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death is the answer?
Posted: Thu Feb 04, 2010 5:25 am
I don't know how you guys can stand it, can still be upbeat and keep on trying. I try and try to see the point and I can't. I can't stand it anymore, and it's only been a little over 2 years really bad. Nothing works, I've been thru the dopamine agonists, the suicide drug (gabapentin - that was fun), combinations with codeine, everything takes so long, 10 months to see a neurologist and all he did was cut me off the suicide drug and the codeine and a touch of ropinirole, and put me on 5mg oxycodone, and I tell you God help me it was like NOTHING like I was taking NOTHING and he left me like that - no recourse, no way of contacting him, no way of stopping the insanity - I have it 100% of the day now (is this withdrawal? or has it gotten worse?) and taking 5 mg oxy is like taking NOTHING and on day 3 of that I fianlly remembered I had refills of the zombie drug (Mirapex).
So I'm doing that now, taking Mirapex.
I'm almost out of codeine so I'm not taking that (what sort of emergency am I saving it for, though?) and that doctor of misery only prescribed 1 Percocet a day so I am not touching that either. So I take .25 Mirapex and 2.5 hr later I can sleep for 2-3 hours, then I take another, and eventually I sleep for another couple hours. Then it's dying to sleep all day and scared to take more Mirapex because of the problems with impulse control disorder and DAWS what a horror show that would be.
And I lie, what night is the same? That was only last night. Every night is different. I want to be dead, I can't see the point of continuing to fight this. I try to think of reasons - my sons need me - but they don't, and one of them has it too, and I think oh my god, his life is over, and there's no point for him to live either, and I have to make sure I don't say anything out loud because I don't want to bring him down into this hell of despair.
Logic tells me there's no point to keeping alive, I am simply a drain on the resources of the planet, and the only reason I am still alive is because I have a biological aversion to killing myself. I used to not think like this, I belived in the sanctity of life, that everyone had something valuable to contribute, that a random smile or act of kindness could have a ripple effect and be the cause of grand changes for the better in the world, but I can't avoid the corollory: I am also (especially now) capable of random scowls or acts of pettiness, and they are equally likley to have a ripple effect, and be the cause of great problems in the world.
I am exhausted and I want to sleep sleep sleep but the creeping malevolence winds its way through my wrists and legs and I want to scream because I can’t lie down and I can’t wake up! I am SO TIRED but I have to move, just standing does not make it go away, so I have to do something fairly active - - I will go and do yoga but not the stretching variety because my legs would scream in protest at the stillness HELP ME GOD I have to wake myself up and not feel the tiredness because I can’t bear being unable to sleep and I really don’t know how much more of this I can take and TO THINK THAT doctor LEFT ME after prescribing USELESS MEDICATION and he just LEFT ME - how would I have survived if I had not re-filled the zombie drug prescription?
Before I thought of refilling the zombie drug, I had only one option which seemed reasonable: I would go outside (it was colder than -30C, that's really cold) and sit in the snow and stab knives into my legs. I could see precisely where I would stab them - THERE in my left ankle slightly to the outside of the midline - THERE left quadricep right above the knee - and right side the same - and - and JESUS just all over, I would need lots of knives, not only my kitchen ones which I would have to sharpen first but also my bush knives.
What's reasonable about that? Maybe I want subconsciously to make a statement. now that I've written it out, it seems silly.
I am trying to remember what I am fighting for. Why is it that I wanted to live. Does anyone has a clue about this? how do I find me again? Is there still a me, or am I gone for good? I mean, am I just going to be fighting this monster for the rest of my life, living a half-life or an eighth-life or an itty bitty nothing life with nothing but fighting the monster in it? Because what is the point of that? Only to keep my son alive. But he won't die if I kill myself, he's 19, he's cool, so that's not working anymore! I am confused. What if there is a good reason to stay alive and I just can't think of what it is right now?
Posted: Thu Feb 04, 2010 6:28 am
Beth, I understand the dark place you are speaking from, and it's a temporary place. It all seems dark and hopeless and like you will never experience joy or happiness again. But it's a lie because no moods last forever. You will find the reasons to live if you hang on a bit longer. Suicide is a permanent solution for a temporary problem. Please don't do it. Your son needs you and others need you.
It sounds like you need to address 2 concerns immediately:
1) the depression that has caused to lose hope that your life could be good again. Please get some help with this. There are phone lines that you can call for emergency counseling, suicide prevention talk lines, and other ways to get help for this. Please reach out to these resources; they exist for you.
2) get relief from the RLS symptoms that ruining the quality of you life and are feeding into your depression.
I don't know what happened to the doctor who prescribed all those meds. There must be another doctor who can take over where he left off, and prescribe the meds that are more likely to help you, like a higher dose of the percocets. If you let us know the area in which you live, we might be able to recommend an RLS specialist who would be competent to treat you.
If you feel that you just can't go on another day with the misery of RLS, please go to an emergency room and tell them that you are so uncomfortable and so miserable that you are getting suicidal. Insist that they treat your RLS by current standards of treatment - being that mirapex isn't great for you, and gabapentin is bad, then you're on to the strong opioids. Tell them that the percocet was helping, but not enough. And don't let them give you meds that will aggravate the RLS.
If you have any questions or need to find a competent doctor in your area, please let us know. Or if you are willing to travel to see a good doctor, we can recommend a couple of them.
Hang in there and keep us posted.
Posted: Thu Feb 04, 2010 7:38 am
Beth, Susan wrote some very wise words. Please heed them.
Would you mind telling us the location you're in? I don't need the specifics, just the general area. No doctor should have left you in that situation and it's very important to find another doctor who can help with the RLS in addition to the depression. If we have an idea what part of the world you're in, we can potentially help you locate a doctor. No guarantees, but it's worth a try.
I've been in what seems to be a similar place. My guess is that all too many of us have. My RLS suddenly got much much worse just recently and I spent night after night, week after week, going on several months with little or no sleep, no relief, no help, and no doctor to turn to. To top it off, I lost my insurance so I didn't even have that to pay for anything. About 4 or 5 AM was always the darkest for me. I was absolutely desolate, rocking back and forth, my eyes closing, my body jerking if I stopped moving of my own accord, sometimes falling asleep for 15 or 20 seconds while in a Yoga pose.
Those moments feel like eternity. But, they are but moments. They are sometimes many moments strung together but they always have a beginning and an end, a time when you can potentially see that there might be another way. I can't tell you for sure that there still is a "you" but I know there still was a "me". My husband had forgotten what that me looked like because someone else possessed my body. I'd forgotten it because I'd forgotten everything.
And, one day, in a different moment, I made the decision to spend money I do not have and to fly to see a specialist for whom I no insurance to pay. I stayed with a friend, screwed up the day of the appointment, but the doctor saw me anyway. It took a few weeks, but sleep I did get. It's not perfect, maybe it never will be. But, my nights are not eternities anymore, they're just me waiting for the drugs to work so I can get some sleep. But, sleep I will.
It sounds to me as if you need a doctor who's not afraid of opiates and who will listen to you, to hear you, to honor what you need and what you're going through. We can do all of that here, but we can't do the next part: prescribe drugs that work for you.
Posted: Thu Feb 04, 2010 9:01 am
Bethf: You got some wonderful advise from ViewsAskew and Susan. I can only add to that, I CARE. Don't give up, things do get better. Maybe not perfect but in this world nothing is perfect. But with a doctor to help you, and meds to give you some rest things do improve.
I have had RLS for 30 or 40 years, sometimes years of desperation. Now I take Mirapex, klonopin, and sometimes tramadol. I am much better since taking them. How long they will work, I don't know. But if they stop then I will deal with that when it happens. My RLS isn't totally gone and I still have trouble sleeping, but things are better.
I'm not taking an opiate now, but they really do help. Sometimes when nothing else does. Or taken with another RLS med.
Keep fighting, keep trying, don't give up. Their are people who love you.
Its worth it.
I think the advice given, to go to the emergency room and just tell them (in tears, if that happens) what is happening with you, is good advice. Don't be afraid to do that.
I pray that you get help, very soon. Please let us know how you are.
Posted: Thu Feb 04, 2010 2:17 pm
If the neurologist who prescribed you the opiate class of drugs is still on the planet, all you have to do is telephone there, ask for some refills to be called in on your medicines (you mentioned both oxycodone and percocet), and you'll at least have those. If they won't refill over the phone, ask for an emergency squeeze-in appointment for THIS WEEK. See, the opiates DO work, because when you went off the other drugs and then took the oxy, you went into withdrawals from the previous medicines, and THAT's why the opiates didn't work for you. NOTHING touches withdrawals. So, if you can get more of those opiates from the same doc, and you're only on mirapex right now, taper slowly off the mirapex and slowly add the opiates, and in a week or two, you SHOULD feel relief from your legs, and thus be able to sleep.
If your doc has moved to China, then follow the advice of the other posters here on how to get to a doc that will help you. In addition to the opiates, klonopin is really good for relaxing muscles and also for sleep, altho SOME people have trouble with those and RLS (but I don't). Eventually when you can get in for a real appointment with another neuro in a few months or whatever, you can suggest he give you that, too, and you can combine the two drugs and you'll sleep even better. This is becuz the opiates might rev up your body a little too much, and so if you add a benzo, it'll sort of offset that. Or he could prescribe sleeping pills with the opiates, and that would help. But DO NOT take over-the-counter sleeping pills, becuz the antihistimine and other stuff in those will make your RLS worse.
The reason you are so upset and depressed is because (a) you're in pain, and (b) you are not getting enough sleep becuz of the pain. If a person is sleep-deprived long enuff, they'll get in that deep dark hole you find yourself in now and you cannot get back out to save your life. So, I think if you can get the opiates on board and out of any withdrawals from what you're on now, plus as a result get some good sleep for a few days in a row, your depression and anxiety will ease up. Depression is precisely why nothing in life seems worthwhile, so it's not a permanent frame of mind.
As for freezing and cutting your legs, most people who have RLS want to shoot their legs off, but obviously you must resist the temptation. Plez post back to us when you get a chance, and tell us what problem-solving things you have tried after reading what we've all said. And as a last resort, to get you thru this rough patch, you can go to the ER and scream and carry on, and tell them you haven't slept for X amount of hours, so could they please give you a sleeping pill so you can pass out in the hospital (do not ask for opiates) and get some rest in there for a day or two. Hopefully they'll instead prescribe a short-term number of sleeping pills that you can take home and then pass out. Get someone to watch your kids before you go to the hospital.
Or if worse comes to terrible, go to the health food store, and ask the clerk for sleeping pills that do not have antihistimines in it, AND also something that will prevent muscle spasms OR something that tranquilizes a person. Then take the sleeping stuff and one of the other two (anti-spasm or tranq), and you should go right to sleep. When you lay down to sleep, put knee-high compression stockings on (it stops the leg spasms), and when you wake up, take a couple ordinary alka seltzers, so you have SOMEthing to dull the leg pain you'll have the next day. I'm no expert, mind you, but these are some of my solutions and explanations based on my own experiences of losing it.
Posted: Thu Feb 04, 2010 3:47 pm
Dear Bethf: As the night is past, I hope you are feeling alittle better. As I read the replys to your post, it makes me remember again how caring the people on this site are. You can feel the compassion in their writings.
I know from experience the nights are terrible when you are suffering. There were times when I actually hated to see night come. The first time I posted on here was also in the middle of the night, if I remember correctly it was around 3 am. And I was so encouraged by the replys I got.
Take care, Beth. And please let us know how you are doing.
Posted: Thu Feb 04, 2010 4:57 pm
Beth, I am so sad to read your post, you are in such a bad spot at the moment.
The previous posters have given such good advice and there is little I can add in the way of advice with regard to medications.
But you must get relief, and you must get some sleep.
You are so depressed at present that it seems impossible to go on but relief can be found for your symptoms. The rls and the depression are likely feeding off each other and neither is giving the other a chance. And the middle of the night is the worst place ever.
Can you go to your primary care doctor. Or should it mean going to the ER please do so, please listen to what the previous posters have said.
Before proper medications I used to put my feet and legs into buckets of icy water and keep splashing it up my legs as far as possible for about 20 minutes until the symptoms would start to fade. Then I would try to get to sleep quickly because the relief would only last about a half hour. Many nights I walked for hours around the house in tears wanting to saw my legs/arms off.
""You have said that you don't know how we can stand it, and be upbeat."" We have been fortunate enough to have found this site and to have learned from the experience of others. But we still have to keep on trying, nothing works for us all of the time.
Many of us have felt as you feel now, but with a decent doctor and medications we have gained some semblence of normality. This varies from time to time and from person to person.
Please come back and post and tell us how you are.
Everyone on this site understands what you are saying and how you are feeling.
We want to help.
Posted: Thu Feb 04, 2010 10:08 pm
I am feeling better today, but it comes and goes. Thanks to all of you from the bottom of my heart, I don't know if it does any good but at least it makes me remember there are humans who care and KNOW (even if my new neuro is not one of them). (He must care, how could he not? He just doesn't know.) (How could he know and still do that? He couldn't). I am sorry to have been so selfish and ranted like that, I just don't know what to do anymore.
I was so badly hoping/expecting to hear from my family doctor today, she is really good and caring but does not treat the RLS, and she tried to talk to the neuro after 2 days of hell but he doesn't live here, he visits from Edmonton every 3 months - I live in the NWT in Canada and you're not going to find any RLS doctors here because I've looked. She couldn't get hold of him that day, which was Friday, so I really thought she would be able to talk to him Monday, but I heard nothing. She had to do community visists Tues and Wed and is back in town today so I really thought for sure I would hear from her today. I am so sad. I don't know what to do.
I paid my own way to a sleep clinic in Calgary last Sept, but they were so slow getting back to me, I only had the followup by phone a little over a week ago, but I had just seen the neuro that morning so the sleep clinic doc didn't advise or prescribe anything for the RLS, believing that was covered ! It's like an evil coincidence that I saw the doctor of misery BEFORE I talked to the sleep clinic - and before I got a refill on the codeine from my family doc. Maybe I should request a refill anyway? I will do that. I cannot get a refill on the Percocet because that was prescriebd by the neuro and he said one a day and I will not go over that because I don't want him to think I'm an addict and never let me have any more, then what hope would there be for a normal life? None. Besides, I can't request anything from him directly, I have to go thru my family doc and she's already trying to reach him.
The sleep clinic tells me I have sleep hypopnea (borderline) and my family doc tells me I'm depressed (well, ya, I guessed that) and of course the RLS and I've lost 15 pounds in the last 6 months though I was not overweight to begin with so now I'm a scarecrow. What's that, the depression? I assume. I dunno. I tried Wellbutrin but it made the kicking really bad, plus it was a dangerous combination with the gabapentin, for feeling suicical - I felt very wierd, fragile, completely off, soI stopped taking the Wellbutrin after a little over a week. I am terrified of trying any other anti-dperessant until the RLS is under control. Even then.
Wow. So much advice. One of you told me exactly what I used to tell myself to get through depression before, that depressions were temporary and would go away eventually, and had nothing to do with anything that was happening in my life. But it's not working this time, I've been down for months, and I can't understand what it is about life that I used to like, that I wanted to keep. I will tell myself something new, you have given me the idea: it is just the suicide drug that's still in my system, I took it for 10 months, it's going to take a long time to get it out of me, and once it's gone I'll be better. Is that a good tale to tell myself?
And I will request a refill on the codeine and see what she says to that. Maybe she will call me. That would be nice. She could tell me if she's talked to the neurologist yet, and gotten his advice on how to proceed.
Wouldn't it be nice if we were in a room together chatting. I would maybe laugh at myself even.
Posted: Thu Feb 04, 2010 10:25 pm
I am very glad to see you posting today, and that you are feeling a little better.
Hopefully you will get to speak with your doctor very soon and get the codeine refilled.
My understanding is that medication for depression takes a few weeks before you start to feel better and I hope you and your doc can come up with an antidepressant that does not affect your rls. I thought Wellbrutin was rls friendly. Usually most side affects from medications ease off after a few weeks, but not always.
I really hope you get to speak with your doctor and get some reassurance, get some codeine, and some sleep.
Posted: Fri Feb 05, 2010 12:47 am
Beth, I'm also glad to see you back here today. I had a couple of thoughts, probably dumb ones but that doesn't keep them from popping into my head...
Can you call your family doctor and insist that you really need to talk with her and that you really need some relief from the RLS? And if that doesn't work maybe call the sleep clinic and tell them that you have no effective meds for the RLS because no, the neuro didn't prescribe any for you.
Do you know that antidepressants will make your RLS worse? There is that possibility and it happens to a percentage of people, but many of them take them and do OK. We've only ever been able to find one study about that and the results were that less than 10% of people had worsened RLS from taking SSRIs. Maybe even something like St. John's Wort might help you and it doesn't seem to worsen RLS, although it does have a million drug interactions. Then there's the usual vitamins and minerals - those of us who don't get enough sunshine need lots of Vitamin D; omega 3s can help with depression as much as SSRIs in many people, and exercise can also help.
Can't you get codeine over the counter in Canada? Canadian aspirin or something? It's probably not much but it could help.
Honestly it is so frustrating to hear of people who cannot get adequate treatment for RLS. Most of us who are here on this forum have been in that situation at one time or another and it just seems barbaric that doctors let you suffer like that.
Keep on plugging along and keep looking for doctors to help you. Someday this will all be a bad memory and you'll have the treatment you need. Really. You seem intelligent and assertive and you'll get the help you need somehow. Let us know how we can help.
Posted: Fri Feb 05, 2010 4:00 am
Beth - you're right, I can't think of any docs in NWT. BUT - one of the very good RLS docs is in Quebec. Not a hop, skip and jump, but if worse comes to worse and you have to travel, at least you have a Canadian resource. Also, his office may be in touch with other doctors who might be able to help. His name is Jacques Montplaisir (hope I spelled that correctly).
Hopefully the Calgary clinic will handle it correctly, but in case you need a resource, you have one.
Susan and I have both had to travel from the US Midwest to California for treatment. I can't find anyone locally to help me. One day I hope it's easy, but for now?
You know, I don't think for a moment that those of us who have it severely will ever have a normal life. But I don't spend my nights thinking about suicide anymore and I can work and have a reasonable relationship with my spouse and friends. It's not 100%, but it's worth it.
Posted: Fri Feb 05, 2010 7:10 pm
Ann, Susan, Betty, PolarBear, dogeyed, and everyone who didn't respond because so many already had:
Thank you. I am feeling so much better, I think because I cried out loud (I am trying not to be embarrassed but I am - but I'm relieved too), and because I've actually been sleeping the last 3 nights (well, parts of them). Which means the bad RLS must have been withdrawal; it's not as bad now. I didn't think you could get withdrawal from gabapentin, but maybe you can get it from anything.
I'm still useless and can't work, which breaks my heart, but I am taking all the advice you gave and using it to make a plan, to build hope. Jaques Montplaisir is my extreme backup plan. He's pretty far away; but as you said, I won't have to leave the country to see him (although we joke about that - going to Quebec is like going to another country! Actually I was born there. But I don't speak much French - I was a minority, an English Quebecker). The clinic in Calgary is my not-so-extreme backup plan. And my Plan A is to wait until Monday - because I have realized I can survive on the pramipexole and Percocet - and ask my family doc to call me then.
Apparently you can get Tylenol 1's over the counter in Canada, they have 8 mg codeine in them, but they have 15 mg caffeine too, so that would completely counteract the benefit, for me anyway. Honestly, though, I didn't even think of that. But I was taking 90-120 mg codeine per night plus the gabapentin and a tiny bit of ropinirole (Requip), so I would have to eat way more than 15 pills (120 mg) to get any help at all. And by then I would have OD'd on acetominophen (325 mg/pill). So ...not the solution.
Interesting statistic about the SSRI's - that means they're worth a try because I could be one of the 90% !!! who don't get worsened RLS. I know Wellbutrin is supposed to be one of the good ones for RLS, which is why I requested it from my doctor when she wanted me to take an anti-depressant, but it clearly caused increased RLS symptoms for me. Next time, PolarBear, I will stick to it long enough for it to start working, I hope! But I think I need to know that I can sleep while taking it, that my doc can up the prescription of whatever I'm taking for the RLS if necessary. I am too scared of it to try it again right now.
Ann and Susan: When you travel to California for treatment, do you get prescriptions, and then fill them on the east coast? How do you get re-fills; do you have to ask the west-coast guy every time? Do you have a primary care physician where you live, who is kept aware of the west-coast guy's prescriptions? how does that work, is the east-coast guy happy with the arrangement?
Posted: Fri Feb 05, 2010 8:16 pm
Beth, Its great to read your post, you sound so much more positive and proactive.
What a difference a day or so has made.
Have a good day.
Posted: Fri Feb 05, 2010 8:36 pm
Beth, it is so good you have a plan and have some hope again. This disorder really IS treatable and you'll get there. And it's good to cry. Really. Crying makes your brain release chemicals that make you happier. Being able to cry openly is a sign of emotional strength, not weakness. (That's what I tell myself, too.)
Ann and I go to LA to see Dr. Buchfuhrer. He's originally from Montreal, but is a native English speaker, complete with Canadian accent, eh?
Ann and I are both actually in the Midwest. He actually sends prescriptions by FedEx, and then we can get them filled locally. I know that laws vary from state to state here in the US about what prescriptions can be filled by out of state doctors, but I haven't had any problems here in MN. You could check with a local pharmacy on your laws in that regard. He's awesome about answering phone calls and emails; usually the same day.
I actually emailed him yesterday about my own treatment, and added a question to him about what would he tell people who are just at the end of their ropes. He said we could tell that people that in the hands of an expert, over 95% of people with RLS get over 90% better, and that usually just knowing that is enough for people to keep pushing until they get good treatment.
He also reminded me that there there is a chapter in his book, "Restless Legs Syndrome" on the process of finding a doctor. (I was just interrupted by the doorbell with the FedEx guy delivering my prescription) Basically, be persistent, educate yourself (his books, the Mayo clinic algorithm - see the "New to RLS" section of the message board), and remember to try not to take out your frustration on the people who care and are only trying to help.
I know that I've had such dismal experiences with so many doctors that often I go into the appointment "loaded for bear" and look for opportunities to "shoot" the doctor, so that stuck out for me in the book.
I can so relate to you in so many ways. I barely made it through the process of getting treatment for my RLS; I was so depressed. I think that the people who stick around this forum have all been there and that is why we so want to encourage people. And the thing about feeling useless because you can't work. Ugh. I worked so hard to become an ordained minister and because of my own illnesses and family illnesses haven't been able to work for years. And it doesn't matter what work you do, it's about feeling like you're a part of the world. But you'll get there, and so will I. Now I have tears in my eyes...
Keep plugging away until you get treatment. There are competent doctors out there who want to help, and you can find one.
Posted: Fri Feb 05, 2010 9:08 pm
Hi Bethf: I was so encouraged reading your latest post.
You sound so much better, but I know, there is still a long way to go. Susan, ViewAskew and Polar Bear are so knowledgeable and encouraging. Their posts have kept me going. Thats because they have been where we are and understand what its like.
And please don't be embarassed. I did the same thing you did. I got on this computer in the middle of the night and poured out my heart and soul. And it felt so good. Especially when I found out there were people here who knew exactly how I felt. And what I was going through.
Someone said, in one of the posts, to get as much knowledge about RLS as you can. And Doctor B's book, "Restless Legs Syndrome and Your Sleepless Nights". Everyone with RLS should have this book, it is so good. I got it from Amazon.com. I also got "Clinical Management of Restless Legs Syndrome by Dr. B, and others. A wealth of information.
I will be watching for your posts, and hope you continue to improve. Take care.