New member and need help with DAWS

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bbbdco
Posts: 3
Joined: Sun Oct 11, 2020 3:13 am

New member and need help with DAWS

Post by bbbdco »

I just joined and am a 68 year old male. I have suffered from RLS for over 25 years. I've been on pramipexole for about 12 years. I had to slowly increase my dose to cover my RLS. This summer I had gone up to 3 mg daily in divided dose, and was not getting relief. I was having RLS nightly and it also affected my arms and torso during the day. I was obviously in Augmentation. My local doctor did everything they could do, including iron infusions. Nothing helped. I decided to visit the Mayo Clinic RLS Sleep department the end of July. They confirmed that I am in augmentation. They put me on a 6 week tapering dose off of pramipexole, and concurrently placed me on an increasing dose of Oxycontin. I did fairly well for 4 weeks. About week 6, I began to have breakthrough of my RLS at night. I qult my last dose of pramipexole on September 13. In the days that followed, I began to develop all of the DAWS symptoms: severe sweating, loss of appetite, severe depression, crying, yawning, nausea, RLS. I finally ended up in the ER with suicidal ideation 2 weeks ago. At the time, they could not figure out what was going on. The Mayo Sleep neurologist thinks I am dealing with DAWS and said this will pass. But I am so miserable, I no longer want to live. I don't think they understand how miserable I am. I have lost all interest in life. I have lost over 25 pounds in 4 weeks. I have never dealt with depression like this before, and simply cannot go on living this way. I think I am one of those rare individuals, who had been on high doses of pramipexole for many years, and that perhaps I was simply tapered too fast. I will be having a Zoom visit with my Mayo Sleep neurologist tomorrow. I think I need to be restarted on pramipexole (or some other DA drug), until I feel better, and then do an extremely long taper of perhaps 6 months or longer to see if that works. I have researched the internet, and this is the only thing that makes sense to me. I am desperate, and wondered if anyone can give me some input. I'm beginning to worry that the pramipexole (or DAWS) is damaging my brain permanently....and I don't know what to do. I'm crying as I write this, and am simply looking forward to some relief....or I may go off the "deep end." Please help me. Dan

ViewsAskew
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Location: Los Angeles

Re: New member and need help with DAWS

Post by ViewsAskew »

Dan, I have no knowledge that can help - I haven't experienced DAWS. I just wanted to say that I am here and that I hear you. Please let us know what the neuro says. Also, consider contacting Dr. Mark Buchfuhrer. His email is somno@verizon.net. He is a well-known RLS doc - and not a neuro - but he is known to respond to people within 24 hours and often has helpful information.

Many of us here have had depression - mine doesn't compare to what you are feeling, I imagine, but I think some of our other members have had medication induced depression that sounds similar to what you are experiencing. I hope they are around and can help in some way.

Please accept a virtual hug from me.
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.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New member and need help with DAWS

Post by Rustsmith »

Dan, I experienced severe depression as a result of taking methadone. It took me a couple of months to get to the point of suicidal ideation and the other aspects of depression that you describe, but in my case we eventually figured out that it was the methadone. That is unfortunate because methadone does an excellent job on my RLS. We fixed the problem by switching to Tramadol ER. Tramadol is not only a weak opioid, but it also has anti-depressant properties with chemistry that is very similar to Effexor. I hope that you see this prior to your appointment, so that you can suggest the option. But I have found that most doctors (and even psychiatrists) are not familiar with this property of tramadol because it is not typically used to treat depression.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member and need help with DAWS

Post by badnights »

Hey Dan - sorry I didn;'t see this for so long. Are you OK?

You're absolutely right :
Dan wrote:I think I need to be restarted on pramipexole (or some other DA drug), until I feel better, and then do an extremely long taper of perhaps 6 months or longer to see if that works. I have researched the internet, and this is the only thing that makes sense to me. I am desperate, and wondered if anyone can give me some input. I'm beginning to worry that the pramipexole (or DAWS) is damaging my brain permanently....and I don't know what to do.
You actually do know what to do - what you suggest in the first sentence is more than sensible. I just attended the 2020 RLS Virtual Summit and listened to many WED/RLS experts on various topics. One thing that stuck in my mind was that some dopamine agonist withdrawals should be done very gradually, taking as long as a year. This was a recommendation for dealing with augmented WED/RLS - that the patient be titrated up to a decent dose of the substitute med while still taking the DA, then begin to reduce the DA over a span of12 months. So you're suggesting basically the same thing for yourself, and it certainly makes sense to me even without having heard that at the Summit.

The pramipexole might have caused some sort of damage to your dopamine receptor system (currently manifesting itself as augmentation, and perhaps DAWS). Whether this is permanent is doubtful; long-term, perhaps. What can you do about it? Your plan. Connect with your doctor ASAP and discuss it - he will probably recommend restarting pramipexole at the lowest dose you can get away with; and you follow that long, slow taper you instinctively know is needed, 8-12 months.

Finally, feed yourself well: good fats, very low amounts of easily digested carbs (sugars and starches), lots of vegetables of different kinds, no hyper-processed foods. That will give your body the nutrients it needs to repair damaged systems.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

sleepdancer2
Posts: 215
Joined: Sun Jun 29, 2014 7:46 am

Re: New member and need help with DAWS

Post by sleepdancer2 »

Hi. Haven't been on the board in a while, just saw your post. Not familiar with what all DAWS entails, just know if it's worse than the period of going of a dopamine agonist after augmentation, my heart goes out to you. One time, if I remember correctly, I was on about the same dose as you and quit abruptly. Not my smartest move, as I was badly affected. I did end up going back on the med then weaning off. During this awful time I used a TENS unit on my lower back(buttocks) every night before sleep and it took the edge off my misery. Over time and with consistent use the TENS became the only treatment I needed for my legs. Also used it during the day if I my legs were acting up. Started that in 2010 and just realized recently it's been a few months since I've needed to get out the TENS. All I do these days is make sure I get the iron, magnesium, and Vitamin D I need and only rarely use the TENS. I do hope you have found a good doctor to help you work through all this. I only tell you all this to make sure your know this misery isn't likely to be forever. Best wishes going forward.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

bbbdco
Posts: 3
Joined: Sun Oct 11, 2020 3:13 am

Re: New member and need help with DAWS

Post by bbbdco »

I haven't been on the forums since last October. The last 9 months have been a roller coaster, and I am in desperate need of help. I would first suggest reading my letter on top. After that letter, my doctor put me back on a low dose of Pramipexole (0.125mg TID) All my depression and DAWS symptoms went away.....for about 4 weeks. Then the depression slowly returned. By the end of January, I was suicidal, and admitted to a mental hospital.They upped the Pramipexole to 0.25mg TID. Again, I felt better for a while. Then the psychologists added Wellbutrin XL 300 and Prozac 40mg to my daily regimen. I felt a little better for a while, but again, the last 4 weeks I have fallen back into severe depression/DAWS. The doctors don't know what to do. I cannot continue to live with the severe DAWS symptoms. I don't want to die, but this has become unbearable. Are there any doctors that work in this area of DAWS. I'd be willing to fly anywhere. I am convinced that the Pramipexole has permanently messed up my dopamine system. And after 10 months, nothing has ultimately improved. I wonder if I need to go back up to a higher dose of pramipexole, and then begin a slow taper again. Anyway, I hope someone reads this and has something to offer.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New member and need help with DAWS

Post by Rustsmith »

The only suggestion that comes to my mind is to suggest that you call Dr. Mark Buchfuhrer's office in Downey, CA (LA area). A large part of Dr B's practice has to do with treating patients who are severely augmented. I don't know how much experience he has with DAWS, but if he doesn't have that experience, then he will know who does.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

bbbdco
Posts: 3
Joined: Sun Oct 11, 2020 3:13 am

Re: New member and need help with DAWS

Post by bbbdco »

I have contacted him, both last fall and yesterday. Both times he responded immediately. He has not given me much hope. In fact I will post his letter here:
As I told you earlier, DAWS is a very poorly understood condition. However, from my experience (which is likely as much as any other RLS specialist but perhaps less than some neurologists who treat a lot of PD), I suspect that the withdrawal from Mirapex triggered an underlying depression problem (which may have needed a chemical trigger like DAWS). Treating the DAWS may temporarily improve the depression but once triggered, the depression might have a life of its own.

Seeing a psychiatrist might be helpful even though most all the other antidepressant medications tend to worsen RLS. One suggestion that could be helpful and often does not worsen RLS is Abilify.

There may be some experts in treating DAWS but they might not have a better answer.

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

Re: New member and need help with DAWS

Post by ViewsAskew »

bbbdco wrote:
Sat Jun 12, 2021 12:12 pm
I have contacted him, both last fall and yesterday. Both times he responded immediately. He has not given me much hope. In fact I will post his letter here:
As I told you earlier, DAWS is a very poorly understood condition. However, from my experience (which is likely as much as any other RLS specialist but perhaps less than some neurologists who treat a lot of PD), I suspect that the withdrawal from Mirapex triggered an underlying depression problem (which may have needed a chemical trigger like DAWS). Treating the DAWS may temporarily improve the depression but once triggered, the depression might have a life of its own.

Seeing a psychiatrist might be helpful even though most all the other antidepressant medications tend to worsen RLS. One suggestion that could be helpful and often does not worsen RLS is Abilify.

There may be some experts in treating DAWS but they might not have a better answer.
He is so awesome in how quickly he responds...but certainly not much hope in that answer, is there.
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.

badnights
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Posts: 5975
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member and need help with DAWS

Post by badnights »

I disagree with the assessment that Dr B did not offer much hope. He said the depression might be a life-long condition, not the DAWS. Depression outside of DAWS is treatable.

So let's aim for that. Let's get rid of the DAWS then treat whatever depression remains.

Last October you felt that the answer had to be re-starting pramipexole and then tapering over 6 months or more. I agreed with you, and encouraged you to try a year-long taper and to eat well.

Meanwhile, you have gone back on pramipexole, but the doctors do not know what to do, so it's time to go back to your idea of the long slow taper. Remember, you got the idea from all your research into DAWS. It is the exact thing that some specialists are recommending for augmented patients to avoid DAWS. You repeated it in your last post.
And after 10 months, nothing has ultimately improved. I wonder if I need to go back up to a higher dose of pramipexole, and then begin a slow taper again.
It's time to do it.

Once thing I know, there is never no hope. Life is good, and it's too early for you to check out. You knew what you had to do back in October. Please try it!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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