Coping with Augmented RLS and Bipolor

[David Markle]

I joined this discussion board well over a year ago but I was too sleep deprived and miserable to write.

I was being treated for RLS for over 10 years with a modest dose of Mirapex that worked wonders for all that time. During those years, I was also being treated for a severe case of bipolar II. Then, over a year ago, the RLS broke through and went out of control and into augmentation. I went to several different Neurologists here in Austin, all of whom would just prescribe higher and higher doses of dopamine agonists. After several months of agony and sleep deprivation, my sister found the RLS Foundation. She called them and told them what was going on and they said that there was only one or two doctors in Texas that would be qualified to help me including Dr. Ondo in Houston.

Dr. Ondo was booked up for several months so in the mean time I read posts on this discussion board and figured out that I had augmentation. I read about the dangers and problems from high doses of dopamine agonists but by that time I was already taking four mg of ropinorole six times a day. I had been struggling for years with bipolar and the symptoms became unbearable together with the RLS symptoms. The insomnia triggered by the RLS symptoms triggered bipolar manic episodes where I didn't care if I slept so it just became a vicious cycle. I spent most of my time thinking about ending my life. I would have ended my life but my 15 year old nephew had ended his life shortly before and I saw how that destroyed my sister's life so I couldn't do that to her.

Finally, I got in to see Dr. Ondo and he had me try several different things for a few months, none of which worked. Then he told me that he was ready to prescribe methadone but he wanted to try Nuepro skin patches first together with Gabapentin. I have been on the 6 mg patches now for over a year and am symptom free except about once every two or three weeks the symptoms breakthrough and I take 2 mg of Mirapex to get through the night.

I am writing now in the event anyone could use some insight in dealing with bipolar and RLS at the same time.

[badnights]

You have been through hell! I hate this disease, and I hate that doctors still turn to dopamine agonists as if they're the answer. I wish they could see all the agony like yours that it causes. Dr. Ondo, at least, is knowledgeable and won't steer you wrong.

But I'm happy you've finally found some peace. Thanks for sharing your story.

Have you continued to learn about augmentation? It is possible to augment on the rotigotine patch. You need a 2 mg of pramipexole for breakthrough, and that's higher than the maximum daily dose recommended for WED/RLS (by WED specialiasts; the FDA says it's safe to go higher, unfortunately), so I wonder if you are still augmented? It is some very hard to come off pramipexole/Mirapex when you're augmented and on such a high dose as you were on. If you were unable to have a washout period without any pramipexole at all before starting the patch, then you're probably still augmented. It might be beneficial to you to look more into augmentation and how different doctors recommend to deal with it.

Did Dr. Ondo test your iron? For many of us, an iron infusion will enable us to lower medications for a time.

You should be proud of yourself for having come through that long period of torture, for being able to sit down and type here today, for staying alive when everything was stacked against you. It is a monumental achievement.

[Polar Bear]

I am so sorry you did not initially find a doctor who knew how to treat this horrible condition. It is madness that you ended up taking such a high dose of ropinerole and scary that there are doctors prescribing in this fashion. To have come as far as you have is incredible.

Well done your sister for taking the steps that led you to Dr Ondo. So many of our members know the horrors of augmentation. I augmented and took nearly a year to wean myself off 5mg daily ropinerole which is nothing compared to what you were taking. You are to be applauded in your achievement.

It is wonderful that you are now well enough to be able to share with us what you went through. Your story may give hope to other sufferers who might feel their mountain is too high to climb.

I am so glad you eventually saw Dr Ondo.
Well done for finding the strength to keep soldiering on during the times when it must have seemed impossible.

[David Markle]

Beth,

Thank you for your interest in my story. It is kind of you to reply because I feel alone in my struggles and I can't talk to my sister about it because she is still overcome with grief after three years since her son took his own life. I am single and have no children so my support system is pretty weak.

To answer your questions, yes, I have continued to learn as much as I can about augmentation. I used to read every single post there was on this site several times. It gave me some hope to see that there were others who have managed it.

I did not have a washout period, so I understand that I am probably still augmented. However, the symptoms are under control so I don't dare monkey with it . I know that eventually the patch will quit working so I am depending on Dr. Ondo to help me deal with it when the time comes. Yes, Dr. Ondo checks my iron annually.

Beth, thank you for the notion that I should be proud of myself and that it was a monumental achievement. You made my cry.

Unfortunately, that period of time battling RLS symptoms triggered some unordinary features of my bipolar condition. One is called "bipolar with mixed mania" and the other is called "bipolar with ultra rapid cycling". I have been unable to find a psychiatrist that knows how to treat these conditiions. I did find one though that will just prescribe what I tell her to. I am just constantly changing my med cocktail. I can't include SSRI anti-depressants because they trigger RLS symptoms, The result has been that I am still struggling with out of control bipolar symptoms including insomnia which triggers mania. I don't really see any relief in sight of my condition. This is torture but at least I'm no longer having to manage RLS symptoms at the same time. Much of my problem in dealing with the depression episodes comes from my experience of losing 4 million dollars mostly cash and real estate that I blame my bipolar symptoms on. I often think of ending my life.

I would like to let the readers know that the pharmaceutical company that makes the Nuepro patches will provide them free of charge if your income is low enough.

Beth, I want to thank you again for your interest in my story. You and the other moderators are gifts from above to your readers. May God bless you!

Dave

[David Markle]

Betty,

Thank you for your interest in my story. I want to tell you like I told Beth that you are a blessing from God. You and the other moderators are towers of strength and an inspiration to us all!

Dave

[Rustsmith]

Dave, I had to way a day to respond because a couple of points that you made about your history hit a bit too close to home for me. You are in excellent hands with Dr Ondo. He was my RLS doctor until I moved away from Houston a few years ago. I was on the patch during most of my time with him and he probably would have switched me to methadone if not for his job change to his current position followed by my pending move out of Houston.

But the reason why I had to wait a day was because your various psychiatric situations hit a bit too close to home for me. I am not bipolar, but have struggled with depression for much of my life. I recently went to the local hospital's ER because my RLS had been consistently giving me problems and I had not slept well for days and so was mildly depressed. The psyc tech at the ER decided on her own that I was suicidal even though I repeatedly told her that I was not. I even told her that I had been close to suicide due to medication side effects at one point so I knew what that was like and that I was not close to that level of depression. But she convinced the doctor to have me involuntarily committed for what started out as a 72 hr hold but the for-profit psych hospital the sent me to extended to 8 days (which I believe was solely to milk my insurance). I can only describe what happened as a nightmare, but cannot say much more of the specifics due to the potential for legal action.

I can offer these comments to you, some of which you probably already know:

1. Most of the anti-depressants available to treat depression can be RLS triggers. Wellbutrin is the one that is usually described as RLS friendly, but was highly unfriendly in my case. However, most of the RLS experts agree that when it comes to depression and other behavioral conditions, the first priority is to treat the mental condition and then do whatever is necessary to bring the RLS back under control. In my case, exercise in the form of running is the only anti-depressant available to me, so I am now under my RLS doctor's orders to run on a regular basis.
2. One of the potential side effects of methadone is that it can cause either depression or apathy. I developed apathy on methadone after about 2 yrs, but it took a while and wasn't something that just simply happened one day. I realized one day that I didn't care about much of anything other than my wife and that this feeling had been there for a number of months. I switched to Tramadol for over a year but am once again taking methadone. But now my wife and I will be careful to watch for gradual changes in my moods so that I can request another switch at the appropriate time.
3. Many, if not most, doctors are not aware of the fact that Tramadol is both an opioid that can be used to treat RLS and also has the chemical characteristics of an SNRI anti-depressant. The doctors know that it is a mild opioid, but I only encountered one doctor (including everyone at the psyc hospital whom I would have thought would know better) who knew anything about the SNRI properties. Neither the opioid nor the SNRI properties are all that strong, but it might be something to think about. Also,tramadol is the only non-DA that can cause augmentation, but this appears to be a rare occurrence. Also, for men, Tramadol is used to treat pre-mature ejaculation, so a slow loss of sexual function can also be a side effect that carries its own set of mental health complications.

[ViewsAskew]

Dave - a close relative of mine is bipolar and has RLS. Recently they posted (at 4 AM) on Facebook about how this was the end, this was a cry for help, and they wanted to die. I was likely one of their few friends/relatives who saw it - because I was up thanks to RLS.

We talked and they are ok - OK as one can be fighting this stuff. I talked to their mom - she said that she knew by the time the kids as 5 or 6 that something was up, but it wasn't until the first bipolar event at 17 that it was apparent exactly what. Mom feels so helpless. And worries that one day she will find her child has had enough and has left the earthly world.

We don't talk about this enough. We don't have enough people to help. I can only hope that we can hold the space here and allow whatever grace that can happen to happen.

[Bridgercan]

Hello David—first off, thank you for sharing; you never know, just by sharing your experiences, how you can inspire another tortured soul to hang in there, to stay with us in this world, and get to a better place. Your long hard journey resonates very much with me and parallels what I’ve gone through with bipolar II, suicide attempts, RLS, and augmentation.

I joined this discussion board well over a year ago but I was too sleep deprived and miserable to write.

I can so relate!!

I was being treated for RLS for over 10 years with a modest dose of Mirapex that worked wonders for all that time. During those years, I was also being treated for a severe case of bipolar II. Then, over a year ago, the RLS broke through and went out of control and into augmentation. I went to several different Neurologists here in Austin, all of whom would just prescribe higher and higher doses of dopamine agonists.

It pains me to read this as my experience was all too similar...words can’t begin to describe the misery...

I had been struggling for years with bipolar and the symptoms became unbearable together with the RLS symptoms. The insomnia triggered by the RLS symptoms triggered bipolar manic episodes where I didn't care if I slept so it just became a vicious cycle. I spent most of my time thinking about ending my life. I would have ended my life but my 15 year old nephew had ended his life shortly before and I saw how that destroyed my sister's life so I couldn't do that to her.

The one thing that stayed my hand was, after seeing how devastated my mother was after my attempts, I couldn’t bear what a successful suicide would have done to her. But it still didn’t stop the suicide ideation after weeks and months of BP II med-related and RLS insomnia...an especially vicious cycle, that one.

Finally, I got in to see Dr. Ondo and he had me try several different things for a few months, none of which worked. Then he told me that he was ready to prescribe methadone but he wanted to try Nuepro skin patches first together with Gabapentin. I have been on the 6 mg patches now for over a year and am symptom free except about once every two or three weeks the symptoms breakthrough and I take 2 mg of Mirapex to get through the night.

Sound like you’ve been able to get your symptoms under pretty good control—that’s a big accomplishment! May it stay that way! Again, thank you for sharing David—your post has helped me tonight as I sit here soaking in a magnesium salt bath after a bad fight with my spouse (it got resolved enough before bed). Nonetheless, bad emotional turburlence is another RLS trigger for me, but this too shall pass!

[David Markle]

Steve, I am so sorry to hear that you also struggle with depression and RLS at the same time. I have read hundreds of your posts, some several times over. I had a similar experience to yours with the psych hospital. I spent five days and nights in one while suffering a complete mental breakdown from losing all my money and my business. My wife had left me when the money was gone and my Dad died all in a span of two months. I will never forget how they would let schizophrenics roam the halls and the cafeteria screaming at the top of their lungs while hallucinating. They kept telling me that I couldn't leave until the new meds had a chance to work. After I raised enough hell, they said I was there voluntarily all along and dismissed me.

I also found SSRI anti-depressants triggered RLS symptoms. I had to switch from Lexapro to Wellbutrin. Problem is the Wellbutrin doesn't do anything for my depression. I take lamotrigine and Rexulti which are mood stabilizers. When I am in a depressed cycle I take Vyvance in the morning to keep me from sleeping all day. When I am in a manic cycle, I take trazadone for sleep. I am getting ready to try Latuda. I am constantly changing or adjusting meds to try and stay ahead of the mood swings.

I knew that running was theraputic for you but it didn't work for me. I do have some ideas on how to cope with extreme depression besides meds that have helped me immensely. They are as follows: (1)Doing mission work in poverty stricken areas. It is hard for me to feel sorry for myself while helping people that don't have enough to eat or have roofs over their heads. (2) Cognitive Behavioral Therapy (CBT). (3) Getting a puppy. (4) joining a Bible study group. (5) Starting a gratitude journal. I thank God for my afflictions because they keep me close to Him,

Steve, I am grateful to you for your work here on this discussion board.

Dave

[Rustsmith]

Dave, thanks for your kind comments.

While I was on the inside, I kept telling the staff that they were preventing me from providing care for my disabled wife and from helping others through this site and one other that I help with. I guess that when you work at a place like that, you become quite jaded and assume that anything that a patient says is either a total fabrication or is whatever they feel needs to be said to try to get out. The idea that a patient might be well educated, know as much or more about something than they do or even might be telling the truth seemed to be beyond their ability to comprehend. Fortunately, the other patients that I was housed with were sane and were most were struggling alcoholics trying to learn how to deal with their problem. I only experienced one incident with someone who went over the edge and we never saw her again.

[stjohnh]

...

I knew that running was theraputic for you but it didn't work for me. I do have some ideas on how to cope with extreme depression besides meds that have helped me immensely. They are as follows: (1)Doing mission work in poverty stricken areas. It is hard for me to feel sorry for myself while helping people that don't have enough to eat or have roofs over their heads. (2) Cognitive Behavioral Therapy (CBT). (3) Getting a puppy. (4) joining a Bible study group. (5) Starting a gratitude journal. I thank God for my afflictions because they keep me close to Him,

Steve, I am grateful to you for your work here on this discussion board.

Dave

Dave, I am so sorry for your troubles. I have severe RLS (currently under good control with periodic IV Iron infusions) and have minimal psychiatric issues. However I have found the same things (except haven't tried CBT) have helped me immensely. I regularly went to India on church sponsored medical mission trips, providing medical care and counseling to Dalits (previously called untouchables) until I had to stop due to severe RLS making the 20+ hour plane flights impossible. I got a dog 10 years ago, and now have two, they have helped me immensely. I am in several Bible study groups and run one myself. I don't have a gratitude journal, but thank the Lord many times daily for my innumerable blessings.

My various problems have indeed brought me closer to Him.

I'm glad you are here and hope we can help.

Your Brother in Christ,
Holland

[David Markle]

Ann, my heart aches for the 17 year old. At least they have a diagnosis so they can explore the myriad of activities and meds to survive it. They should consider that people react in different ways to different therapies for Bipolar and RLS and that treatment may change periodically for the rest of her life.

Your relatives are probably already doing this but I think it is important to understand whether they are dealing with any of the other subsets of bipolar such as mixed mania and rapid or ultra rapid cycling. It is also crucial for the afflicted to know as much about bipolar as their doctor. I have found the best place to learn more about bipolar is online youtube videos by Dr. Tracey Marks. She has dozens of videos on bipolar and other mental illnesses.

I will be praying for your relative and please let me know if I could be of any service.

Ann, you are serving a great purpose here as a moderator. I admire your posts.

Dave

[David Markle]

Hello Holland, I am so pleased to communicate with another follower of Christ! Your response to my story is a blessing from above.

I have an idea for you since you can no longer travel abroad on mission trips. I can't go on the mission trips abroad because I can't afford to. My income is limited to Social Security Disability. I have a lot of exposure through two different volunteer groups that I belong to that feed the homeless that live under an interstate bridge here in Austin. I started asking some of the needy who did they know that didn't have enough to survive. The answers to my questions led me to occupants of an old run down RV park that was hidden from view. There I found about 60 tenants all living below the poverty line. I got in touch with the manager of the park and asked her which tenants were the worse off. From there I started just three weeks ago, my own miniature one man mission.

I started asking for donations from fellow church members and others for $200 donations. Response has been good and I have helped two families financially to avoid extreme peril. My men's Bible study group have joined me to do some much needed repairs to the living units most if which are not livable. Then I got a gift from above: the men in my Bible study learned that I couldn't afford the Nicaragua mission trip so they took up a collection and are paying my way! Isn't God great?

Holland, this discussion board is another way for you to serve God and you will surely be blessed for it!

Dave

[stjohnh]

...
I have an idea for you since you can no longer travel abroad on mission trips.... volunteer groups that I belong to that feed the homeless that live under an interstate bridge here in Austin....

Holland, this discussion board is another way for you to serve God and you will surely be blessed for it!

Dave

Thanks Dave, I serve in my local area now, God gives us plenty of opportunities. I lived in San Marcos (close to Austin) for 25 years before moving back to my childhood home and family in the San Francisco Bay area.

[ViewsAskew]

Dave - Thank you for the suggestions. I don't know details - I do know that there are subsets from my own research, but haven't asked my relatives too many probing questions - for now I act as someone who listens to the mom when she needs someone to talk to. I'll listen for an opening to bring up the videos.

I cannot speak for the other moderators - I know that people here helped me when I had hit a brick wall and didn't know how to get more than a few minutes sleep per night. The warm welcome I received, coupled with the knowledge that was provided changed my life dramatically. I pay it back and forward as I can.