocatello,Idaho

Post by lyndarae »

Hey Ann, The date was great, BUT!!!!! When we came back to my place to watch a movie I found it very difficult to sit still. He knows a little about me have rls but I havent said too much about it. I am so use to being on my own and moving about how I need to that it was tough to sit still with him. It was along two hours. I havent noticed this about me in so long, It was an eye opener. I was a mess after he left my legs were killing me. But I enjoyed his company very much and we have known each other 2 years met in program so it was fun!!!! Just wanted to let ya know~~~~~~~~~~~~~Lyndarae

ViewsAskew
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Post by ViewsAskew »

It's two months since I started the iron therapy. I started with a ferritin of 9, as of last week it was up to a whopping 18. I am glad it's up, but can see that I will not be discontinuing my current drug regimen for a while :x . I've had a few months of sleep, even though I still do not get any deep sleep, and that it good. But the meds, even at the extremely low dosage are starting to fail me again. Three nights I've awakened to insomnia. Each time I was unable to fall back to sleep. For over a week, I'm getting breakthrough RLS throughout the night. And the lovely songs stuck in my head are starting to return.

I know that I need these levels up. I know that I appear to be very sensitive to drugs. I've already tried 7 things either alone or in combination. I already do the supplement thing and it doesn't help. So, the only for me to do is to accept that this will be what it is and that my fretting and fighting are not going to change things. When it gets up in a few months (could take as long as 6 months), then I will see what happens. I just don't want to wait :cry: . Like many of us, I've spent years waiting. But, RLS didn't ask me what I wanted :? .

OK, I've given myself the pep talk I needed this morning. It's sort of interesting to chronicle the stages of this. I wish I had started a few months earlier. If I had and went and read those posts, I'd not feel so sorry for myself now. . .it really is so much better. Maybe that is part of what makes it harder. I've had glimpses of the light through the trees. The darkness of despair that comes with fatigue, sleepless nights, the inability to DO anything to make it different (except to think about it differently) is terrifying. Now, if I can just accept that this is the ebb and flow and to go with it, to let it be. To keep saying the Serenity Prayer. All things change. So will this.

Ann

cornelia

Post by cornelia »

Ann, I'm so sorry that it seems that you are back to square one. So am I. The extra Neurontin worked wonderfully when I started it some 4 weeks ago and now it has stopped working and the same things are happening to me (RLS episodes in the middle of the night, having to walk the floor etc).
Are you sure you want to wait another 4 months to talk to your doc? Raising your ferritin might not work, though I hope sincerely that it does for you. It didn't work for me. Mine was 11 and it took 6 months to 50+. It seems such a long time to wait in agony. Think about it.
In the meantime I wish you as well as possible.

Corrie

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Post by ViewsAskew »

Oh, Corrie, that is the scary part isn't it, that it won't work. I think I read somewhere that a portion, (20 percent?) of people had all symptoms go away, a portion had reduced symptoms and a portion had no change when the ferritin went up. And 6 months!!!! I was hoping for shorter, but since it only went up 9 in two months, it will take at least 4 more, like yours did.

Tonight I took my one med an hour early because I thought they were threatening. At the time I would normally have taken my dose, they were already crazy. I can't up the dose because of what it does to me. Like you, Corrie, the Neurontin only helps me for short periods (like 3 or 4 days) then it doesn't help anymore. I guess I can take it for 3 or 4, then not for 3 or 4 and see what happens.

You've given me food for thought. I'll give this another week. If I'm still getting breakthrough and insomnia after the week, I'll call her. I'm loathe to try anything though, knowing how badly I've reacted to so many things. It's like playing roulette. Or being a human guinea pig :roll: .

Thanks - Ann

cornelia

Post by cornelia »

Good idea, Ann, give it another week and see what happens. I will try to stick it out another 2 weeks, when I see my neuro. I can always call him, but I feel better when I see him eye-to-eye. He might start trying methadon, but he said that once we would go that path, he only wants to prescribe it for every other day use. I wonder what his solution is for the remaining days.
Personally I think that with severe RLS upping the ferritin will not work. Or just a bit, which doesn't really help. But you know, as we are different, we have to go that way.
Yes, we are our own guinea-pigs.
You think that the DA's give you rebound/augmentation, but you have to bear in mind that RLS has become worse (LOL) as it tends to be. I think dr B would say that to you. But you might be right, of course.
I know that in my only 4 years of history with RLS it has become dramatically worse and I fear for the future. On the other hand: our RLS might stay the same for a few years. Who knows?
I have read that at the age of 70 RLS tends to quiet down a bit: that is a looooong way off.
Anyway, I read somewhere: when life gives you lemon make lemonade.
Let's try it.
Bye, Corrie

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Post by ViewsAskew »

Corrie, I was wondering how it's going for you? Have you tried the Methodone path?

I started the iron therapy in November, I think and it's now almost May - so 5 months of taking that nasty stuff. And so far, nothing to show for it. I am not trying to discourage people from trying, but so far it has not helped me at all. Of course, the neuro forgot to give me the test script, so it wasn't tested this week when I had my appointment with her. But the RLS is no better and I've started to augment and have breakthrough on the current meds. I've had to triple my dose of Mirapex, meaning it's time for another holiday. But what a struggle to get something to try in its place.

I finally have convinced the neuro to try opioids. She, of course, wrote me a script for the least amount possible - 1 65 mg cap of Darvon a day. It does work. It does not make me sick (Vicoden makes me vomit, so I was worried about having an allergy to the opioids). She didn't give me enough to truly test it to replace the Mirapex and clonazepam on a holiday and have it last more than a week or so. I think I will try it anyway. At least I'll know if it works or not.

In three days, I've reduced my Mirapex by 2/3. Tonight I've taken 3 Darvons: 9 PM, 12 PM and now at 4 AM. Of course, I'm awake waiting for it to work and am eating to make sure I don't get sick. But if this works, in a few days I may cut out the Mirapex completely and see what happens. Looks like I'll need at least 4 Darvon a night to replace it. If Dr Rye and I are right, it will reduce the augmentation and the RLS will be at the level it would have naturally progressed to. This may be much more than where it was when this all started, but it may be much less than it is now! That's my hope. And that I can finally determine whether removing the Mirapex has other positive effects.

In he meantime, I'm not terribly hopeful; like so many of use posting right now, not only is my RLS out of control, but my life seems to be, too. The only silver lining I see at the moment is that I have new insurance - my co-pays are less and I don't have to have a referral from my primary in order to see a specialist. So, if I decide to move on to another neuro, at least I can do it on my own. In fact, I could schedule appointments with 5 of them and just start going an see what happens!

Well, I do see my primary in two weeks for a general checkup. I'll make sure she checks the ferritin.

Ann

becat
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((((hugs to Ann)))))))

Post by becat »

Darn Ann,
I was so hoping to hear that your iron levels were just surely climbing, while a reduction in RLS. Haivng just started mine, I think your right. It is nasty stuff.
I am truely sorry to hear that Mirapex is not working at a lower dose, as well. I did notice side effects with Mirapex, but can't prove them. The worse was last summer when I just ballooned out so badly over the course of a week, that hubby had to cut my wedding rings off. It was strange, my face rounded out like I was toxic. Not sure what happened or if it was the Mirpex or not......I seem to think that was the only answer at the time.
One benefit was my migraines, I had so very few on Mirapex. I asked the doc the other day about, he said there was no information to prove it helped with that. I know I have more now.
I'm glad you were able to get some pain medications. I honestly don't know why that is such a hard thing to do.
Ann, we'll have to see this as a phase we're going through. We've both done well with medications for a period of time. This is just a phase for now and we'll get right back to meds working........or we'll simply get the right meds.
Hang in the Ann, concetrate on that silver lining.

cornelia

Post by cornelia »

Hi Ann

you are in a big adventure changing from a DA to opioids, Ann. Hope it will work and if so, for a very long time.
No, I'm not on methadon. My neuro doesn't want to prescribe it right now, but I know he will when everything else has been tried. He has at least one other patient on it that I know of. Whatever happens my neuro doesn't want to up the Requip (I'm on 1 mg a day) because he is the one who says that more is not better in many cases. I agree. We had this discussion before, remember? My RLS really is managable right now, now added with 1200 mg Neurontin daily. My big, big problem is still energy.
I was hesitant to tell you when you were starting iron pills that I didn't believe it would work. It doesn't most of the times, I think. Not with severe RLS anyway.
You write that you are not hopeful. I can understand that. But I have seen miracles happen with people on opioids. Really and truly. Remember the physician I think it was who was on disability for RLS. As soon as methadon was prescribed to him he could start work again. When it was taken away from him because his neuro was jailed and another one didn't want to give it to him he was home again.
It is also an ethical issue really. I can't work anymore because of RLS. If I were on methadon would I be able to again? If so society is paying for the time I wasnt able to work. Is that plausible?
Well, time to go to bed.
I keep my fingers crossed for you.
Bye, Corrie

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Post by ViewsAskew »

OK, so I've managed it. I got the iron to 48 in the middle of May and stopped until today. I needed a breather from the nasty side effects :roll:. I'm off of the Mirapex. I'm taking the methadone, which works excellently for the RLS. I'm tapering off of the Klonopin - am taking less than 1/2 of what I was taking. My goal in stopping it was two-fold: to see what my RLS and PLMD is like after detoxing from the Mirapex that screwed everything up (but always worked well on the PLMs) and to prevent tolerance as I was already physically dependent. Oh, and a third reason: because I don't like how zombie-like I am each morning.

And that's where the next problem starts. Yes, doesn't it seem that there is always another something? Lyndarae's meds aren't working, Becat is having problems, Penguin never got anything resolved in the first place, and on and on. . .

So, back to the next problem. The Mirapex and the Klonopin both work well on PLMD. Methadone doesn't. It dulls them as I understand it, but doesn't stop them. As days go by, I still don't have any RLS, I'm slowly losing weight that I gained from the Mirapex, the awful side-effects are gone. . .and I'm waking up more and more frequently during the night for no apparent reason and I'm sleeping longer and longer and waking up more and more tired.

:idea: I remember this. This was exactly what it felt like before I started anything and had a problem with the PLMD! I sleep. I kick during sleep. I am tired everyday because I get little or none stage 3 and 4 sleep.

This means I have to find something to control the PLMD. But what???? I do not want to take ANY of the DAs given my past experience with side effects, weight gain, rebound and augmentation. I want off the Klonopin because I'm physically dependent and I'm like a zombie in the morning.

Jumpy Owl, did you have luck with one of the shorter acting benzos? Maybe if I take a shorter acting benzo for a month, take a week off, then for another month, I won't get physically dependent. I'm just not sure of how well they work for PLMD. I've gone to all of the sites and there just isn't as much info about PLMD alone as a seperate thing from RLS.

Anyone out there with any ideas?

Oh, I've also noticed that since I'm off the Mirapex that I am again very, very sensitive to caffeine, alcohol and eating more than a small amount of stuff high in sugar. Seemed that while on it, those things didn't set off RLS. Now that I am off, they all do again - at least if consumed in the evening at any time.

Hope Canadians had a good Canada Day. Hope Americans had a good 4th.
Ann

becat
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Hi Ann

Post by becat »

Hi Ann,
You know I have been wondering the same thing about Medications.
I too could not believe what Mirapex didn't do for me in the end. I suffered hard from augmentation. I did gain weight, but the worse of that was having to cut off my wedding rings last summer. I think I was toxic and bloated, not heavy so to say.
Stopping Mirapex all at once, not such a good idea. Who knew, until we all started comparing notes.
I know my backslide with the meds. is a combo of stress and grief. If I handled those two things better, I might be better off. I did great until Feb. 1. I can date mine, which tells me to hope that if things calm down I'll be good again. I had to call my doc and ask for the whole Percodan tab a day, was on 1/4 to 1/2......I felt like if I could break the pain cycle I could out run this all.
Now I'm wondering what is the next step if it's not a matter of breaking a pain cycle? I don't want to be on the DA's either, but there have been days that I wondered if that would be an option that the doc would choose.
Scary to think we could be back at step one in no time.
Maybe I could blame it on the weather. Having summer in full force sucks. 100 everyday or darn near. I'm ready to move, but won't. I know I have it easier in the winter because I can freeze my legs.
I will tell you there is a difference in the PLMD thing. I've not had a sleep study. BUT the hubby actually tells me I'm kicking him out of bed some mornings. That's new since APR.....Maybe I should have a sleep study done...........BUT why, to tell me what I know. Am I really going to take a different medication. Yes, probably if I have to.
You tell me, what are we going to do. Your young, I'm sorta young.
Makes our works here and other places important doesn't it.
Ann, I hope the rest finds you. I know you've worked so hard trying to get your meds right, get off the ones you were on. I'm with ya and hope you get the best there is to offer. If anyone finds the answer it might be you. You work hard enough to find it.
hugs to ya.

ViewsAskew
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Post by ViewsAskew »

Hey, Lynne. I used to live in your area and can't imagine how you're dealing with the heat - good gracious I used to just dread summer when I was there.

Thankfully we've all been able to share our experiences we've had with these drugs - you're right, who knew? But is anyone listening besides us? I'm not sure they are! I know my doctors only listen to a point and then assume I'm an anomaly. But so many people have similar problems. I don't know what the next steps are. I'm glad I'm here because it's definitely a better place than where I was! Maybe I'm greedy, but I still want more. Nice of you to have such confidence in my hardwork :lol:.

For those of us that have problems with DAs, seems we are in a more difficult situation regarding the PLMD. I'm seriously thinking about buying one of the Actiwatch things. Ridiculous that the sleep clinic won't give us an Actiwatch for a week after the initial diagnosis. When the PLMD's are down to a reasonable level and you're still tired, then maybe you go back for a sleep study to see if something else is wrong.

Hey! This is a great idea! First option - several of us pitch in together as a group and we buy the Actiwatch and we just ship it around to whoever in our group needs it. Second option, one of us buys the Actiwatch and then rents it to others who want to use it - small fee like $20 plus shipping.

I am thinking that for those with pain, you have to take an opioid or opiate. For those that can't take the DAs and the anticonvulsants don't do the trick, same thing. (Of course, this only applies to those that have gotten to the point that they have no quality of life without meds.) Then you've got to find something for the PLMD. Since there isn't much research about them independently that I've been able to find, guess for now it has to be a benzo, but a shorter acting one like temazepam and you have to do a holiday once a month.

I can sort of see some fireworks in the distance; am going to go to my deck (I'm on the fifth floor) and see what I can see. Some years I can see fireworks going off from several places all at the same time. One of the pleasures of being in the city. (Not knocking the country, used to live on 3 acres in the middle of nowhere.)

Ann

*edited for spelling mistakes!
Last edited by ViewsAskew on Tue Jul 05, 2005 5:40 pm, edited 1 time in total.

cornelia

Post by cornelia »

Hi Becat, Ann and others,

so sorry to hear there are problems again. I have them as well, as I decided to drop the 5th Neurontin, although it made PLMD better, even PLMW during the day for the first time in my life. The days that I didn't need Tramadol in daytime were horrible. No RLS, no PLMW almost, but I couldn't funtion without it. No energy at all. On these days I was really depressed. So now back to 4 Neurontin, which means worse nights and being very tired when I wake up. Tossing and turning again. Also daytime problems again for which Tramadol has been reintroduced. But allover I am still better off mentally in this way.

Ann, maybe you should add Neurontin or Topamax or Lyrica again, they do take care of PMLD's.

I am sure that with refractory RLS it is impossible to feel happy with the meds for long stretches of time. I mean, so many of us seem to be happy at first and after a time this wears off and we are in for another change in meds.

What I didn't know is that methadon takes care of RLS, but not of PLMD, according to Ann. Remarkable as 80% of RLS-ers have PLMD too. Do only the 20% left with only RLS benefit?
You know, this kind of information is really interesting.

Well, I go on with my struggling now

Corrie

cornelia

Post by cornelia »

P.S.

Benzo's, except for clonazepam, do nothing for PLMD's I should think.

Corrrie

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Post by ViewsAskew »

Corrie, I think the opioids and opiates dull the PLMs, but they don't stop them. Since I'm tired again, I'm only guessing that it is the PLMs - of course I don't really know! That's where the Actiwatch idea comes in :wink: .

So sorry you are having trouble again. I think you are right. We get to keep adjusting and adjusting with refractory. I'm sorry to that you are still having difficulties, too.

I have thought about a neurontin at night to see what happens. It hasn't helped RLS in the past; I don't know if it helped PLMD because the Mirapex always helped, even when the RLS was out of control. Maybe I will add a 300 mg tablet and see. I did find a Website last night after I posted that listed the following categories of drugs as specifically helping PLMD:

"Benzodiazepines: These drugs suppress muscle contractions. They are also sedatives and help you sleep through the movements. Clonazepam (Klonopin), in particular, has been shown to reduce the total number of periodic limb movements per hour. It is probably the most widely used drug to treat PLMD.

Dopaminergic agents: These drugs increased the levels of an important neurotransmitter (brain chemical) called dopamine, which is important in regulating muscle movements. These medications seem to improve the condition in some people but not in others. Widely used examples are a levodopa/carbidopa combination (Sinemet) and pergolide (Permax).

Anticonvulsant agents: These medications reduce muscle contractions in some people. The most widely used anticonvulsant in PLMD is gabapentin (Neurontin).

GABA agonists: These agents inhibit release of certain neurotransmitters that stimulate muscle contractions. The result is relaxation of contractions. The most widely used of these agents in PLMD is baclofen (Lioresal). " Posted from http://www.emedicinehealth.com/articles/48860-5.asp.

So, maybe the Neurontin first and then the Baclofen.


Ann

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Post by ViewsAskew »

Well, in doing some more research, I came across this statement from MDVU: "In several clinical studies, the use of opioids has been shown to alleviate paresthesias or dysesthesias, motor restlessness, and sleep disturbances associated with RLS. Polysomnographic studies have also demonstrated that opioid therapy may significantly decrease PLMS in some patients. Long-term, ongoing opioid therapy has been shown to remain effective for up to 15 years or more. "

My neuro said I'd have to stay on the Klonopin while taking the methadone because the methadone wouldn't work on the PLMD. Hmmm. The above does say that is works "in some patients" so methadone obviously doesn't always work on PLMD. It never ceases to amaze me that 'speacialists' in RLS have different opinions about drugs and what works!

I looked on rlshelp.org and found this statement about Darvon: "This drug may also decrease the arousals from PLMS, but does not seem to decrease the amount of PLMS." But he didn't include info about the other opioids and PLMD.

Seems there isn't an easy answer for this one. A big part of the problem is that so much of this information is anecdotal; there just are not many studies. The studies are usually of a small number of patients and haven't been replicated. We just need more studies! If anyone is in an area where they can participate is one that won't harm you, please do it!

Ann

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