New to Discussion Board

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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bklyn62
Posts: 4
Joined: Fri May 08, 2020 3:08 pm

New to Discussion Board

Post by bklyn62 »

Well, my neurologist has me on Gabapentin in two divided doses in the evening, and the sleep doctor put me on an iron supplement, because my ferritin was low. I had to go off an SSRI because that's an issue too for RLS. I went off it and was doing well, I actually had some relief for awhile, until my psychiatrist put me BACK on a low dose of an SSRI...and now it's flaring up every evening and it's driving me crazy. I have a telehealth appointment with this doctor next week to get me off the SSRI and hopefully I can get back to some relief. In the meantime I also have clonazepam (very small dose) from my neurologist if I need it. Hopefully going off the SSRI will do the trick.

Whew, that was a mouthful!! LOL :D Thanks for asking!

I'd really love to know what has worked for anyone else who has found relief. I've had this for as long as I can remember, and sometimes it can go on for hours. The impact can be debilitating.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New to Discussion Board

Post by Rustsmith »

Anti-depressants are a well established trigger for RLS for most of us. The only exception is that sometimes Wellbutrin can be used without causing RLS problems. For many of the ADs, RLS is even listed is a side effect of the medication, so getting off of them will often also resolve the RLS problems.

However, the RLS experts also will say that it is important to treat depression first and then the resulting RLS because the depression is more important.
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.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to Discussion Board

Post by stjohnh »

bklyn62 wrote:Well, my neurologist has me on Gabapentin in two divided doses in the evening, and the sleep doctor put me on an iron supplement, because my ferritin was low.
Welcome bklyn62.
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

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

Re: New to Discussion Board

Post by badnights »

the RLS experts also will say that it is important to treat depression first and then the resulting RLS because the depression is more important.
This should actually be decided on a case-by-case basis. What Steve means is that, when the depression is more important, it must be treated first. Then, any WED/RLS caused by the anti-depressants has to be dealt with by additional meds (but only after trying to find an AD that does not cause or aggravate WED/RLS in that patient). But there are cases in which the WED/RLS is more devastating to the patient than the depression, and in those cases, the WED/RLS should receive medication first.

Whoever is taking care of you is doing well not to put you on a dopamine-type medication. Those are still regarded as front-line meds for WED/RLS by most doctors, but experienced specialists are realizing that they are not a good idea for most of us, since they usually backfire and make the disease worse (augmentation). So gabapentin is better than the dopamine-type meds. Probably Horizant (gabapentin encarbil) would be even better, less erratic in its effects, but it is more expensive. With either of those meds, watch out for mood swings or worsening mood; if it happens, reduce the med and contact your doctor about stopping it completely (it causes suicidal depressions in some people).

But try to keep your dose of gabapentin or whatever you take as low as possible. Depending how low your ferritin was, you might be able to get an infusion. That would be the best thing, as far as we know; but maybe you can solve the problem with only oral iron, which would be great. It should definitely help, if not solve it completely.

I also personally believe that major changes in diet can have beneficial results. Ditch "foods" with added sugar and heavy processing. Eat whole foods as much as possible, and lots of vegetables of a wide variety in order to get all the vitamins, minerals, anti-oxidants, and other micronutrients your cells need to function properly. Consider eliminating grains, or gluten. I reduced my medication by over half by going on a diet like this (stopping both gluten and dairy).
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.

bklyn62
Posts: 4
Joined: Fri May 08, 2020 3:08 pm

Re: New to Discussion Board

Post by bklyn62 »

Rustsmith wrote:Anti-depressants are a well established trigger for RLS for most of us. The only exception is that sometimes Wellbutrin can be used without causing RLS problems. For many of the ADs, RLS is even listed is a side effect of the medication, so getting off of them will often also resolve the RLS problems.

However, the RLS experts also will say that it is important to treat depression first and then the resulting RLS because the depression is more important.
Thank you for your input. I am on Wellbutrin as well...the SSRI was added back in recently. Fortunately I have a telehealth visit with my psychiatrist tomorrow morning. And I hope I'm posting this reply properly LOL.

bklyn62
Posts: 4
Joined: Fri May 08, 2020 3:08 pm

Re: New to Discussion Board

Post by bklyn62 »

stjohnh wrote:
bklyn62 wrote:Well, my neurologist has me on Gabapentin in two divided doses in the evening, and the sleep doctor put me on an iron supplement, because my ferritin was low.
Welcome bklyn62.
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Thank you, I will discuss this with my neurologist and sleep dr!

bklyn62
Posts: 4
Joined: Fri May 08, 2020 3:08 pm

Re: New to Discussion Board

Post by bklyn62 »

badnights wrote:
the RLS experts also will say that it is important to treat depression first and then the resulting RLS because the depression is more important.
This should actually be decided on a case-by-case basis. What Steve means is that, when the depression is more important, it must be treated first. Then, any WED/RLS caused by the anti-depressants has to be dealt with by additional meds (but only after trying to find an AD that does not cause or aggravate WED/RLS in that patient). But there are cases in which the WED/RLS is more devastating to the patient than the depression, and in those cases, the WED/RLS should receive medication first.

Whoever is taking care of you is doing well not to put you on a dopamine-type medication. Those are still regarded as front-line meds for WED/RLS by most doctors, but experienced specialists are realizing that they are not a good idea for most of us, since they usually backfire and make the disease worse (augmentation). So gabapentin is better than the dopamine-type meds. Probably Horizant (gabapentin encarbil) would be even better, less erratic in its effects, but it is more expensive. With either of those meds, watch out for mood swings or worsening mood; if it happens, reduce the med and contact your doctor about stopping it completely (it causes suicidal depressions in some people).

But try to keep your dose of gabapentin or whatever you take as low as possible. Depending how low your ferritin was, you might be able to get an infusion. That would be the best thing, as far as we know; but maybe you can solve the problem with only oral iron, which would be great. It should definitely help, if not solve it completely.

I also personally believe that major changes in diet can have beneficial results. Ditch "foods" with added sugar and heavy processing. Eat whole foods as much as possible, and lots of vegetables of a wide variety in order to get all the vitamins, minerals, anti-oxidants, and other micronutrients your cells need to function properly. Consider eliminating grains, or gluten. I reduced my medication by over half by going on a diet like this (stopping both gluten and dairy).
Thank you! I will ask my neurologist about Horizant when I see her next. Also, I recently removed gluten from my diet due to GI issues, and I'm careful about lactose, as I'm lactose intolerance....but perhaps I will try dairy free as well! I appreciate your suggestions!

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