Taking 8 meds just for RLS and related insomnia

[karalea]

Hello,
I need to vent. In April I learned from a new primary care physician that I started going to that the 60lb weight gain that I have experienced over the last few years was related to the increasing doses of Mirapex and Requip that I have taken for many years. The meds caused me to compulsively eat. I thought I had an eating disorder. Since being taken off the Mirapex and Requip, I have lost about 35lbs which I am thrilled about. The months since April have just been one big roller coaster as I have tried just about every opiate there is which all cause me to get severely depressed. The neurologist that I am going to, who, is very good and seems to be one of the only physicians that I have been to that knows how to treat RLS and the related pain ordered a sleep study. This revealed that I have serious central and obstructive sleep apnea. My oxygen sats dropped to the 70's and there was significant concern that I could die in my sleep from cardiac arrhythmia related to the low oxygen levels. I was taken off the dose of opiates that I was on and other meds were added to my regime. I am still taking 10mgs of Opana. I have tried to stop taking this but my symptoms return. In addition, I am on Amantadine, Clonidine patch, Ketamine, Oxybarbazepine, Nuvigil, Clonazepam and Melatonin just for this condition alone! In addition, I take Cozaar for blood pressure, Femara, Lexapro was changed to Deplin. I only needed 1 or 2 pills for this and now my bedside table is like a pharmacy. I am 52 years old and feel like I am 80. I feel like my whole life is revolving around this darn RLS. I have had a day where I guess I am feeling sorry for myself but also a bit scared. I keep wondering what all these meds are doing to me in terms of side effects. I feel kind panicked, like, what will happen if I can't get all these meds? How will I be able to keep them all straight and live a semblance of a normal life. I am feeling like this is the beginning of the end. I am just waiting for the next shoe to drop. I haven't even mentioned the expense of all these drugs. The Ketamine alone costs me $140.00 per month out of pocket. Is this it? Is this what my life will look like? I feel so discouraged. I was going to go to the gym but I am starting to feel like, why bother. I feel like a medication invalid. I have a 14 year old daughter who needs me. I don't have a job right now because I couldn't manage a job while being on medication trials. I was getting extremely tired at around 4-5pm so my Dr ordered the Nuvigil to keep me awake longer. I have to take pills to go to sleep, pills to stay awake, pills to not be in pain. How does a person who needs to take so many meds feel any degree of certaintly about life and health. Should I still bother to go to the gym? I feel like a completely different person since I have started to take so many pills. I don't know myself anymore. I can't tell if when I am feeling sad or depressed is because of medication or my discouragement about my RLS. There just has to be another way. For anyone who read through this whole thing, thank you.

[Chipmunk]

Do you take all of those in one 24-hour period?

I wrote a brief blurb about each of your medications below so I could keep them all straight. It seems as if your doctor just threw all of the possible treatments for RLS/WED at you at once. I'm shocked and horrified that s/he would do that. Don't get me wrong, I'm on quite a few meds myself, but IMO if you need more than two meds for the same condition, you could probably do without one of them, KWIM?

I'm particularly concerned about the Ketamine. That can be a very, very dangerous drug when taken with BOTH an opiate AND a benzo. And, for that matter, opiates and benzos shouldn't be mixed with each other, either.

What did your doctor tell you about why s/he wanted you on each of these?

***
Oxymorphone (Opana, Numorphan, Numorphone) or 14-Hydroxydihydromorphinone is a powerful semi-synthetic opioid analgesic first developed in Germany in 1914,[3] patented in the USA by Endo Pharmaceuticals in 1955[4] and introduced to the United States market in January 1959 and other countries around the same time. It (along with hydromorphone) was designed to have less incidence of side effects than morphine and heroin.
Amantadine is a weak antagonist of the NMDA type glutamate receptor, increases dopamine release, and blocks dopamine reuptake.
Clonidine - By fooling the brain into believing that catecholamine levels are higher than they really are, clonidine causes the brain to reduce its signals to the adrenal medulla, which in turn lowers catecholamine production and blood levels. The result is a lowered heart rate and blood pressure, with side effects of dry mouth and fatigue.
Ketamine may increase the effects of other sedatives, including but not limited to: benzodiazepines, barbiturates, opiates/opioids, anesthetics, and alcoholic beverages.
Oxcarbazepine (ox-kar-BAZ-ih-peen) is an anticonvulsant and mood-stabilizing drug, used primarily in the treatment of epilepsy. It is also used to treat anxiety and mood disorders, and benign motor tics. Oxcarbazepine is marketed as Trileptal by Novartis and available in some countries as a generic drug.
Nuvigil - promotes alertness.
Clonazepam is a benzodiazepine drug having anxiolytic, anticonvulsant, muscle relaxant, sedative, and hypnotic properties.
Melatonin - sleep hormone.

[ViewsAskew]

Karalea, I am not a doctor, so please take what I'm going to say in that light. And, before I say anything, let me give you a virtual hug. I hear the emotion in your post - you must be overwhelmed by all of this.

I wonder what would happen if you stopped ALL of these meds (carefully and under the doc's supervision) for about 3 weeks. it would be VERY hard. But, once it was over, you could start again. Of course, you'd have to be careful stopping the clonazepam and the ketamine. They can cause physical dependence that can mean you need to stop them slowly over time. But, if you stopped these slowly over time, and stop the rest as appropriate, you could test other drugs.

It really is a LOT of drugs to take. And, as Tracy has pointed out, you're on some STRONG medications!

I also am wondering about what else you've tried. When you augment severely, the opioids are often only used for a few weeks to help you STOP the augmentation. Then you try the most commonly used antiseizure drugs: gabapentin encarbil, pregabalin, or gabapentin. If these do not work, then you start trying some of the things you are taking.

Since you are taking oxcarbazepine - an antiseizure drug - I wonder why this instead of some of the others? And, I wonder how much? Have you tried taking more of this drug? if so, what happened? Have you tried any of the other drugs in this class?

[EeFall]

You are having very similar severe RLS problems and severe sleep apnea problems that I have had, your sleep apnea is actually worse. Having both complicates things. I have gone through hell as you are going through until after 13 years my sleep doctors ran out of ideas (and these are good sleep doctors). My sleep doctor had me contact Johns Hopkins in Baltimore, Maryland and talk to Dr Alan (who is retiring), and he had me see Dr. Earley who is a colleague of his. These two doctors are some of the best in the nation (probably the world) with regards to sleep problems. I live in Seattle and flew to Baltimore to see Dr. Earley a few months ago and he literally saved my life.

There is also a doctor in Los Angeles area, can't spell his name but all the mods here know him, goes by Dr. B. He is also on the same level as Dr. Earley. I don't know where you live but if I were you I would try to get a referral from a doctor to see one of them or to just contact their offices yourself. My doctor here also knew a good sleep doctor at their level at the Mayo Clinic in Chicago.

Dr. Earley got me off all my medications, especially the pramipexole, and restarted me on only methadone and Lyrica and I am doing better now than before the first time I augmented on Mirapex back in 2008.

If at all possible see one of these doctors who are at a higher plateau than just an average or good doctor, these guys are at the forefront of their professions, you need the very best doctors because you have, unfortunately, severe sleep problems. I couldn't afford to go see Dr. Earley, but looking back on it I couldn't have afforded not to go see him. The point I'm trying to make is to go see one of the best because you have one of the worse cases of sleep problems. If you can't see them, try to find a doctor on their level, maybe call their offices and see if they can recommend a doctor in your area (I don't know if they will do that but it wouldn't hurt to try).

It can get better, much better, I am living proof of that

ps
I gained 70 pounds from the meds, now I have lost 30 of them so far.

[Polar Bear]

karalea - I can't add anything to the previous posts which are very informative.
Off the top of my head - I personally feel that so much really strong medication there may be some serious interaction or doubling up going on.

Has your ferritin serum level been checked, you'd want it to be up near 100.
Don't let dr just say it is 'normal', he might consider 20 normal, but this is not the case for those of us suffering with WEd/RLS, so you will want to know what the exact reading is.

[karalea]

Thank you everyone for your replies. Let me expand a bit more. I started this whole mess with severe insomnia at about the age of 18. I could go 3 days with maybe 4 hours of sleep all the while being so exhausted I couldn't function. As a result my moods were all over the place. One could easily think that I had bipolar mood disorder. I think my insomnia was just part of this whole disorder. At about the age of 36 when I was pregnant I developed severe RLS. It was everynight with severe "electric shock" like pain. After I had my daughter, the pain remained consistent. I was on Permax initially which made me so tired I had to sleep within 30 minutes of taking the drug at about 8:30 or 9. A couple of years later, I had a friend that was on Mirapex for RLS. I started taking that and remained on it until this past April. Requip had been added over the past 2 years until I was on doses high enough for a Parkinson's patient. In April I was taken off of these 2 meds. Along the way, as the Mirapex stopped working I have tried almost everything; Gabapentin, Lyrica, Horizant, Neupro, Tramadol, Clonidine; everything that is used for RLS without success. I was lucky to find a very good pain Dr that went through all the various opiates with me; Methadone, MS Contin, Oxycodone, Oxymorphone, Opana LA, Dilaudid. Methadone and Oxycodone worked but made me so severely depressed I could not get out of bed. The rest did the same except not to the same level. They made me fatigued and as a result depressed and they basically took my personality away from me and any zest for life that I had. Looking back, now that I have had the sleep study, these drugs could have exacerbated my sleep apnea to a point where I was not getting any restorative sleep which might have been what was causing my fatigue and depression, not the drug. This is the first combination of meds in which I have been able to sleep well and feel somewhat normal until 5pm, at which time I rapidly go downhill and feel the need to go to bed for the night. That is why the Dr. ordered Nuvigil which keeps me awake. My Dr has been voted "Best Doctor" for a few years in a row by our community. He is very good. I am paying out the wazoo to see him because he does not accept insurance. I have used up almost all of my retirement money to take care of this problem. I have applied for disability but it will be 180 days before I find out anything, at which time my retirement money will be all gone and I will have had to find a job to keep my home. I am an RN, which scares me because you really need to function well since people's lives and or finances could be at stake depending on the type of job I take. I am finding myself to be very forgetful and I miss things I would not have normally missed. I have no doubt that it is because of all these meds. I don't have the money to go see anyone else. I do trust my Dr but I know this board of people has been dealing with this for a long time and I am writing in here to find out if anyone might be on a regime I have not heard of. Unfortunately Opiates are out of the question. My Dr wants to wean me off the Opana but I have not been able to do it so far. I guess I am out of luck and just need to deal with the whole thing. If anyone has any other suggestions, please keep them coming! Thank you so much.

[ViewsAskew]

It may be worth revisiting Horizant and those similar now that you're completely off dopaminergics. Another option that would be hard, but could be worth it, would be to stop all drugs for a time. A few weeks, say. That could reset your brain chemistry, allowing smaller doses to work.

I find that the only thing that works for me is one opioid and one dopamine agonist. Since I augment within a week using any dopaminergic (did the very first time I took one and still do now) and I develop tolerance to the opioids so have to increase my dose every 10 months or so, I alternate them every day. It's the only way we have been able to keep the dosages safe and prevent problems with augmentation.

[QyX]

I didn't read everything. This is just a quick reply to opioids and depression.

Opioids also made me depressive. After a while it turned out that I have an underlying depression and anxiety disorder. So we added an SSRi.

Since then I have no more trouble with depression caused by opioids.

[karalea]

Thank you Views Askew and QyX for the additional thoughts. I am so discouraged and fed up with all the different meds that I have tried especially because it has been within such a short time that I am situationaly depressed and would not even be able to tell if I had a chemically related depression. I cannot motivate myself to do anything. I have literally been hanging out in my room on my bed for almost 4 days. I am starting to lose hope and I want to cry or sleep, yet, I need to be looking for a job, getting exercise and striving to live for the sake of my daughter. Everyday it just gets harder and harder to do it, especially as all my retirement money begins to run out. I just cannot see much of a future for myself. I did read that a few people here have tried Subutex which is I guess similar to Methadone but it does not contain Narcan. I read a post on here about it but the thread was kind of old. Is anyone currently taking this? When I tried Methdaone, not only did it make me depressed but it made me sweat profusely. I wonder if the side effects would be the same with this drug. The other issue with it is that I would need to proclaim myself as an addict which I am not. At this point, who cares. I would rather be considered an addict and take 1 pill than 8 to get pain relief and be able to live some semblance of a normal life.

[aveerik]

Karalea I am taking suboxone with great results. It is subutex with the narcan in it. You definitely could not take anything with Narcan as it seems you already know. I would be careful going the drug addict route with being an RN. You could really limit future employment. Plus in my case not necessary. I feel for you and wish you luck. One thing I was thinking is there are many jobs for RN's at home, chart review for disability insurance, chart review for attorneys that specialize in medical malpractice, plus doing things for health insurance companies. Maybe something you could handle from home?

[Chipmunk]

I don't know what state you're in, but have you tried medical marijuana?

[debbluebird]

My story is similar to yours. I have WED and PLM along with severe sleep apnea. I'm an RN too. I was 60 when I had to stop working. They fired me. That was a big blow. I went from being a very good nurse to not remembering what I was doing. They never said I made any mistakes, but I couldn't remember if I had written an order, etc. I can remember concentrating so hard, writing down everything I could. It was horrible. Now, I don't think it could have been any other way for me.
I went through hell, just like you. I have been on disability for about 2 years now. It was the memory loss that got it for me. I've about decided that it was due to the meds and lack of sleep. Probably more the lack of sleep. They had me on so many meds at the time. I thought I was going crazy. It's a horrible process to get off of all of them. I found that the side affects from the Methadone went away after awhile. When I started on that I was when I was able to slowly eliminate the drugs. I also stopped caffeine and aspartame. That also made a big difference. Right now I'm only on Methadone 5 mg. 2 to 3 tabs. I also found that my memory only improved a little. Also your ferritin level is very important.
I truly feel for you, as I have been there. Maybe for you, you could take a leave while you go through the process of getting of the drugs. I also think my sleep apnea has improved since I'm taking less meds, getting some sleep and always wearing the mask. Good luck.

[karalea]

Thank you Aveerik, Chipmunk and debbluebird for your replies. Aveerik,how long have you been on Suboxone? Do you know whether that would be a problem with someone that has sleep apnea. My Dr says that it is an opiate so he is hesitant to put me on it. I thought it was not an opiate but worked on the same receptors. As far as the work at home job, I tried to work in a job that was a work at home job. First though, I had to prove myself in the office. I had a tyrant of a boss who looked over my shoulder throughout the day. They had a very complicated computer system which I had a hard time with because so much had to do with how quickly you could memorize. i constantly had to refer to the steps that I wrote down on paper. The company was all about the numbers and how fast a person could produce, even in the first 3 months. Needless to say, if I had to look at the steps often, I was not that fast. I used to stay until 7pm at night to get my work done. I ended up getting fired. debbluebird, our stories are so much the same! At that point I had gained 60 or 70 lbs and was developing hypertension, gastro reflux disease and needed to be away constantly for MD apts. After I got fired, I thought that I would take some time off to get my health squared away. I have lost 35 lbs. I had no idea what a nightmare I was in for in getting on some kind of consistent medication regime. I have applied for disability but I really don't want to be on it. Being a single mother, I have had just enough money to manage the day to day stuff to keep my house and take care of my daughter. Needless to say there is no money in the bank for my daughter's college, house repairs etc. I just live in a constant state of holding my breath and hoping nothing goes wrong. I am tired and just don't know how much longer I can do it. Tracy, I have not tried medical marijuana. Is that legal in all states? I live in NC. Does it work? Does it give you the munchies? Maybe I will suggest that to my Dr. When I was in high school I tried pot which made me so paranoid it gave me a panic attack. Does medical marijuana give you the same effects as the illicit kind? Thanks again everyone. I am so glad there is a place to vent about this. People in general just don't understand this mess!

[debbluebird]

I would much rather be working than being on disability. But I just don't have a choice. My memory just isn't good enough. Plus I have really bad osteoarthritis. I've had my knees replaced. Just had one hip done. Now I'm waiting to have the other hip done. I also had gained 55 pounds when I was on all of those meds. I think three of them made me gain. I've lost 50 pounds so far. What a difference since I'm off of those drugs.
We had to walk away from our house, two story 2300 sq ft. That nearly killed me. We moved to my husbands very small home town and were able to buy a very small house, 600 sq ft. via a contract. I totally understand where you are coming from. Hopefully your daughter will keep up her grades and be able to get scholarships.
It sounds like you are a survivor and you will get through this too.

[Polar Bear]

I am very moved by these posts and realise how fortunate I am that our home is paid out.
I am now retired, but no way could I now work under pressure and to a deadline like I used to.
I forget things, I get mixed up.... lack of sleep.....just what we are all dealing with.

I don't believe that a non sufferer could ever imagine just how this disease can have an effect that could cause a sufferer to lose their job, their home, mess up relationships.

Well done to those who are finding it possible to 'cut their cloth' accordingly, and good luck to everyone who is coping from day to day and doing their best to keep their head above water.