I'm new and want to share my experience

[karalea]

As the subject line reveals, I am new and want to share my story up until now with my attempts in seeking treatment that works and is consistent. I feel that I have reached an impasse and am open to whatever suggestions, comments etc that people want to make. I am a 51 year old single mother of a 14 year old daughter. I have had RLS for 15 years and have been treated with Dopamine agonists (Requip and Mirapex). I dosed out of these meds while at the same time I developed a compulsive eating problem which caused me to gain 70lbs. The neurologist I went to weaned me off the Dopamine agonists and put me on Methadone (at my urging since nothing else I had tried worked). The Methadone made me very tired and I went from being an insomniac to wanting nothing more than to sleep all day. I am now weaning off the Methadone and am down to 5mgs. I am also taking Tramadol 300mgs SR which is not relieving all the pain. I feel that I will have no choice but to go back on the Dopamine agonists. I now have HTN and high cholesterol as a result of the compulsive eating resulting from the medications. My Dr, who has not been the one to consistently treat my RLS is suspicious of me and has made implications that he thinks that I am an addict. I got his name from an RLS website thinking that surely he would know what he is doing. He doesn't even know about the meds he is prescribing and is losing patience with me. I need him because to get into a pain clinic I need a referral from him. It is so miserable not having a normal life with pain and sleep problems but to have a doctor imply that I am an addict makes me want to shoot myself. It frustrates me to a point in which I have no words. I feel like I am coming to the end of the road with this disease! My daughter depends on me and I feel alot of pressure to keep up a happy front which is getting more and more difficult. Can anyone relate to this?

[ViewsAskew]

You're not at the end of the road...just a fork. I've been through several forks. They look like ends, and they are in a way, but not THE end, if you get my meaning.

If you tell us your general area (not your exact location, of course, but something like close to Vanvouver or Southern California), we might know of a doctor to see.

What is HTN? Hypertension?

Please consider not going back to pramipexole or ropinerole as a daily drug. Most of us who've augmented (all as far as I know), have augmented again when we went back. At least if we went back regularly. Additionally, that doesn't help with the compulsion issues at all. I also understand the issues with methadone - I spent two years feeling like a zombie when I requested something new.

Because I augmented very quickly (within a week or two), I knew I couldn't take a dopamine agonist daily. After failing several other opioids, we hit on the idea that I'd take methadone 1-2 days, then pramipexole 1-2 days. I did that for two years. No augmentation and a LOT more energy. But, I still had some of the nasty side effects from the pramipexole, including depression. Eventually I'd had enough. For the past 8 months, I've been taking 1/2 dose pramipexole and 1/2 dose methadone for two nights, then one night of methadone. This is better - fewer side effects - but I'm more tired again.

As of last Friday, I started rotigitine, also called Neupro in the US. It's dopamine agonist (DA) patch and supposedly very few people augment. Not sure about compulsion issues. I plan to use it for about a week, then take 2 days off on methadone. Even though you supposedly don't augment, I am not taking that chance.

The key to me doing all of this is a REALLY good doctor. And, he doesn't live near me. In fact, I fly 2000 miles or so to see him. The rest of the time, we work things out through email or he works with my primary care doctor. Depending on where you are, there are GOOD very knowledgeable doctors in Texas, Georgia, Maryland, Minnesota, Southern California....and I'm probably forgetting a few. I fly to Southern Cal because I like that doctor and knew him prior to me needing a good doctor.

When you say you have pain, is it completely relieved when you move? The reason I ask is that there are sometimes two disorders at the same time and one may be masked by the sensations of WED that make you have to move.

Oh - two things. What is your serum ferritin level? And, do be careful when you stop the tramadol. It causes dependence very easily. Just taper and you'll be fine - I cut down 50 mg every 3 days, I think and it was fine. When I stopped cold turkey, I was NOT fine!

[debbluebird]

It sounds like they started you on too high a dose of the Methadone. I always start low, even cut tabs in half sometimes. In regards to your HTN (hypertension) and weight gain, that is common with the Mirapex and Requip. Most of us have gained weight with them. I watch my salt intake which helps with the HTN. There were a couple of times that my legs puffed up with fluid, so I stopped all salt for a couple of days and it went away. Ann is right that you will probably augment again. I augmented, so I stopped Mirapex. Now I only take a very small dose of Mirapex 0.125 mg at 9 pm. plus I take Methadone 5 mg at 5 pm and 5 mg at 10pm. Also I don't drink any caffeine, or diet drinks or other no sugar foods, because of the aspartame, both cause WED. There is a whole list of things that cause WED on this site.
When I first started the Methadone it caused nausea and some sleepiness, but now it doesn't. I got used to it with time.
I would also look for a new doctor. You might try to find a sleep doctor in your area.
I hope some of this helps.

[badnights]

karalea
Lots of us can relate to what you describe. It's appalling when your own doctor thinks you so wrongly of you. Is it the neurologist who thinks that way, or is there a GP involved as well?

Usually, DA withdrawal is handled with a strong opioid (like oxycodone or hydromorphone) then the long-term residual symptoms are treated with a less potent opioid or a combination of opioid and anti-convulsant, or DA and anti-convulsant. It's unusual to move straight to methadone from DA's, without trying the less potent opioids and other non-opioid drugs.

Combination therapy works for many of us. Its greatest benefit is that we can use lower doses of each medication, thereby reducing or avoiding side effects, tolerance, and the possibility of addiction.

I would put it to the neurologist that you have given up trying to figure out what is best, don't know which way to turn, and that you will leave it in his hands, except that you will not use a DA again, at least not right now. (You may someday consider trying a very low dose of DA to supplement another therapy).

It is a rough thing to have to deal with all that you are dealing with. Being thought of as a drug-seeker adds unneeded misery to an already miserable situation. Have you spoken to your daughter about the causes of the disease, the symptoms, the impact they have on your sleep, and how chronic sleep loss affects mood, cognition, and health? Has your daughter any indication that she may also have the disease? Though we don't want to burden our kids with our problems, they will sense them regardless of what we do. Maybe she can be an ally and source of support for you?

How long have you been off the DAs? Has the compulsive eating abated and is it easier now to keep your bp down?

[karalea]

Thanks so much to everyone that has responded to my post. I have had a week of hell but I now found a pain Dr that is very wonderful to work with. He is very patient and willing to try whatever I might need. I tried MS Contin and was up to 60 mgs with insufficient relief, meaning that I could not fall asleep without the symptoms coming back. The MS Contin did relax my legs to a point where I thought it was going to work when I was at 45mgs but I was wrong.

The last 3 nights I have taken Oxycontin 15 mgs 1 tab at first symptoms and 2 tabs q 4 hour after. The first night I was thrilled because the Percocet completely relieved my pain and I slept like a baby. The problem that I am finding with this drug is that I feel similar to the way I felt with Methadone. It seems that the better I can sleep and the longer, I am finding that I fall into a horrible mental situation in which I feel out of sorts, depressed, unmotivated, disconnected and unable to feel any feelings. I usually have things that I plan to do with my day when I wake up.

On Oxycodone, I wake up feeling tired and have stayed in bed for 2 days. I get panicked because I worry that I will have no choice but to be like this mentally or have no pain relief and I work myself up into a place where I need to take Clonazepam to relax. I am rather isolated meaning that I am not married and don't have close friends or family to talk to. I have cried so much the last couple of days because the isolation tends to make everything feel worse. Then I wonder if the mental stuff is my imagination and I question myself.

It is this viscous cycle where I lose complete trust in myself. I call my physician and I think he may even be questioning me. He said that the Oxycodone is short acting and should be out my system by the next day. I swear I feel just like I did on the Methadone. The Dr told me at the time that it was me and not the drug, yet when I stopped taking it after the withdrawal symptoms, I felt completely normal again (minus the severe pain) and motivated to make the most out of my day. This week my symptoms have been much worse.

Today I had pain all day and the symptoms have been starting much earlier as a rule. I weaned off Mirapex and Requip in April but had to take 3 doses of Requip and 1 of Mirapex in between Dr's. Does this mean I am going to go through the withdrawal from this all over again? If so, how long will it last? Have I made my disease permanently worse by taking a few doses again?

I read somewhere that when a person augments, goes off the meds and returns to these drugs the disease permanently worsens. I also read that once taken off, a person should never go back to these meds. If that is the case, then why was my neurologist going to put me back on Mirapex? These drugs do work for me. They actually work better than any other meds I have tried except for the compulsive eating.

I am scared that they will never find anything else again. I also feel like I am going crazy. Has anyone known of anyone that has gone on disability because of this? I don't think I can go back to work if I cannot find some mixture of drugs that work. I am so discouraged. Thanks to anyone that reads this. I know it is long. God bless you all that have to live with this too!

[debbluebird]

I'm so sorry for your situation. How long has it been since you took the three doses of Requip and one of Mirapex ? Now, I'm just guessing, but I think a week should do it. When you are taking it every night, then it can take up to three weeks or so. I augmented and went off the Mirapex. Several months later I started it again 2 tabs of 0.125 mg. Then after a few months I decided to stop it again even though I wasn't augmenting. But started it again after a couple of months, this time only taking 0.125 mg just one tab. I decided that I would never take more than just one. Plus I could never get my symptoms totally under control without it. Also I don't consume any aspartame (diet drinks and food), no caffeine, very little sugar, and very little white flour products. I found that the aspartame really made my WED/ PLMD worse. That was just a recent discovery. During my worse period, when I was augmenting and they had me on multiple drugs, I found that my memory was getting really bad. Also I wasn't getting much sleep. I believe that between the drugs and little sleep, that affected my memory. I was fired from my job. I applied for disability and got it. I was very surprised. I also had a very good sleep doctor who backs me up. Now I take 2 5mg tabs of methadone and the one Mirapex. In about a month I'm going to try the neupro patch and try to stop the methadone.
Also, have you had your ferritin checked ? They have to run a blood test just for that. WED people need the ferritin to be 100. Most doctors think 15 is normal, but not for us. I also take an iron every day.
Good luck

[rthom]

On Oxycodone, I wake up feeling tired and have stayed in bed for 2 days. I get panicked because I worry that I will have no choice but to be like this mentally or have no pain relief and I work myself up into a place where I need to take Clonazepam to relax. Then I wonder if the mental stuff is my imagination and I question myself. It is this viscous cycle where I lose complete trust in myself. I call my physician and I think he may even be questioning me. He said that the Oxycodone is short acting and should be out my system by the next day. I swear I feel just like I did on the Methadone. The Dr told me at the time that it was me and not the drug, yet when I stopped taking it after the withdrawal symptoms, I felt completely normal again (minus the severe pain) and motivated to make the most out of my day.

I have taken it for years and feel the exact same way. If I get off I feel much better but have to deal with the WED and other pain etc.
I found out after testing myself that a lot of the crappy feeling is aggravated by the acetaminophen that is used (anyone that takes like 12 Tylenol a day is bound to feel pretty crappy--don't you think?), in short I think your Dr is missing something when they are talking to you about the meds, it could be the base making you feel really bad too.

[ViewsAskew]

I posted....and lost it. Trying to do too many things at once. As Deb wrote - some people do get disability. You also may find that there are other medication combinations. It's hard to go through all of it, but there may be something that works.

Option 1) Lyrica, Horizant, and gabapentin. These often work really well for people who experience painful WED. Dr Buchfuhrer was saying he's had much more success with Horizant than with gabapentin. So, even if you tried one or the other, don't give up until you've tried several. They CAN make you tired, but for most people, this dissipates in a few weeks.

Option 2) Do NOT take ropinerole or pramipexole regularly, but you can take it every other day. Or even take it two days in a row, then one day of an opioid. I did this for a few years. It prevents the worst side effects for both of the types of drugs. We don't know what the long term effects are - just that there might be some. We do know that we can't regularly take a dopaminergic after augmenting because we'll likely augment again. Does it change our brain chemistry? Maybe. But, do you have an option? Many of us take what we do because we have to.

Option 3) Try some tramadol during the day and evening instead of the higher potency opioids. It makes most people who take it feel pretty good - it is mildly energizing in many cases and doesn't cause that same tired feeling.

For what it's worth, many of us have reactions that are different than expected. More than once I've had a doctor question me or even blatantly say that I can't be feeling how I'm feeling....not sure how that works!

[badnights]

karalea
I don't usually say tacky things like this, but I hear a lot of fear in your post. I just want to emphasize that this state you're in is NOT permanent. Nothing is ever so bad or so good that it doesn't change. In your case, it can clearly get better. You haven't tried all the meds possible, so don't give up now, keep trying with the belief that you will find something that allows you to be you, as much as possible, and still deals with the WED as much as possible.

I'm not saying we can become all perfect again, I've certainly had to lower my standards, but don't settle for anything less than the best you can find! This determination will take you past doctors who don't understand, though it's a crying shame there are so many of those around.

You didn't list all the medications you had tried for WED in the past, but I would guess there are more to try. On top of that, there are infinite ways of combining those medications - either taking some of each every day, or taking different ones on alternate days or some other pattern. There is going to be something that gives you your life back, you just have to find it, which means you have to partner with one or more doctors, form some kind of relationship whereby you can try different meds or combinations of meds til you find something that works.

Do NOT go back to the DAs for a daily solution. And as mentioned, DO get your ferritin tested. Consider getting intravenous iron.

[karalea]

Thanks very much Views Askew and Beth; you both gave me some very good suggestions. Beth, you were absolutely right about the fear. I was on my second day of Oxymorphone which put me in the most horrible depressive state I have ever been in. After that drug and Methadone I really can empathize with people that experience clinical depression not provoked by meds. I felt lethargic, dead, yet it seemed that everything thought in the universe that can bring a person pain accumulated and hit me in one day. I thought about loved ones dying, bad relationships, things I have regretted in my life. It felt like my whole world was coming to an end and there was no hope in sight. YES! I was scared to death! My MD had me try both Dilaudid and Gabapentin. This morning I woke up and was a little tired but the old me was back..yeah!!!! I had motivation to do things and thought about happy things again etc. I will never take my mental health for granted again!

[ViewsAskew]

Thanks very much Views Askew and Beth; you both gave me some very good suggestions. Beth, you were absolutely right about the fear. I was on my second day of Oxymorphone which put me in the most horrible depressive state I have ever been in. After that drug and Methadone I really can empathize with people that experience clinical depression not provoked by meds. I felt lethargic, dead, yet it seemed that everything thought in the universe that can bring a person pain accumulated and hit me in one day. I thought about loved ones dying, bad relationships, things I have regretted in my life. It felt like my whole world was coming to an end and there was no hope in sight. YES! I was scared to death! My MD had me try both Dilaudid and Gabapentin. This morning I woke up and was a little tired but the old me was back..yeah!!!! I had motivation to do things and thought about happy things again etc. I will never take my mental health for granted again!

I've had this happen with more than one medication...it's truly an awful feeling, isn't it!!!! Prampexole is one that causes this for me. I was taking it every other day to prevent augmentation issues. After months of feeling suicidal one day and like "me" the next, I got to the point I just couldn't put one more in my mouth. I still don't have a great treatment plan, but darned if I want to feel like that even if the symptoms are gone!

[karalea]

View Askew, months of that I think would have provoked suicide in me! I am so glad for you that you stopped taking that drug. I don't know what is worse the severe pain from the RLS or that state of mind. What is the worst about it, at least for me is that I felt so disconnected from life. When I tried to call a friend to talk through it, there was no way to do it. You feel like your the only one and that no one could understand or has been through it. I didn't even know how to describe what was going on with me because there was nothing tangibly wrong. I didn't know if I was going crazy or not because the Dr kept saying that the drug was out of my body and that I should not be having any effects from it. That made it even worse because that meant to me that the problem was me and not the med. The Dr today admitted that some people get into emotional states from some opiates but not others. I think maybe he was a bit impatient and wanted the other one to work. I am so glad that I stuck to my guns because I was almost ready to give in and say OK, I'll take the Oxycodone. I am always worried about being too much trouble. This type of tx regime requires a lot of patience on the part of the physician and the patient for sure. In this fast paced life, it seems that many people are running quite low on patience!

[ViewsAskew]

Funny story....,

I had emergency surgery about 15 years ago and almost died The surgery was extensive and I had a huge would across my belly - I couldn't move much for a few days. They initially gave me a morphine drip. On the third day, the removed the drip and gave me hydrocodone. I told the nurse that I couldn't take it, that it made me ill. She shrugged and walked away. I called later for pain meds and a different nurse said it said on my chart that didn't want them. I explained that I couldn't tolerate them. I asked for something else. It was late at night - maybe 12 PM - and she said there was no doctor to write it. I was still pretty sore and out of it, so I didn't have the ability to argue or reason that there MUST have been a doctor on call! About 5 AM, I was still up and in so much pain that I called the nurse and said I'd take them anyway. I'd only had a reaction once - right before the surgery when I was in a lot of pain. So, I thought maybe it was because I was so sick that I reacted. And, I honestly didn't realize I had an option - to MAKE that nurse get me something else.

About twenty minutes after I took it, I projectile vomited ALL over my bed. I called the nurse (still the same one who wouldn't get a doctor to write a new script) and she was FURIOUS with me, lol. She asked me why I couldn't have used the basin (if you've ever been allergic to a medication, you know that you don't get much notice). She had to get another nurse to help her get me out of the bed while they stripped it and replaced the bedding.

Guess she had no patience . And, guess she thought I was being overly dramatic....I wasn't . We usually know our bodies very well. Too bad doctors and healthcare workers second guess us so often.

[Chipmunk]

We usually know our bodies very well. Too bad doctors and healthcare workers second guess us so often.

If I had a dollar for every doctor or nurse to whom I could say, "I told you so!". When I was 15 I had spinal fusion surgery where they take a rib and use the bone from it to replace the cartilage in between your vertebrae. Then the rib grows back (weird, huh?). Well about three weeks post-surgery I turned over on my stomach and - pop! - broke the rib. When I got to the ER I told them I broke the rib but they thought I had popped something loose in my vertebra so they ignored me and looked all over my spine.

The first thing I told them when I arrived was that I couldn't tolerate opiates very well so start with a small dose. They must have seen how much pain I was in (I could barely breathe, never mind move) and I remember them giving me an injection of something which I assume was morphine. About one minute later I start projectile vomiting (super fun with a broken rib, I might add) and they're like, "wow, you really ARE sensitive to opiates!" ...Seriously?

Then when I went back to my 6 week appointment, my doctor said, "you know, I think what you must have done is broken your new rib". Of course, being 15, I was like, "yeah, I told you that 3 weeks ago but you didn't listen to me."

Doctors who really, truly listen to you are worth their weight in gold.

[jakesmom]

I can so relate to doctors who don't listen and the beauty in finding one who does. I am so sorry for the pain and suffering you are forced to endure, but the moderators here are the best resources on the web. If they haven't lived it, or taken it, or know about it, they can find someone who has, is or does. This site has been a Godsend for me and I hope you find everything you need also.

I can relate to compulsive eating and spending and a miriad of other issues caused by DA's and having doctors who just thought I needed more willpower.

Keep asking questions. You will be suprised at how many responses you get.