Dynamics of RLS

[Rlssimmbob]

What causes an exacerbation of RLS when lying down and, to some extent sitting, and why does walking help?

[SueJohnson]

Good question. I'm afraid I don't have an answer. Is your RLS under control?

[Rlssimmbob in reply to SueJohnson]

Thanks for prompt and honest reply as well as your advise. I have had RLS for over 60 years. Of course, there was no diagnosis back then. As I have aged (now 93) RLS has relentlessly increased . I had started with Gabapentin about 20-30 years ago with head of a sleep department in NYC. Had increased to 1200 with no positive effect. After a conference with several sleep experts, I began experimenting with medical marijuana, and several medications on which I augmented but had no difficulty stopping. I have had some success with Oxycodone and 600-900 Gabapentin, but symptoms are increasing. Alcohol increases symptoms. Do not know where to turn, especially since I get about 6 hours of sleep per night. This certainly is a mysterious malady and feel for all the desperate folks out there, especially with docs with limited knowledge.

I have the impression that RLS is a final common pathway for several possible dysfunctions: dopamine levels, ferritin in the brain, nerve conduction, diet, and emotional issues. Best of much needed luck as we experiment with an N of 1

[SueJohnson in reply to Rlssimmbob]

Alcohol is a definite trigger for most people. I would advise not drinking any. You mention ferritin so I assume you had yours checked and it is over 100. Some things that can make RLS symptoms worse for some people are nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, electrolyte imbalance, melatonin, and vigorous exercise. Some things that help some people include moderate exercise, weighted blankets, compression socks, botox, masturbation, magnesium glycinate, buspar, low oxalate diet, selenium, Dipyridamole, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, massage including a massage gun, yoga and red light therapy. On the gabapentin, you may need more. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Https://mayoclinicproceedings.org/a... Increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before the gabapentin. Are you taking any medicines or over the counter supplements? Many can cause worse RLS symptoms. If you can list them, I can tell you whether any of them do this and perhaps provide safe alternatives.

[Rlssimmbob in reply to SueJohnson]

Warfarin 3-4 mg, Digoxin .125, Triamterene HCL 37.5-23, 5 mg, Amlodipine, 5 mg, Chelated Iron, Magnesium (in AM), Calcium, B Complex, Tumeric 500mg AM & PM

[SueJohnson in reply to Rlssimmbob]

Amlodipine can cause increased RLS in some people. Clonidine treats high blood pressure and is safe for RLS. You might want to discuss it with your doctor. Triamterene is a diuretic and can cause increased symptoms and unfortunately there is no safe substitute. The same is true for Warfarin. Digoxin and your OTC supplements are all safe except tumeric interferes with the absorption of iron. Magnesium and calcium also interfere so take them 2 hours apart from iron. Hope this helps.

[Munroist]

I suspect it’s related to dopamine levels. Dopamine is a neurotransmitter involved in movement so I assume when you move there is more dopamine ‘in play’ in your body. This is consistent with the fact that dopamine agonists which help RLS initially, make you more sensitive to dopamine so it looks like there’s more around. Also your circadian rhythms drive the dopamine cycle which is lowest around late evening and the early hours of the morning which is when “normal” RLS occurs. That is my personal view but nobody really seems to understand the exact mechanisms and causes, otherwise we might have better treatments by now.

[DicCarlson]

Yes, it is interesting that standing/walking almost eliminates RLS. I read of a fellow who could find relief by pushing on the foot board of his bed - essentially mimicking standing while staying prone in bed.