I have had RLS and PLMD as long as I can remember. I’m sure all of those nights I struggled with symptoms as a child that were brushed off as growing pains…RLS. My mom suffers mildly. Unfortunately, both of my daughters also have many challenges that began as teens. What I’ve been through is so complex, with over thirty medications tried n the last several years, yet I suffer. I
I had serious augmentation after seven years in pramipexole 2 mg and Gabapentin 2400 at 5, 8, and 10 pm to no avail so Neurontin/sleep said taper quickly and it was disastrous. I had to go much, much more slowly. A complicating factor for mr is that I have an 8 level spinal fusion which was the original reason I was put on gabapentin - nerve bundlling and damage from that. Now, I am feeling some of those effects for the first time (surgeries sor fusion were in 2010) and it’s tough to tease apart what is RLS, PLMA, Neuropathy, radiculopathy, etc. I had iron infusion in December. At 3 weeks, ferritin was 1;200. I’m waiting for current results. My only current medication is cannabis although illegal whee I live.
Needless to say, my sleep is so fragmented. They have diagnosed delayed sleep phase onset. I took six 5 mg diazepam last night. And still it was 5:30 a.m. before I got settled. What this has done to our lives - he leaves for work when I fall asleep, I no longer drive, we don’t travel or host houseguests. It’s been very lonely and I’m truly heartened nd grateful to find kindred spirits. Apologies for any typos — I have two broken fingers and recent shoulder surgery so it’s another challenge I’m working on. Thanks for all advice and support.
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SleeplessinNC
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I'm so sorry to hear you are struggling with RLS.Spinal damage is a known cause/trigger for RLS. I've posted research articles on it before.
I am glad to hear you are off Pramipexole. That worsens RLS over time.
How are you managing without any meds? Iron infusions help the majority of RLS patients, but, in your case, the Spinal fusions and nerve damage will be the ongoing cause.
Gabapentin/neurontin helps both nerve damage and RLS. Have you stopped that?
Gabapentin doesn't help RLS much when one is on pramipexole. Also you were taking it wrong. Dividing the doses by 2 hours is correct but a dose over 600 mg isn't well absorbed so for example if your dose was 900 mg, it is as though you were only taking 540 mg.
As you discovered one should never stop just stop gabapentin. One should reduce by about 100 mg to 200 mg every 2 weeks and if done that way one would have NO withdrawal effects.
Why did your doctor want you off gabapentin? Unless there was a good reason I would start taking it again. It will take 3 weeks for it to be fully effective. I wouldn't try just starting with 2400 mg. Start low, wait 3 weeks and then Increase it by 100 mg every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." If you need more than 1800 mg switch to pregabalin which can be take all at one time. The equivalent to 1800 mg would be 300 mg. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
You may need to take a low dose opioid. I would advise buprenorphine as it lasts 24 hours where as other only last 4 to 6 hours so need to be taken that often or you would get mini withdrawals.
You are taking an awful lot of diazepam. If you reduce that, it too needs to be weaned off slowly.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Hello Sleepless, Sue and Jools are the experts here, but I just wanted to say that you are so not alone with the impact RLS has had on your life. Like you I no longer have much of a social life - just a handful of loyal friends who understand when I need to cancel last minute. My husband and I can't go out at night, we have pretty much no social life together. I can't find a job because I'd be too unreliable. It's really hard and takes a big toll on your family and your marriage.
I've found so much helpful information and support on this forum. It really helps to know you're not the only one suffering. I'm sending you supportive wishes from London.
Dear SleeplessinNC, I sympathize with your struggle and must say that mine has been much less severe than yours. I agree with SueJohnson about removing Pramipexole from the medication regime. My experience after using a little less Gabapentin than you are using was to switch to Horizant under my Sleep Medicine Specialist's orders. It is very expensive which cI wan be off-putting. If you can get approval from your insurance company, you may find that it can cost as little as $135 for a 90 day supply which is what I am paying under my Medicare part D coverage. At 600mg taken at 5 p.m., my symptoms have been greatly reduced. This is after experiencing Augmentation as you have. Horizant is a type of time released G abapentin where the medication that you take is converted by metabolism to it;s active form. I wish you the best where you are dealing with the spinal issues as well. It sounds like your personal life is badly impacted. I can sympathize. Family and friend support is so valuable under these circumstances. Also, the adive from this website is generally very good. This is where I was introduced to the article on The Management of RLS by the Mayo Clinic that was released in 2021, I believe. I am unable to attach my copy to this response so, perhaps, one of the other contributors can do that. Please, look it up and share it with your doctor. I shared it with my specialist and my PCP. The specialist thanked me. The PCP did not. I find that PCPs are woefully undereducated on the treatment of RLS and are inducing Augmentation by prescribint Dopamine agonists inappropriately. They are not checking Iron and Ferritin levels or advising patients on lifestyle changes like removing caffiene and red wine from their diets. Now I will get down from my soapbox and wich you some relief from the nightmare that you are experiencing.
Thank you. I’ve failed Horizant along with over 30 different drugs they’ve tried for both the RLS and accompanying insomnia. I did just have another round of lab studies and I’ll reach out to Sue today with those numbers. I appreciate you sharing your experience.
Sleepless welcome to the community. We all get it. You will find fabulous support here. It is my understanding that you are currently not taking anything for your RLS except cannabis, which doesn’t seem to be very effective. Perhaps you need to find a neurologist who is knowledgeable of this disease. If you don’t have one, you can check RLS.org and find someone in your area who can help. We are all here for you!
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