Not Taking Any Meds?

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.
Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Not Taking Any Meds?

Post by Sleuth »

I am having a hard time with the side effects of the meds I've taken. The hardest to bear is the increased depression. It is so bad that I am afraid one night in despair I'll try suicide.

When I read the boards, I become even more frightened. Reading about all the experimentation to find the right combination to only find it offers relief for a short time. Then the whole experimental procedure begins anew. The fear of making the symptoms worse is always in the back of my head because of my bad experience with Abilify.

I am at the point where I'm trying to decide...which is worse; the illness or the cure.

Does taking medications help slow down the progression of the illness? If not, I may just suffer through. I have no real life with the symptoms, but if I'm suicidally depressed, what life do I have?

Dale

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

Dale, do you see a therapist or anything like that? Because I think you should have someone to talk to..

The county offers free services for counseling on numerous issue, dealing with medical problems, dealing with depression, etc..

Is the illness worse or is the cure?
Well that depends on what the cure is my friend.. Unless you are taking painkillers of some kind, the "cure" has the potential to backlash or stop working / making your symptoms worse..

Its a really difficult spot to be in, because its hard enough to get painkillers when you're actually IN pain.. I'm not sure what else I can say to help you.. But you may find comfort having someone to talk to a couple times a week, so maybe you should look into that.

If your income is low enough you won't even be charged for their services.

Polar Bear
Moderator
Posts: 7955
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Dale, please listen to Zach.
He always talks good sense

Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

As Zach noted, there is not right decision.

For me - just me - I couldn't live without the meds. The difficulty I went through for two to three years to find the right meds is gone now. Now, I have a life. Now I can go to the theatre, a movie, a concert. More importantly, now I can again work and see friends and be a friend. I had none of those when I was without treatment.

When we were working it all out, I had none of those, either. So that stage might have been a wash for me compared to not being treated. But, I couldn't have gotten here without going through there.

I was slowly losing my life for 15 years, getting more and more tired, less and less functional. All together, about 20 years was affected to the negative side. I've now put together about 4 years to the positive side. I'm looking forward to the next 4 being even better.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

I have tried to find a therapist, but can't. It's very hard to find a therapist who takes Medicare. I don't qualify for free care either. My whole life is between a rock and a hard place. There's nowhere I can turn to find a bit of peace or happiness.

My RLS has just gotten so much worse this past year. I can't believe how the symptoms have increased. Right now, I have no life at all. I can't make plans of any kind because of the RLS. I have no friends and spend all my time by myself.

I don't know what I did in life to get this dreadful illness. I feel as though I'm being punished for something...what, I don't know. I'm sorry if I sound sorry for myself, but I don't have any hope of a better day ever coming my way. I am so depressed, it is hard to make any decisions about medications or anything else for that matter.

The last few months, I have been becoming less and less functional. I am tired all the time. I can't think straight. I have stupid accidents. I just want to go away someplace where I can rest. I haven't rested in two years.

I'm supposed to take half of 0.125 mg. of Mirapex tonight, but am petrified to take it. I read the side effects, which sound like they'll make me feel even worse.

Dale

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Dale, I can only imagine how hard this is. I wish I could help in some way.

Please reconsider taking the medication. 1/2 of a .125 mg tablet should really reduce your chances of any negative side effects. Is it possible? Yes. But, 80% of people who take this drug are just fine with it and have no problems. I DID have a bit of trouble sleeping the first couple nights I took it, but I was taking 4 times what you are going to start with. As soon as I cut it and took less, then I was fine.

It's almost impossible when you're depressed to see that there are options or that anything will work. It's important to try and find someone who will help you. I've often found that there will be someone who will work with people to find a payment plan that they can handle. You may have to call more people and it's hard work, but that person is out there. Sometimes it's thinking of the way to ask that gets you what you need.

I did a quick search and came up with this locator.

This sitehas many links; I'm not sure how many are helpful, but I imagine that at least one of them will net some good information for you.

RobinHood seems to offer links to many potential services. Calling them may help guide you to find a place to help you.

I can bet it will take a bunch of calls, but I can't believe that there is NO provider that will help you. I am just certain that there are people who will either take the Medicaid/Medicare or will simply take you as a patient anyway. Most practices do a certain amount of gratis work.

I hope you can hang in there. This is a very tough place to be. We're here, too, for what that is worth.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Thank you so much, Ann.

I don't qualify for any of those type of programs. I have too much money for those programs. I live on my social security, and a bit of savings, but that is too much money to qualify for any assistance here. I tried over the past three or four years, but they would not accept me. Just another of those between a rock and a hard place situations.

I will tell you a little story. I was seeing a therapist for twenty (20) years!! When I lost my job and didn't have the money to pay her, she dropped me.

Dale

Polar Bear
Moderator
Posts: 7955
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Sleuth, I am so sorry for how you are feeling.

Being here in the UK, I don't know how things work over in the US, but please find someone to talk to. Perhaps there is the equivalent of what we call The Samaratins over here. A 24 hour line where you can talk to someone for as long as you want, and they could give you advice regarding therapy when in your financial situation.

I so wish I could help, and I think Ann is correct when she suggests taking just a little of the mirapex.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

Slueth,
Go to the ER of a hospital and tell them what you have told all of us about your rls and how depressed and scared you are. I honestly think they will find a way to help you. you do have medicare and so they will see you and probably will know of some Dr who will take your medicare payment for seeing and treating your depression.

There is one place you can turn to for peace and happiness and that is YOURSElF! you must dig deep down and find yourself, trust me I know how hard it is to have rls and no medical help. I had to deal with nightly rls for over 20 yrs. lived on 2-4 hrs of sleep each night. Back then a Dr would almost laugh at you when you tried to explain the creepy crawlies in legs. Finally you just quit telling drs about your legs and learned to live with it. It was a terrible situation to be in, but you just had to know that life must go on.

I found that when rls kicked in, I just had to get up and get busy doing something, that keep me on my feet and moving, I ended up walking around the house every night almost all night long. But I made it . as hard as it was.

I can tell you this is just one of many stories that RLSer's on this message board, so many of us have spent half our lives walking the floor at night, because Drs didnt know what rls was back then, so we just had to find ways to cope. I know I learned that I had to stop walking around saying "Why me' I just had to get up and get busy, and kept my mind on something else. I discovered the more upset I became over having rls, the worse my rls became.

There is so much more medical help now. please do not be afraid of trying some of these meds, just start out at low doses and if you feel a med is bothering you then stop. There is a very long list of meds that can be used for rls, you will have to do some trial and error, but it certainly is well worth it once you find the med that will help control your rls.

just remember going without sleep can be just as dangerous as any med you take.
Read and educate yourself all about rls, that will give you power to find help for your rls.
Do not give up, this disease is a horrid thing to deal with, but its not like having a cancer or other killing disease. So try to dig down deep inside and find the positive side of this!! Its there!

Here are afew things that I found helped me. hot baths,would take 2-3 a night.
positive thinking. stopped trying to stay in bed, just got up and got busy doing something to stop the creepies and settle my mind.

Going outside in back yard and walking around for awhile sometimes helped.

Staying calm, I discovered helped alot.

Sitting in a rocker recliner and rocking, then when I felt legs stop I just would recline back and go to sleep, because if i got up and walked to the bed, alot of times the rls would kick back in.

But sitting in rocker, at least you can sit and relax some while keeping your legs busy. I could even watch tv at times by doing this.

I did try to figure out a way to tie myself in a corner standing up to sleep, but never figured out how to do that.*L*

keep us posted as to how you are doing! Just remember that you are not alone in this, eveyone on this websites knows exactly what you are going thru, and look at how many of us have continue to fight the fight till we found a way to control our rls.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Sleuth wrote:Thank you so much, Ann.

I don't qualify for any of those type of programs. I have too much money for those programs. I live on my social security, and a bit of savings, but that is too much money to qualify for any assistance here. I tried over the past three or four years, but they would not accept me. Just another of those between a rock and a hard place situations.

I will tell you a little story. I was seeing a therapist for twenty (20) years!! When I lost my job and didn't have the money to pay her, she dropped me.

Dale


Dale, that was a rotten thing to do!

And, I am sure many others would have done the same. But, I'm equally positive that there ARE at least some doctors who WILL help you for e reduced fee or who WILL take medicare. I am positive. It's all about finding the right person, which is not always an easy task.

My whole life, people have called me lucky. When I need something, I almost always get it. When I have little money, I find a way to get things.

But, I don't think I'm lucky. I just believe that things will happen and I will get what I need. I consistently seem to find that all of us get what we expect to get (not every time, but generally). If we expect that no one will help us,.....for some reason, we generally don't get help.

It's hard to stay positive sometimes. And in your situation I can see it is a monumental task, especially if you are clinically depressed. But, I hope that you can try. What do you have to lose? Little, I'd say. And if it doesn't work out in the long run, you can say I told you so. But, just for a couple of months, act as if. Act as if someone WILL help you. Act as if you deserve it. Act as if it's natural for someone like you to get exactly what you need.

You never know. Sometimes like can be amazing.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

I did take the Mirapex. I slept very well, but had been crying the whole day which could be why. I am having RLS symptoms already at 7:30 am. It has affected my eyesight as well. That has always been a problem with meds. I wear trifocals, so can't get new glasses to accommodate the changes in my eyesight from different doses. It would be too expensive.

I have tried so many times to be positive, only to have my heart broken. I have learned through a lot of hard knocks not to expect anything. That way, when I get disappointed, it isn't as painful as it would be if I had high hopes.

Dale

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

re: not taking any meds.

Post by Betty/WV »

Hi Dale: I've been reading your posts and the replys. I feel so bad for what you are going through and I think the friends here have given you some good and caring advise.
We have all been through similar trials. I too was afraid to take the mirapex but was desperate. At first I was put on .25 mgs. at night but my symptoms started coming back early in the day so my doctor added .25 mg at around 11 am and the one at night. That helped. From reading on this site I knew not to keep on increasing and increasing the meds. And I haven't I still am on the same dosage. And I have been sleeping better than I have for 40 years. Still have some break thoughs but nothing like before the Mirapex. Down the road, something might change, but for now I will appreciate the relief I am getting. Whatever happens later, I'll deal with it then.
Over the years, I have been to many doctors, tried many meds. cried alot of tears. You just have to keep on keeping on.
I have found much comfort and help from this site. It has been such a support system. Friends and relatives don't understand.
So, hang in there, Dale, and don't give up, keep on trying. Think of it as a battle, which it is, and make up your mind you are going to win. If not the whole war at least you can find ways to make it more bearable. As most of us on this site has.
We are all rooting for you. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Thanks, Betty.

I have taken the Mirapex for two nights now. I can't remember when I slept as well.

I am very nervous and high strung, though. I haven't stopped crying. Then, again, I was crying before I took the medicine, so I'm having a hard time judging whether it has made me more depressed. What is more depressed than depressed? :roll: Makes me think of what is the sound of one hand clapping.

I will keep taking it at the same dosage. My doctor is out of town until next week, so can't talk to her about the dosage anyway.

My biggie side effects are blurry vision and severe constipation. Don't laugh, the constipation is a real problem for me.

Dale

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Not taking any meds

Post by Betty/WV »

Hi Dale: I'm not sure about the blurred vision, never heard of that side affect. I've never been constipated from the Mirapex but once in a while I also take tramadol for pain, and that will constipate me. No fun. And I do have trouble with depression at times, but don't connect it to the Mirapex, that has been a problem with me even before I went on the
Mirapex. :?

Weird thing is-----we are all so different, yet all the same, if that makes sense!!!

There are weird side affects connected to Mirapex. And that concerned me. But my neuro didn't seem worried and I was so miserable I decided to give it a try anyway. I told my husband to keep his eyes on me, and see if I was acting weird. But so far I think I'm just normal, whatever normal is.

Being a perfectionist, I don't know if that would make things worse or not. With RLS it is always a give it a try and see what works.

Wish you the best, don't give up. BETTY/WV :)
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: mirapex & what is normal?

Post by Betty/WV »

Hi Dale: In my previous post I mention, being normal?????
I just read a quote in a post that I thought was cute, it said "Normal, is just a setting on a washing machine:" BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Post Reply