Insomnia due to RLS

[Tailwind53]

For well over 10 years, Ive dealt with RLS. Most likely as a result of other medications, as well as anemia caused by Thalassemia minor, as well as thyroid decline. Started off taking ropinorle, which caused significant nausea if I failed to take it with food. At the same tome I was also dealing with bone on bone knee problem, requiring several years of pain management prescriptions- so possibly RLS also a result.

in a couple of weeks, I will be 70, and “all of a sudden” gapapentin dose was not affective/ switched to Lyrica, low dose also not useful.

The result is very little & poor quality sleep.

seems Im in good company here. Let me also clarify- I live in tje SE USA, state of Georgia. Im on medicare with excellent coverage- so no $ spent when seeing primary care provider, and I have a fluent conversation, which they usually respond in a few hours. However, the dr seems reluctant to prescribe an adequate dose (currently 75 Lyrica.) So Im getting more insistent- as most of you know that insomnia & RLS is torture.

[SueJohnson]

First off have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.If you haven't when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Tailwind53 in reply to SueJohnson]

Yes- blood work recently show ferritin as “low, but within the norm” It’s a challenge for me, I do have prescription strength iron/ as well as vitamin C.

[SueJohnson in reply to Tailwind53]

Do you know the actual number? Doctors will tell you it is within the norm, but what is normal for others is not normal for those of us with RLS. As far as taking the iron, hopefully your doctor has told you: Take it every other day or since your ferritin is low you could take in every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Also antacids interfere with the absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets. Also is there a reason you are taking a prescription medicine? If it is covered by insurance that is fine but if not there are OTC ones that don't cost much.

[Tailwind53 in reply to SueJohnson]

my insurance covers most 100%, I also receive as part of insurance $100 for OTC, or anything health related, including food

[Tailwind53 in reply to SueJohnson]

My ferritin is 39, iron saturation is 10, regarding Hematocrit- MCV -64, MCH- 18.8, MCHC- 29.3, RDW-19.7. Also, informed dr that 75 mg of pregabalin was ineffective for my RLS, she gave me a prescription for 100, but can’t be filled until May 17.

[SueJohnson in reply to Tailwind53]

Since your saturation is so low, you should ask for an iron infusion. If you can't get that, post back here and we can give you some advice.

[SueJohnson]

Second as you know 75 pregabalin is a very low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."Print of the section of the Mayo Clinic Updated Algorithm on RLS dealing with that and refer your doctor to it as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Third some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 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, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[SueJohnson]

Fourth for insomnia I would suggest lunesta or ambien, neither of which are benzodiazepines. Ambien is recommended for short term or intermittent use but lunesta is not.

[Tailwind53 in reply to SueJohnson]

thanks for all the info- esp recommendations at Mayo. I limit carbs, sugar, and am moderately active- having horses and living on farm. Easy for me to become dehydrated- so have consciously drinking water all

Day as well as bio-lyte i have a prescription for ambien - max .5 quantity of 10 per month will inquire about lunesta

Thanks

[Oregonmike]

is yours the Beta form of Tm? I’ve read one causes a severe form. If you don’t mind sharing, I would venture to say your iron, ferritin , all that , is causing this. I hope you get relief. We should add a word to the RLS acronym -T for torture .

[Tailwind53 in reply to Oregonmike]

Im not sure - will check with hematologist. But yeah, it’s torture, and frustrating trying to figure out the next best thing.

[Katyparis]

I thought gabapentin was also Lyrica.

[ChrisColumbus in reply to Katyparis]

Lyrica is a brand of pregabalin, in the same way that Neurontin is a brand of gabapentin:

drugs.com/medical-answers/d...

[SueJohnson in reply to Katyparis]

They are pretty much different forms of the same drug. With gabapentin you need to divide the doses so you don't take more than 600 mg at the same time, but with pregabalin you don't and although the side effects are pretty much the same, some people find the side effects on one don't bother them on the other.

[Lolly53]

Hi! I live in Texas. I am your age (70 in July) and have had RLS since my 30’s but it is being managed very well now and I want to encourage you to get in touch with my neurologist in Houston, Dr. William Ondo. He is one of the few doctors in the entire USA who specialises in RLS. I am so fortunate to have found him. Google him, read about his contributions to the RLS community, and make an appointment. You will not regret it. He and his staff are really nice and he has many many patients who are being successfully treated for this horrible condition.

[Ephemera in reply to Lolly53]

Can I ask what are you taking to help?

[Lolly53 in reply to Ephemera]

I have been on a low dose of Methadone (5mg) for over 5 years. A true life changer for me!

[Tailwind53 in reply to Lolly53]

Good to know. Will mention to my pcp- expect they will look at me sideways.

[Lolly53 in reply to Tailwind53]

My pcp was thrilled to be able to refer me to Dr. Ondo because he knew that my RLS treatment needed to be addressed by someone who was more familiar with this condition. I hope your doctor would feel the same. Most pcp’s are not comfortable prescribing the needed medications because of the new red tapes and rules that have been put on them. But Dr. Ondo has the reputation with the powers that be to prescribe without fear of retribution. I really really hope you will pursue this option. He is affiliated with Methodist Hospital in Houston with an office in the Medical Center.

[Tailwind53 in reply to Lolly53]

Thanks- I’m so tired (literally) of this practice being so hesitant to prescribe something that actually works.

[Tailwind53 in reply to Lolly53]

well, definitely. Two of my sons live in the DFW area, but would definitely travel down to Houston. Thanks

[Lolly53]

We in the US have more access to some of these drugs than people in the UK, which is this forum’s main audience. I will look forward to hearing your progress!

[Tailwind53 in reply to Lolly53]

Hello Lolly, Thanks. I looked up the dr you told me about. Will discuss on Friday at my appointment with PCP. Armed with more knowledge, I appreciate the RLS information on the forum. Interesting to read about others experiences.