Struggling to find some balance

[Sulybu]

I'm 66 years old and have had RLS requiring medication for about 12 years. The only thing I'd ever taken was Gabapentin. I was on a pretty low dose for years and years and then about 3 years ago, it wasn't working very well. The doctor increased the dose. And then increased it again, and again and again until I was on 2400mg. At that point he said, "sorry there's nothing else I can do for you." I had some choice words for him and where he could go, and found myself a new doctor. That doctor put me on Mirapex. It was a miracle at first because I slept like a baby for a year, and then - didn't. By that time, this second doctor was working part-time and not responsive to what I was going through. So I found a new doctor again. This one's a keeper I think. She explained that I was experiencing augmentation and that I would have to wean off the Mirapex, not increase it. While doing so she added Lyrica. Let me just say that withdrawal from Mirapex was horrendous! Plus during the 6 weeks on this plan I gained 12 pounds (I suspect from the Lyrica). After 6 weeks the RLS was back in full force. It amazed me that I could do a mile on a treadmill and 5 miles on a stationary bike plus pace most of the night, and not lose any weight, but there it is. So last week, she switched me to Horizant. Thankfully, this seems to be working for the RLS. But now I have a new problem. Insomnia. I go to bed and fall asleep fairly quickly. But I can't sleep longer than 2 and a half hours and then I'm wide, wide awake. I get up and read, watch TV, read some more. And then maybe at 5 or 6am I can sleep again - for another 2 or 2.5 hours. I know that sleep aids are not supposed to be good for RLS. But has anyone used Ambien or something like that just temporarily to get your sleep and wake cycle back on track? I just want my life back.

[SleepyBhamster]

I'm sure you will get more helpful advice from others, but let me recommend you check out the podcasts called "The Golden Hour" with Dr. Kevin Majeres and Sharif Younes. The have a website, OptimalWork.com, that is a membership based support system to help people do their best work possible. I didn't think anything could possibly apply to me since I'm 59 and have stayed at home since being diagnosed with lupus 18 years ago. But the podcasts, which were started to help their members during the COVID lockdown, are about things that most everyone could use help with: anxiety, dealing with difficult people, procrastination, insomnia, etc.

So check out episode 4. Getting Effective Sleep as well as 24. The Key to Mastering Sleep (and anything else!). I see that the latest one, episode 57 is also about rest, but that could mean relaxation as opposed to sleep.

Here's where I found the complete list: https://anchor.fm/optimal-work But I usually listen on Spotify or SoundCloud.

I'll be praying you get some relief as I know how it is.

[Sulybu]

Thanks, I'll give it a whirl

[Polar Bear]

Sulybu - with regard to your insomnia I could have written your post. I sleep for about 2 hours, get up and read, check emails etc for 2 or 3 hours, and then back to bed at around 5 or 6am. If I'm lucky I'll get another 2 or 3 hours. Being retired I can sometimes get a decent daytime nap but more often than not I am tired and weary but not sleepy. But absolutely nothing will work for me.
RLS insomnia is very particular to RLS and quite unlike the insomnia that might be experienced by non sufferers. Sleeping aids such as Ambien don't really work for us. Sometimes the Benzodiazepines can help with sleep, clonazepam (Klonopin), and temazepam (Restoril), are sedatives. They do not so much relieve symptoms as help you sleep through the symptoms.
Antihistamines can sometimes help aid sleep but also antihistamines can negatively impact our RLS.
It is matter of trial and error to try and find if one of these will work. We are all so different in what does/or does not help.

If RLS symptoms are not under control it is often the case that these symptoms may over-ride the effects of any sleep aid. It can be quite dangerous to be sedated whilst needing to walk and be active in the attempt to settle the RLS symptoms.

[SleepyBhamster]

Oh yes, Betty makes a good point. My RLS symptoms have been quiet--maybe starting up again and I'll need another iron infusion--so I wasn't even thinking about insomnia due to RLS. (And I seem to have the stomach flu now, so not thinking the most clearly.) As someone with lupus and RLS and other health problems, I've often found myself asking my husband, "But do you think Dr. Majeres is taking chronic illness into consideration?" His advice is great, but may be geared to the physically healthy.

[stjohnh]

Two points to add to what Betty wrote: First, RLS is due to Brain Iron Deficiency and you should attempt to get iron treatment.

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://reader.elsevier.com/reader/sd/p ... 83A240A179

Second: As Betty pointed out, the insomnia of RLS doesn't usually respond at all to the usual sleeping meds, including prescription meds. The only reasonably consistent help for RLS insomnia, once urge-to-move (leg jumping) is controlled, is from medical marijuana (THC) or from the gabapentin/Lyrica/Horizant group. If marijuana is legal where you live, that should be one of your attempts at treatment. These meds don't help all people with RLS, but seem to help more than anything else.

[Sulybu]

Thank everyone. All this is helpful for discussion with my doctor next week. The iron information especially. My doctor did mention this but felt that my current iron level was sufficient. But maybe not. And I can get medical marijuana here.

[badnights]

The concentration of iron is different in different organs of our bodies. Holland alluded to this. It's important for you to know, because even most doctors don't appreciate it. The iron concentration in the blood can be "normal" while at the same time in the same person, if the iron in the liver was measured, the person would be declared anemic. (You can read something similar in the 2018 consensus paper that Holland linked to - p.28, 2nd column, first full paragraph. When they say "erythron" think "red blood cells".)

In people with WED/RLS, our brain is deficient in iron. This is true even for those of us who have normal blood iron.

Regarding your insomnia: See my post here: viewtopic.php?p=105519#p105519
I really think you should try melatonin before going the sleeping pill route. It takes effort and motivation, becuase it's not quite as easy as just taking a pill... but how I wish I had done it 10 years ago!