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

Post by Sleuth »

Just to update you on my Mirapex trial. I am still on 1/2 0.125 mg., but not for very long. It worked for about a week during the day, but now the RLS is back just as before. While working during the day, I was having the most severe leg cramps. I was getting about 3 hours sleep a night. The doctor insists they are RLS symptoms and suggested I increase the dosage. I was hesitant to do that. The leg cramps went away but, as I said, the problems during the day have returned.

If I had to choose between being free of symptoms during the day and having leg cramps at night, I'd rather never sleep.

This sent me into a pretty bad depression. I was hoping that I could have a normal life again, so when it came back, the disappointment was beyond words.

I have put on about 4 pounds in this week. I am sure it it partly because of the severe constipation. None of my jeans button because my stomach is so distended. That has added to my depression as well.

I will be talking to the doctor today. I am sure she will want me to increase the Mirapex.

I just read a very good article on augmentation written by the University of Rochester. It explained it to me in a way that I could understand. The only thing I don't understand is if augmentation is permanent.

BTW, changes in vision are a side effect listed for Mirapex. It can be a side effect of some anti-depressants, so I'm familiar with it. Doctors often fail to mention this side effect.

Forgot to mention a new thing. I will get a very sharp pain in my leg or foot. It is short-lived but feels like an electric shock.

Dale

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

Re: rls back

Post by Betty/WV »

Hi Sleuth: Sorry to hear that you are having such a rough time. I too am on mirapex. My new neuro started me out on .25mg at bedtime, but I started having symptoms early in the day. He added .25 mg at 1pm. It worked good, although, I learned later the starting dose (from Dr. B.) was .125 mg. That all happened last August. But Dr. B. said to continue what I am doing if it is working. But I am leary of increasing the dose anymore, because of what I have read about augmentation. Taking it one day at a time. Hope you find relief. 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

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

Post by Neco »

I don't know if you have done so, but print out the Mayo Algorithm (link in my signature) and refuse to leave the office until she reads it, especially about augmentation..

Also print out that article you read and make her read that one too.

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

Post by Sleuth »

You think it's augmentation so soon?

I think she is familiar with the Mayo Clinic Algorithm.

I think I mentioned that I was afraid of trying medication because I would be heartbroken if it didn't work. Well...here I am...so disappointed because the Mirapex stopped working at the initial dose after a few days. I'm waiting for the doctor to call. I'm sure she'll want me to increase the dosage. I have visions of that happening every week or so. It is so painful to go through the disappointment of a medication not working. I knew I would have an incredibly hard time dealing with it and I am.

It merely brings home once again that I have this dreadul illness, that it will never go away and only get worse. It is hard to go on with that prognosis.

I think I should give up on the meds. I can't go through the disappointment. It is so incredibly painful.

I was so excited when I had no symptoms for two days, I actually started thinking of things I could do that I haven't been able to do for two years. That I can't is way too painful. Please forgive me, but there is absolutely nobody in the whole world I can say this to. They don't want to hear it. It makes them uncomfortable...I guess.

Dale

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

Different meds

Post by mackjergens »

Dale,
dont give up there are to many different meds that can help you, yes I know its hard when you find meds that do not work, but if you really want to find away to control your rls, then keep trying different meds, you will find one that will help. So many on this message board has gone thru exactly what you are going thru and finally found a med that helped control their rls and gave them back their life. Please do not give up.

go to www.rlshelp.org and you will find a very long list of meds that are used to treat rls.

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

Post by ViewsAskew »

I haven't a clue if it's augmentation so soon.....but I did augment on Mirapex within 1 week. So, it can happen. BUT - that is extremely uncommon.

So, yes, it could be, but it's still unlikely. A doctor, in my experience, would have a hard time thinking it was augmentation because most have never had someone augment that quickly.
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 »

My doctor called last night and, as I predicted, told me to increase the dosage to 3/4 of a pill, which I did. I did get one cramp in the night and got up because of it.

What I found troubling was her attitude to my two or three troubling side effects. She told me they were all due to other medical issues. That troubled me. I don't like when a doctor pushes you into something with no regard to your apprehension about side effects. It is as if they have zeroed in on one thing to the exclusion of everything else. I have had some real bad results because of this way of thinking, with permanent damage.

It is very easy for me to lose trust in a doctor who does this.

Dale

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

Post by ViewsAskew »

I'm reading a book about how doctors think....of course, everything everyone says these days I'm relating to this book.

Doctors can make cognitive errors - and they are more likely to make them with patients they feel are difficult. By difficult, I mean that they don't have easy solutions, they call frequently, they ask a lot of questions.

According to the book, the best thing we can do is to help re-orient them, especially if we don't think they are right or that they are missing our point, etc.

He also mentions how hard it is for many of us to do that.

When I get time, I'll write down some of the critical points. In the meantime, I highly recommend getting a copy. I bought a used one from an online seller for about a couple of dollars, plus shipping.
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.

Xarla
Posts: 4
Joined: Fri May 22, 2009 10:13 pm
Location: New Hampshire

My recent frustrating Experiences

Post by Xarla »

Before my RLS starts I have what feels like someone sticking my toe or heal with a needle or a big mosquito biting me. 5 min later the RLS will start.

I also get RLS when I feel very sleepy and dose off at the computer.

At nights it starts 15 min after I fall asleep when I feel very relaxed

If I drink alcohol I will have RLS.
Tranquilizers and some antihistamines have the same effect.

I've had RLS since I was a baby, but didn't have symptoms that were recognizable at the time until I was a sophomore in college.

I told my mother and she explained her RLS to me and it was the same. At the time we had no idea what it was. This was in 1962.

In 1994 I started taking clonapin as my husband had died, I was dating, and I didn't want to explain RLS to my date. I had one year completely free of RLS so much so that I thought it was gone. After that it returned and after I hit the max dose of clonapin I was changed to mirapex.

Getting off the clonapin was not as easy as the doctor thought it would be. I went through withdrawl which came mostly in the form of panic attacks.

Mirapex made me feel sick at my stomach, but food helped and soon I found a tolerable, effective dose. This went on with periodic increases in dosage for a few years.

Then I began to compulsively buy and eat.

I was switched to ropinirole which soon augmented big time so that I had RLS all day long.

I tried stopping the dopamine agonists entirely, couldn't do it at home as I had RLS without relief at nights, even when doing vigorous exercise. So I asked for help.

My doctor admitted me to the hospital psychiatric wing and they kept me under guard with a diagnosis as suicidal. The only treatment they gave me to help was lorazepam to keep me calm.

As you can imagine I was anything but calm.

After a few days of this torture, I decided since I was going to receive no more help there than at home, I might as well go home where I could at least paint walls etc. when I was awake at nights. I stained and varnished the living room dining area and began painting the walls. When the sun came out I would sleep. I felt incredibly lonely and depressed.

After the third week I read some articles by people with RLS asking why torture yourself without medication. I called my doctor and started taking mirapex again. This was a year ago. I'm taking .0125mg X2 a day. If I take more than that I start to have RLS earlier in the day.

I'm frightened about taking another "drug holiday' but figure if I keep this dose without increasing it, except when I have to take a long car ride or be on a plane; I'll have some bad nights now and then but also some good ones.

I also take tylenol with codeine for leg pain when I've exercised too much to stop the RLs and sometimes I find relief using trazedone.

I also began to have spasms down my left leg and stabbing pain in my big toe on that foot. Neurontin stopped that and I take 900mg before bedtime. It makes you dizzy and drunk at first so its good to start with a low dose and build up to what works.

Anyway, hang in there. There have been many times that I've thought of suicide, especially while trying to do that "drug holiday". But the good days make up for the bad ones and at least with some meds I do have good days.

I feel your pain. I've been there and I am there. Don't let yourself suffer when there is medication that can help keep you sane. Sleep deprivation is awful. Just remember, you are not alone.

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

Post by Sleuth »

I never had those stinging sensations until I started the Mirapex. They come and go just as quickly.

Last night I took a 0.125 mg. for the first time. The half pill was no longer working. I had leg cramps and had to get up after a few hours. I have only been taking Mirapex for one week and already I'm up to 0.125, which doesn't seem to be working either.

My doctor said she never gives more than two pills a day.

I am very nervous and am very concerned about my obsessive behavior. I am paralyzed with panic attacks when I try to take care of my little online business. I always had a hard time dealing with certain aspects of this. Now I can't do it at all.

Dale

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

Post by Sleuth »

Ann,

The biggest problem I have with doctors is if they know I suffer from depression. I never mention it, but when they ask for a list of medications, I have to tell them about the anti-depressants. That is the kiss of death. Then everything is due to depression. I will say it has gotten just a bit better through the years. Years ago, you didn't have a prayer.

Dale

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

Post by ViewsAskew »

Dale, that's one of the cognitive errors they make---assuming that everything is related to something else. According to the book, really good doctors don't ask any questions about your past treatments and don't want to know what other doctors have said or diagnosed you with.
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 »

Ann,

I have a very funny doctor story to tell you.

A few years ago (pre-RLS), I was looking for a new primary care doctor. I picked those who were closest to my house and who were affiliated with Mt. Sinai Hospital. Most were baby doctors. Hoping for the best, I went to see a young doctor who was only out of school for about five days. :?

She did not examine me. Rather, she sat at her desk in front of her computer while I told her specific symptoms of a particular problem I was having. She was frantically entering everything I said into the computer. I thought she was making a record for my files. No way. She was entering the symptoms into some sort of computer bank. After a few minutes, she said, "I have a diagnosis", which she read from the computer. Not once during this "visit" did she even look at me.

For all I know, she could have been Googling the symptoms. :roll:

I thanked her, left and never returned.

Dale

restless in NOLA
Posts: 1
Joined: Tue Jun 09, 2009 3:24 am

Post by restless in NOLA »

Hi Sleuth:

I am new to board and have been reading your interesting entries. I noticed your last post was on May 30 and I just wanted to ask how you are doing.

My mother had rls before it was called rls. she would tell me "don't talk about, because it will start". I never understood it until I had it myself. I think I have an exremely mild case and can usually control it by sleeping in a certain position.

My husband is a different story. He suffers from EXTREME rls. He was recently weened off the medication (Requip) because he is afraid of the side effects. Well, after 5 nights of walking the floor till 4:30a.m. every night, crying, waking me up at all hours for "help", he is now back on the medicine. He has resovled himself to the fact that he will probably be on this for the rest of his life.

He had a stroke 2 years ago and has had rls since then. He actually has it throughout his body. I have never seen someones' back and arms jump the way his does! It's scary!

I hope that you will stay connected to the "board" as this at least gives you an outlet for your thoughts and some positive feedback. I wish you the best.
Julie

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

Post by ViewsAskew »

Dale, I read the story and was so astonished I forgot to reply! That is truly amazing.

Restless in NOLA, my guess is that your husband is experience a very, very common side effect of stopping Requip or Mirapex. He can stop it....but not without help. Help is usually in the form of an opiate. Depending on how strong the symptoms are, he is likely to need a moderate or strong one. In one to several weeks, however, the symptoms will go back to what they used to be (unless it's worsened since he started it, which is possible). But, even if they've worsened, they are not likely to be nearly as bad as what he experienced this last week. I know - I tried to quit Mirapex twice on my own. Horrible, horrible, horrible.

But, I was able to stop is using an opioid. The question then is....what does he do? He can stay off of it and it won't be as bad as it was last week, but he'll still have problems. There are other drugs to try, too.

FYI, has he had his ferritin tested?
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.

Post Reply