New member going through treatment options

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AutomationAir
Posts: 6
Joined: Fri Oct 16, 2020 5:11 pm

New member going through treatment options

Post by AutomationAir »

Hi everyone! I’m 35 and have been suffering from RLS for as long as I remember, and I’m currently trying to get off so many different medications and narrow down what will work.

I received this lovely gift from my mother, but I didn’t know what it was or that we both had it until my late teens, when I started to hear about it a little more in the media. For a long time, I lived with it, and the lack of sleep, along with depression and anxiety. Around 8 or so years ago I finally decided to get help with my depression, which I didn’t realize might be linked to my RLS. At the same time, I mentioned to my doctor that I had trouble sleeping, so I was put on Cymbalta 60mg and Trazodone 75mg. My mood improved and I didn’t have RLS symptoms at night so I was able to fall asleep faster, but I still wake up semi-frequently during the night and feel groggy during the day.

Late last year I talked to my doc about my depression creeping back in as well as focus and concentration issues, and she decided to add Adderall in to help with my focus. I was ok but not seeing much improvement so my dose was upped to 20mg, but that seemed to increase my daytime sleepiness. Around the same time, my mother started taking Requip and was having some success with her RLS, and I wanted to cut out some of the serotonin from my meds, so I asked about switching from Trazodone to Requip to see if it helped my sleep.

I stopped the Trazodone and started 0.25mg Requip 10 days ago, and it’s not been going well. At first I had severe nausea and dizziness, which has subsided, but after taking it, I get pretty bad restless legs - a bit more twitchy and nauseated than I did if I skipped Trazodone previously.

My thought is the Cymbalta isn’t playing nice with the Requip. I’ve been going through my GP, but I did convince her to set me up with a neurologist. My appointment is late December, but in the meantime, I’m taking a lower Trazodone dose combined with the Requip, which lets me sleep at least. I really don’t look forward to tapering off Cymbalta, since I’ve heard it’s awful to quit, but it’s about time I start getting my RLS treated properly.

As an aside, I had my iron checked earlier this week as well. Ferritin is at 106, Iron saturation is at 35%, Transferrin is 225. Wondering if an infusion would be beneficial and is worth asking the neurologist about.

Thanks for reading and I look forward to sharing knowledge here!

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

Re: New member going through treatment options

Post by Rustsmith »

Welcome to the discussion board Air.

If not for your mother's RLS, I would have suggested that your RLS was due to the Cymbalta. Anti-depressants are notorious for causing RLS-like symptoms. They also are frequently triggers for RLS (only Benadryl is worse). There is a good chance that while you were on Trazadone and Cymbalta, that the Trazadone was helping to cover the symptoms.

As for your reaction to Requip, nausea and dizziness are not unusual side effects for the first few days and similar to your experience, they tend to disappear quickly. However, Requip should not be making your RLS worse. Your 0.25mg dose is fairly low, so is there a chance that what you are experiencing is simply the Cymbalta triggering your RLS and that without Trazadone to cover and a low dose of Requip, that you are simply experiencing breakthrough?

As for an infusion, your ferritin level of 106 is just over the published guidelines. The experts are all willing to ignore this value, but your new neurologist may not be experienced enough to be familiar with this (much less the idea of an infusion, which is very new to the arsenal of RLS treatment options).

As for stopping Cymbalta, getting off of an anti-depressant is not easy and if not done correctly can lead to a PTSD-like condition (I know this from personal experience). If your GP is not familiar with how to do this, you might want to ask to be referred to a psychiatrist to help you with this.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member going through treatment options

Post by badnights »

Hi and welcome!
I agree with what Steve said.
I'll also suggest that you read up on (and keep your mother informed about) augmentation, which is a side effect of the dopamine-type meds like Requip. It consists of a worsening of the disease over time, and is almost inevitable, given enough time. Most doctors don't know about augmentation. So, sadly, the medications are still prescribed as first-choice treatments, and are still raised instead of being stopped when augmentation occurs. MEdication-induced augmentation is mistaken for natural disease progression.

You could avoid the possibility of augmentation by switching to Horizant (gabapentin encarbil), also FDA-approved for WED/RLS. With a history of depression you would have to watch that you didn;t start feeling severe mood changes, because that is a side effect; but me - I've had both suicidal depression and augmentation as side effects of medications, and I recently had to choose between something that put me at risk of suicidal depression and something that put me at risk of augmentation, and I chose the depression risk. Augmentation is just awful, no way to described the horror.

Treating with iron, though, might be the best course for both of you. It would reduce and perhaps eliminate the need for medication, & reduce the likliehood of augmenting on Requip. If you like medicalese, there is a link to a paper in my signature link, the 2018 consensus guidelines for treating RLS with iron. Definitely discuss it with your neuro. She should have checked your iron and ferritin status before putting you on Sifrol.
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.

AutomationAir
Posts: 6
Joined: Fri Oct 16, 2020 5:11 pm

Re: New member going through treatment options

Post by AutomationAir »

Rustsmith wrote:
Sat Oct 17, 2020 12:31 am
Welcome to the discussion board Air.

If not for your mother's RLS, I would have suggested that your RLS was due to the Cymbalta. Anti-depressants are notorious for causing RLS-like symptoms. They also are frequently triggers for RLS (only Benadryl is worse). There is a good chance that while you were on Trazadone and Cymbalta, that the Trazadone was helping to cover the symptoms.

As for your reaction to Requip, nausea and dizziness are not unusual side effects for the first few days and similar to your experience, they tend to disappear quickly. However, Requip should not be making your RLS worse. Your 0.25mg dose is fairly low, so is there a chance that what you are experiencing is simply the Cymbalta triggering your RLS and that without Trazadone to cover and a low dose of Requip, that you are simply experiencing breakthrough?

As for an infusion, your ferritin level of 106 is just over the published guidelines. The experts are all willing to ignore this value, but your new neurologist may not be experienced enough to be familiar with this (much less the idea of an infusion, which is very new to the arsenal of RLS treatment options).

As for stopping Cymbalta, getting off of an anti-depressant is not easy and if not done correctly can lead to a PTSD-like condition (I know this from personal experience). If your GP is not familiar with how to do this, you might want to ask to be referred to a psychiatrist to help you with this.
Thanks for your reply! Unfortunately, my RLS predates the Cymbalta by a number of years (RLS started very young, Cymbalta use didn't start until my late 20s). I'm well aware of the Benadryl issues, but when I started Cymbalta, I was unaware that antidepressants were a common trigger. Since I started the Trazodone so close together with it, you are probably right that the Trazodone is masking it.

I was also kind of thinking that the dose of Requip just isn't high enough to offset the Cymbalta + my normal RLS. I did talk to my GP again and until I am able to see the neurologist, I'm holding with taking 50mg of Trazodone with the 0.25mg Requip at night, since the Trazodone does help me sleep and negates any symptoms I had with the Requip.

I do think I'll broach the subject of an infusion and see what the neurologist says. I looked up who I was referred to, and he's been a neurologist for over 20 years, but I can't find much information on how experienced he is with RLS.

My roommate went through the Cymbalta discontinuation thing a number of years ago, so I know how awful it can be. I don't look forward to it, but I am willing to try if it means I can potentially get my daytime energy back.

AutomationAir
Posts: 6
Joined: Fri Oct 16, 2020 5:11 pm

Re: New member going through treatment options

Post by AutomationAir »

badnights wrote:
Tue Oct 20, 2020 5:03 am
Hi and welcome!
I agree with what Steve said.
I'll also suggest that you read up on (and keep your mother informed about) augmentation, which is a side effect of the dopamine-type meds like Requip. It consists of a worsening of the disease over time, and is almost inevitable, given enough time. Most doctors don't know about augmentation. So, sadly, the medications are still prescribed as first-choice treatments, and are still raised instead of being stopped when augmentation occurs. MEdication-induced augmentation is mistaken for natural disease progression.

You could avoid the possibility of augmentation by switching to Horizant (gabapentin encarbil), also FDA-approved for WED/RLS. With a history of depression you would have to watch that you didn;t start feeling severe mood changes, because that is a side effect; but me - I've had both suicidal depression and augmentation as side effects of medications, and I recently had to choose between something that put me at risk of suicidal depression and something that put me at risk of augmentation, and I chose the depression risk. Augmentation is just awful, no way to described the horror.

Treating with iron, though, might be the best course for both of you. It would reduce and perhaps eliminate the need for medication, & reduce the likliehood of augmenting on Requip. If you like medicalese, there is a link to a paper in my signature link, the 2018 consensus guidelines for treating RLS with iron. Definitely discuss it with your neuro. She should have checked your iron and ferritin status before putting you on Sifrol.
Thank you! I read up a little on augmentation just before joining this forum, and it does concern me a bit. I'll research Horizant a bit more, but it sounds like something I'd be willing to try, given how bad augmentation sounds.But iron sounds like the best course to start with. I'll definitely talk about it with my neurologist (I haven't seen him yet; so far, everything has been through my primary).

Thanks again!

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member going through treatment options

Post by badnights »

Good luck! With this disease, we've found it's best if the patient arms herself/himself with information, learns as much as possible about the disease and treatments, for two reasons: it's complex to treat, with no one-size-fits-all approach; and almost all doctors are following old guidelines that put patients on dopamine agonist medications now known to cause a much greater problem than the disease left alone. So - learn as much as you can.

A good place to start is the Topic in Just Joined forum called "A good place to start". Also, the Foundation has a number of very useful brochures; I recommend if you only pick one that you pick the Medical Bulletin for Healthcare Providers. (Don't be shy to share it with your doctor - even your neurologist). And if you have a bit more money to invest in your health, there is a little blue book (first edition was green - you want 2nd edition, which is blue) called Clinical Management of Restless Legs Syndrome.

BTW where I said "With a history of depression you would have to watch that you didn;t start feeling severe mood changes, because that is a side effect" I should have said ".. that is a POSSIBLE side effect". Sorry about that!
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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