Furious....and scared

[debbluebird]

I am so glad everything worked out for you. You deserve that. Wish we could clone him.

[Polar Bear]

[scottlevad]

Ann

Thank you for sharing, with me and others, your horrible doctor experience and associated trials. Thanks to everyone else who contributed; you are all so very kind to help Ann and ultimately me and others. I started reading because of the opioid-WED studies you posted at the start of the discussion. I would love to see a compilation of studies about WED being successfully treated with opioids collected and shared publically on the Willis-Ekbom Disease (WED) Foundation web site. Sufficient opioids eradicate my severe RLS/WED symptoms most or the time. I cannot live without them. All the non-opioid medications gave me little to no relief from WED; the DA meds made my symptoms much worse within weeks of starting. My biggest fear in life now is the possibility of suffering the same plight you have discussed. My life would be dramatically changed without appropriate medication. We are all at the mercy of our doctors. I like the idea <rthom> put forward of creating/compiling a national list of WED/RLS-competent doctors on the Willis-Ekbom Disease (WED) Foundation web site. God help us all if opioids are taken away from our treatment options.

God help you Ann find a competent doctor where you live.
Scott

[doety]

Ann, I couldn't tell if you were flying right back. When I was there I went to the Getty Museum -- never seen anything like it. I think you'd enjoy it (especially after a good night's sleep!)

[ViewsAskew]

Ann, I couldn't tell if you were flying right back. When I was there I went to the Getty Museum -- never seen anything like it. I think you'd enjoy it (especially after a good night's sleep!)

I haven't been to the Getty - and you're right, I'd love it!

I'm here through Monday, but have to work during the day. I missed working on Thursday and much of Friday, so I have to make up for it this weekend. But, whether sitting inside or outside with a view of the harbor and the Pacific ocean is enough of a benefit that I don't mind working! maybe tomorrow I can get up early enough that we can go for a hike in the hills. I just realize I was taking the Horizant too late, so that I was much too drugged in the morning. Tonight I will take it several hours earlier and see if that helps.

[ViewsAskew]

Ann

Thank you for sharing, with me and others, your horrible doctor experience and associated trials. Thanks to everyone else who contributed; you are all so very kind to help Ann and ultimately me and others. I started reading because of the opioid-WED studies you posted at the start of the discussion. I would love to see a compilation of studies about WED being successfully treated with opioids collected and shared publically on the Willis-Ekbom Disease (WED) Foundation web site. Sufficient opioids eradicate my severe RLS/WED symptoms most or the time. I cannot live without them. All the non-opioid medications gave me little to no relief from WED; the DA meds made my symptoms much worse within weeks of starting. My biggest fear in life now is the possibility of suffering the same plight you have discussed. My life would be dramatically changed without appropriate medication. We are all at the mercy of our doctors. I like the idea <rthom> put forward of creating/compiling a national list of WED/RLS-competent doctors on the Willis-Ekbom Disease (WED) Foundation web site. God help us all if opioids are taken away from our treatment options.

God help you Ann find a competent doctor where you live.
Scott

I've talked to the Foundation many times about the list of doctors. It's very complicated - they do not have the funding to ensure that the doctors who say they treat it really can treat it. And, many doctors say they can when they can't. The best we can do at this time, I think, is for us to keep adding the names of good doctors in the sticky post we have for that. if you like your doctor and believe he or she is good, please add his/her name!

I hear you about the constant fear. My guess is that most doctors don't know we feel that way. Here's hoping your doctor stays with you a long time and if you ever need to change that you find a good doctor that will also treat you well.

[badnights]

Ann, are you back yet? Have you started the Horizant? Re the suicidal thing, I guess that means I'm out, since regular gabapentin did that to me, but I imagine you're no more likely to experience it than anyone else, despite the effect that low D had on you.

[ViewsAskew]

Ann, are you back yet? Have you started the Horizant? Re the suicidal thing, I guess that means I'm out, since regular gabapentin did that to me, but I imagine you're no more likely to experience it than anyone else, despite the effect that low D had on you.

Dr B said people have had very different experience with Horizant compared to gabapentin....but I'll believe that when I see it!

I did start it in CA. I'm back, but decided to start it there. One dose, 600 mg, doesn't do a thing for my WED symptoms. No effect at all. I DO sleep great, though. I am very tired the next day and need the Nuvigil he gave me to be functional at all. He said it wears off in a couple weeks for many. If it does, I'd increase the dose to see if more helps the WED. If it doesn't, no use taking it as I don't want to spend every day drugged day and night if I can help it!

[doety]

I've heard many others say a drug made them sleep but didn't help the legs. How can you sleep if you have WED symptoms??
Here's hoping you've found some things that do address all the issue you have! And hope you were able to enjoy being in the coast.

[ViewsAskew]

I've heard many others say a drug made them sleep but didn't help the legs. How can you sleep if you have WED symptoms??/quote]

I still am taking my full dose of methadone. On a good day, I take 20 mg spread out. On a bad day I take 25. I was hoping to use 15 with this. I tried 15 the first night and I did OK. But, that next night, I had to take 25. The following nights I tried 15 and kept the last 5 by the bed. The first night I couldn't sleep without it and the next night I slept for less than an hour before I woke up from a dead sleep with the sensations. Had to read for awhile while the last 5 mg kicked in.

I just wrote him (and he already wrote back) saying to give this dose 5-7 days and if nothing, then add another 600 mg. I'll try it tomorrow and see how drugged I am. I don't mind being tired for a couple weeks if it's eventually going to work. But, if I get to 1200 and the end of two weeks and there is no reduction, I'm not sure I'll want to go to 1800.

Here's hoping you've found some things that do address all the issue you have! And hope you were able to enjoy being in the coast.

I absolutely enjoyed being on the coast. My friend used to be in Long Beach, about 2 blocks from the ocean. She moved - she's in the hills about a mile from the ocean and has an ocean view from her front yard, which also has a pool and a lemon tree. Her very friendly dog kept me company each day while she was at work and I worked outside by the pool. Not a bad thing! We had an Oscars party on Sunday, which was also nice.

[Betty/WV]

I'm so sick of all this nonsense. And I'm sick of doctors, even though I know they do a lot of good. My neuro will prescribe me 10 vicodin at a time. Its not that I need it all the time but when I have a really bad spell I take it. I'm doing fairly well with the Mirapex. Except I have gained a lot of weight while taking it and it seems I either don't sleep or sleep to much. But--I take several meds that warn "may make drowsy, use care when drving"??????? Doctors always take a list of meds you are taking, don't they see this warning on more than one med? I have already had trouble falling asleep while driving. I don't thnk they even look at the list.

Question: I take .25 mg. of Mirapex twice a day. I am sick of taking medicine. I take meds. for WED/RLS, high blood pressre, high cholestrol, GERD, and I take Welllbutrin, which is supposed to help with pain. Thats about 10 pills aday. The weight I have gained is making my life miserable, I am depressed and even hate to go out anywhere. So, I decided to try to cut down on the Mirapex. I take 1/2 pill in the morning instead of a whole one and a whole one at night, this is on my own. I havent' even discussed it with my doctor. So far so good, I was afraid that I would have a monster episode of WED but so far I haven't. I have been doing this now for about 5 days. I would really love to cut down to half a pill at night also. But I suppose even if I could cut down more, I'm still stuck with this extra weight. I'm 77 and with the arthritis I'm not moving much, so I'm in a mess. And I hope you all don't get tired of my venting, this is the only place I can do that. No one else understands, cares or wants to hear my ranting.

I'm so sorry, VeiwsAskew, that you are dealing with this problem of getting your meds. Its bad enough we have to take these meds but they make it so hard even to get them. To think anyone would consider moving so they could get the medicine they so badly need. I hope you get this resolved soon. No one considers that WED can and does destroy lifes. As I look back, I can see how much WED has changed my life----for over 40 years. And for so long I didn't even know what was going on with me.

Ok, so I've unloaded some of my anxiety on you, so early in the morning too. Take care everyone and I wish you all the very best.

BETTY/WV

[Polar Bear]

Betty/WV - you know we are always here for anyone who feels like venting - and oh my... but don't we all get fed up with the different meds at different dosages and that's only for the WED never mind any other issues we may be trying to cope with.

Happy days that you haven't yet had a kick-back from your reduced mirapex, I hope it stays this way for you.

[ViewsAskew]

It's just plain hard to deal with everything. I haven't figured out how to deal with the extra weight. I lost some of it once, but gained it back. I'm trying, but it seems impossible.

But, Betty, good news that you are cutting back and it's working! Maybe with less of the drug, the weight will be easier to lose? Thanks for your warm thoughts. It's so nice to have such wonderful people here.

[badnights]

What I have most difficulty with is acceptance. Can we accept the extra weight without stopping the effort to lose it? Can we eliminate the stress and anxiety over it, without eliminating the desire to be rid of it? For me, it's not weight, it's loss of daytime functioning. I think the stress and anxiety are the same though, and the need to accept while still looking for ways to fix it.

[debbluebird]

I have not accepted the extra weight. This is not me. I have begun a another effort to loose weight. I also started water aerobics in Jan. It is working out great. Since I am hardly walking and using a cane, it's the only thing I can do for now. I go every Mon. Wed. Fri. for 45 min. It's harder for me to deal with food when I'm not sleeping. Since I restarted Mirapex last night and slept all night and into today, I feel better. I am determined to get more of this weight off. The only plan that works for me is atkins. Since I'm hungry all the time and hardly ever feel full, this plan helps.