I haven’t written in a while but I read all of the comments. New neurologist who aligns with the mayo clinic philosophy. After a painful weaning off of pramipexole I was actually doing great on 1200 mg of gabapentin and .50 mg of clonazepam. I take oral iron and my ferritin level is around 52, which I questioned, and the neurologist said the other numbers indicated I am in OK place. I have been taking oral iron for over two years. .325 mg ferrous sulfate. After months of sleeping quite well, I would have at least one night a week of symptoms. After a good check up with the neurologist, he recommended I slowly wean off of the clonazepam. I am up every night! I have tried all of the suggestions that I’ve read here (magnesium, and now an exercise massage gun, and potassium, chamomile tea), along with those I know are bad for RLS: wine. All I want to do is fall back to sleep. I find myself obsessed with this madness. I dread going into the bedroom at night. When I wake up after about the third or fourth time I start to get scary thoughts of not being able, nor wanting to live like this anymore. This is hell. I am tired and I don’t want to do anything during the day, and I find whether it’s I’m tired or dwelling, my memory isn’t as sharp. I have reached out to the neurologist, he hasn’t responded yet. At my last appointment, he mentioned if I continued to have symptoms, we could maybe try an opioid. A few years back, my previous neurologist prescribed that, and I hated the way I felt in the morning.
I have lumbar spine compression and have on and off SI pain and cramps. My legs are painful to the touch.
Any suggestions, thoughts? Mentally I’m really in a bad way.
Barb
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Bks429
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The clonazepam has a half life of 40 hours and can make you tired the next day. A better alternative is ambien which is not a benzodiazepine or xanax or ativan. Your ferritin level of 52 is not OK, which if your doctor is familiar with the Mayo Clinic Updated Algorithm on RLS he should know You need it over 100 which helps 60% of people who have RLS. If you haven't had it tested recently, you should have it tested again. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. On your gabapentin, are you taking 600 mg 1 to 2 hours before bedtime and the second 600 mg 4 hours before bedtime, since it is not well absorbed above 600 mg. An opioid is a good idea and I'm sure others who are more familiar with the various opioids will be able to give you advice on one that does not make you feel bad in the moring. Another possibility is dipyridamole which has helped some people,. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Also if your memory isn't as sharp, that may be a side effect of gabapentin. You might want to try pregabalin instead. Although it is basically the same and the side effects are usually the same, some people find that a side effect that bothered them on one doesn't bother them on the other. 200 mg of pregabalin is equivalent to 1200 mg of gabapentin. If that works, you could increase the pregabalin by 25 mg every couple of days until you find the dose that controls your symptoms. Are you taking your iron with 100 mg of vitamin C or some orange juice which helps with its absorption and at least 1 hour before and 2 hours after a meal and preferably at night?
Thank you Sue. When the doctor gets back to me I will address the medication you suggest. I’ve also just sent him a message and asked why my feared and level is okay when, yes I have read that also, it should be at least 100. Yes, I do take C with the iron.
If you need something for your depression, ask for trazodone which is safe for RLS. Most others will make your RLS worse. Are you taking any medicines besides gabapentin or over the counter supplements? If you list them I can tell you whether any of them will make your RLS worse and perhaps can provide you with a safe substitute.
All statins make RLS worse. Talk to your doctor abut NEXLIZET or Ursodiol which are not statins. Synthroid can also make RLS worse but I don't know of any safe substitutes.
Levoxyl is a bit more expensive, pharmacy's don't generally stock it. It is gluten free. It is a little different than levothyroxine but many insurance companies wrongly equate it and want you to take the cheaper levothyroxine. Armour thyroid and other natural animal sourced are not in favour by Dr.s. I did great on Armour for years until the formulation was changed by Allergan who bought it. Good luck
I hate to even suggest as I know the despair when things fail. Some years back, a 70-something years-old lady described her use of kratom, a largely SE Asian herb for her significant RLS. I have since adopted its use as well. It's not a panacea, but I get 6 hours of sleep a night. Start exploring online, the stuff is legal, available online. The Reds are best for sleep and rls. Good luck.
I take it, too. People should keep it on hand for those desperate nights, as the red powders work within 10 minutes. I would prefer to use something else long term, and I am working on that.
Do you just take one dose to sleep for 6 hours? I have to keep taking it.
I make a tea before I go to bed, not quite a tsp of a red, dump in a chamomile or lemon balm capsule, honey hemp. Take a swig at bedtime, another when I wake up. Always stops the rls, not always getting back to sleep. Would like to try THC gummies.
You are doing so well with such a low dose! I have to repeat the one or two teaspoons a number of times overnight.
THC gummies can help you sleep through the RLS but, so far, I haven't found any that take it away.
Delta 8 is easy to get and seemed exactly the same as the THC gummies I have tried. It definitely put me out and helped me to sleep through some of the rls. But, again, did not eliminate it like kratom does.
I know how you feel and I'm sure there are lots of other folk who have experienced this total inability to sleep. Last night I had periods when I simply could not fall asleep. It is so frustrating and the tiredness is continual. However I've just had to accept it and adjust my day/life accordingly. I'm having a telephone consultation with my doctor today to tell him what changes I need with my medication as I know more about RLS than he does (which is a pity really).As ever Sue has good advice and so I pray that you will find away through.
You may want to give a high quality CBD oil a try. It doesn’t help with the RLS but it could help with the sleeplessness. I take 100mg. two hours before bedtime as well as Oxycodone. I still wake up but can eventually fall back to sleep.
Hi, I too have a severe case and have tried many different things. Some of the things I use daily are oregano oil to calm the symptoms associated with digestive problems, controlling my gut is essential. And magnesium oil externally, I use the oil everyday and couldn't live without it. It really helps. I also get relief from carrot juice as it reduces gut inflammation very well. It is high in sugar but I find that it's worth it. I use tramadol and have for many years for the nerve pain I have associated with rls and on and off mucuna puriens, which is a natural form of ldopa. I have much less trouble taking the natural form. In short, magnesium oil (externally) and oregano oil are essential for me and do give me the most consistent results. Don't give up, I know that you're suffering. Be careful how much you eat at at meal times and keep trying and take care of yourself.
Can you get THC, such as Delta 8 or Delta 9 gummies or tincture? It is very helpful for sleep. Google it and see if it's legal in your state, or if you live close enough to drive across the border. Most of all, don't let nighttime thoughts take hold of you. Nighttime thoughts are different than daytime thoughts.
1200 stopped working for me so I increased to 1500mg - works almost 100%. My doc at MGH in Boston says ferritin needs to be >100 and drawn after not taking iron for 3 days. I also take 5mg Indica THC for times I really want a good long sleep but I have a medical marijuana card. Lasting Wellbutrin for depression as it is the only anti depressant which does not worsen RLS. It also has shown to help with RLS symptoms. I’m a nurse practitioner who has suffered with this condition for 37 years and totally understand how u are feeling. I so hope these recommendations help u. Lastly u can go as high as 3600 mg of gabapentin- good luck
I also see a doc at MGH in Boston…guessing the same one (Dr. W perhaps?). He told me the Ferritin level alone doesn’t matter. My ferritin level is never above 100. It’s almost always below 50. Dr. W told me ferritin is one component in a calculation, not enough to treat. Has he told you this as well?
My doctor is referenced and quoted in that 2018 article you posted. I am fortunate to be treated by one of the world’s leading RLS experts. My Ferritin level is never >100. My ferritin is usually around 50 and he tells me I’m 👍. According to my physician, ferritin is only one component in a calculation that also requires iron and TIBC to determine iron deficiency as a cause of RLS.
I’m not sure I’m comfortable sharing my doctor’s name but he is on the RLS Foundation Scientific and Medical Advisory Board and he’s the Chair of the International Restless Legs Syndrome Study Group. He was the chair of the American Academy of Neurology Practice Parameter Committee for the treatment of RLS. My 6 month appointment is this week. I will ask him about the ferritin calculation. 😊
Yes- and a sleep specialist. I take one tab a day with vitamin c and have achieved this but he also is considering iron infusion if I cannot keep it up orally.
My husband, in his 70's has been in your shoes too, for many years. Everything that seems to help, for a period of time, has such bad side effects. He too has chronic back problems with two surgeries in L2-6. My son is struggling with back pain and was sent to a clinic for ablations. Although he rejected this plan at his age, I thought about it and started reading about ablations for chronic back pain on those with RLS. Many people on this site have talked about it, some had great results. The catch is, in this country at least, spinal ablation is not authorized treatment for RLS. You say you have chronic back problems. I believe RLS and chronic back problems exacerbate each other. So, my suggestion is to inform yourself about it. If you are interested in the procedure, discuss with your primary a referral to a pain clinic that performs ablations. Discuss it with the pain clinic about your back pain, Your insurance would authorize this once you've jumped through all of their flow chart treatments, from least invasive on up. I am going to discuss this with my husband's primary. Wish you well.
I'm sorry I missed your question. His RLS worsened with age and his back problems. He suffers both upper and lower limb RLS. He has had 2 laminectomies, has been on Ropinirole and ibuprofen until it didn't work anymore, then pramipexole for years and also augmented on this. To add his back pain has been treated with Oxy for years. He has now withdrawn from the pramipexole and is using Tramadol for both RLS and back pain with a small amt of oxy and ibuprofen when needed. His bad nights and good nights are about equal. He is considering going to a pain clinic to see if he qualifies for a non-medication treatment for both. I will let you know how he fares. This will be a while.
Has he had his ferritin tested? If not let me know and I can tell him how to do it. Has he thought about taking gabapentin which can completely control his symptoms? Gabapentin is used for pain as well as RLS. Again if he is interested I can tell him more about how to take it.
I had to increase to 1800 mg of Gabapentin to get relief. I take 600 mg at 4 p.m., 6 p.m. and 8 p.m. before going to bed around 9-ish. I read until I fall asleep and that usually doesn’t take very long. This works for me 95% of the time, thankfully, and I am so grateful my doctor was willing to work with me to find a dosage that would be effective. Perhaps this is worth a try for you, too.
I had the same problem with my "ivory tower" neurologist not getting back to me in the midst of my desperation. For some bizarre reason I felt guilty for repeatedly calling. Madness. Pester them! Don't mention treatment options, and try not to come across as a crazy person (who wouldn't be crazy???), but be persistent. You can even say, "I'm sure Dr. So and So would not want me to be suffering like this." Keep your voice calm, but keep calling!
Hello! May I ask which opioid you tried. They are not all created equal. Methadone has changed my life. I have suffered with RLS for 20 years, gone through Requip augmentation, tried Gabapentin and Lyrica and every possible home remedy you can imagine. I participate in a study looking at the efficacy of low dose opioids and the results for those taking Methadone are excellent. I take 5mg twice every evening. I have zero side effects. Gapapentin and Lyrica both caused me to have blurred vision, significant weight gain, daytime drowsiness and memory loss. RLS sucks. I don’t want to take anything and have been willing to try just about everything. Best wishes.
It was a couple of years ago I think it was Codeine with acetaminophen? I just woke up like a zombie. The gabapentin doesn’t really seem to do anything. The doctor increased it to 1200 doses two hours apart. My first dose was last night and I woke up with a headache and it took me till around noon time to wake up.
When you took an opioid before, did you try Tramadol? A 25 or 50 mg dose of Tramadol may provide the relief you need. I’ve taken Tramadol for over 20 years and at a low dose, I’ve never had any hangover effect the next morning. A really high dose of 300-400 mg of Tramadol is what can cause a hangover effect. Best wishes and I hope you get some relief, and some sleep!
Hi Barb Not sure how old is your message. I totally and utterly understand how you feel. Myself I feel i want to wipe the slate clean and wake up and everything of my past is gone. I’m not young anymore 60 so I dwell on death all the time. I’m in a better place re my life standards but still feel this desperate deep down depression I can’t clear. My mind is full of bad thoughts all day and I relish bed where I take my meds and sleep.
Merster here. I went through all the standard Drugs supposed to help so many but for me no relief. Until I spent a night in emergency with a kidney stone. I was infused with Morphine and for 5 daya afterward my Rls was non existent. My GP allowed me to go on low dose ms Contin ( morphine suphate) and continued a low dosage of ropinerole. Since then I have been nearly 100% RLS free and no augmentation of the Requip. This combination saves my life as I was in that place considering suicide. Maybe something to consider for yourself
Hi Barb. I am so sorry for how you are feeling and what you are experiencing. I am sure a lot of us have felt the same. I have!!Last November my doctor put me on Methadone(Metadol ) and it has been life changing. This is not an exaggeration ! I was often suicidal in the middle of the night and it was only the repercussions on my four children that held me back. But I can say that nighttime made my life seem unbearable.
I started with 1 mg and have worked my way up to 3mg at bedtime. I now rarely have any symptoms and if I feel a tickle beginning(usually due to dosing to late) then I pop a couple of Hylands restful legs under my tongue and even that is gone!
I don’t know how long this will last but I am just enjoying feeling normal and sensation free for as long as it does!! I hope you can find similar help. All the best
My GP prescribed trazodone to help me sleep. It’s a little better, I fall asleep wake up, restless legs, but eventually fall back to sleep and then I am asleep for the night. My RLS specialist said next step low-dose methadone. Of course, I read the side effects of methadone and it talks of heart arrhythmias. I also have a fib. (I am taking 1500 mg of gabapentin the correct way two hour intervals.) Any comments, please, regarding afib and methadone?
Hi there, I have had afib in the past from amitriptaline (sp) but I have not experienced it on this low dose of Methadone, however each of us is different so I can’t speak to your possible response. All the best, Teresa
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