Depressed and desperate: I haven’t... - Restless Legs Syn...

Restless Legs Syndrome

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Depressed and desperate

Bks429 profile image
59 Replies

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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SueJohnson profile image
SueJohnson

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...

SueJohnson profile image
SueJohnson

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?

Bks429 profile image
Bks429 in reply toSueJohnson

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.

SueJohnson profile image
SueJohnson

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.

Bks429 profile image
Bks429 in reply toSueJohnson

Gabapentin 600-2x) Synthroid 50mcg, Tiadylt ER 120 mg, Rosuvastatin 10 mg, Fish oil 900 mg, B12 5000mcg, D3 1000IU, Folic Acid 400 mcg, B1 100 mg, B2 100mg, Cal-MAG Citrate 2:1 ratio.

SueJohnson profile image
SueJohnson in reply toBks429

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.

Tobytime18 profile image
Tobytime18 in reply toSueJohnson

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

SueJohnson profile image
SueJohnson in reply toTobytime18

I think you probably meant this as a reply to Blks49.

eglimark profile image
eglimark

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.

TeddiJ profile image
TeddiJ in reply toeglimark

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.

eglimark profile image
eglimark in reply toTeddiJ

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.

TeddiJ profile image
TeddiJ in reply toeglimark

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.

eglimark profile image
eglimark in reply toTeddiJ

I don't take more because it has a depressive effect if I overdo it.

TeddiJ profile image
TeddiJ in reply toeglimark

Interesting to know-thanks. I have no choice but to take more overnight, as I can't sleep and currently have nothing else that works.

eglimark profile image
eglimark in reply toTeddiJ

First I've heard of Delta 8, was just reading about it online

TeddiJ profile image
TeddiJ in reply toeglimark

Yes-do a search on here and you will see how it is working for some. They now have Deltas 9 and 10, too, but haven't seen anyone post on those.

SueJohnson profile image
SueJohnson in reply toeglimark

Have you had your ferritin checked?

eglimark profile image
eglimark in reply toSueJohnson

Yes, I had a broad spectrum of blood testing done through a holistic practioner. My RLS started when I stopped amitriptyline.

SueJohnson profile image
SueJohnson in reply toeglimark

What was your ferritin?

RLSofManyYears profile image
RLSofManyYears

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.

BeachGolfer profile image
BeachGolfer

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.

Rosyrestless1 profile image
Rosyrestless1

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.

grassgree profile image
grassgree

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.

calschwartz27 profile image
calschwartz27

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

Bks429 profile image
Bks429 in reply tocalschwartz27

How do you achieve a ferritin greater than 100? Is your doctor a neurologist?

calschwartz27 profile image
calschwartz27 in reply toBks429

See below

SueJohnson profile image
SueJohnson in reply tocalschwartz27

I assume you know to take it in divided doses of 600 mg 2 hours apart?

SueJohnson profile image
SueJohnson in reply tocalschwartz27

Trazodone is also safe for RLS.

DataRN profile image
DataRN in reply tocalschwartz27

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?

Bks429 profile image
Bks429 in reply toDataRN

I live in Connecticut. My doctor is an RLS specialist. That is exactly what he said. It’s the combination of all the numbers.

SueJohnson profile image
SueJohnson in reply toBks429

See my reply to DataRn.

calschwartz27 profile image
calschwartz27 in reply toDataRN

Honestly I’m not sure - I have An appointment next week so will ask him to explain

DataRN profile image
DataRN in reply tocalschwartz27

Good luck at your appointment. Explanation would be amazingly helpful! Thank you

SueJohnson profile image
SueJohnson in reply tocalschwartz27

See my reply to DataRn.

SueJohnson profile image
SueJohnson in reply toDataRN

Most doctors are not uptodate on RLS. Improving your ferritin to 100 or more helps 60% of people with RLS. See sciencedirect.com/science/a...

DataRN profile image
DataRN in reply toSueJohnson

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.

SueJohnson profile image
SueJohnson in reply toDataRN

Who is your doctor?

DataRN profile image
DataRN in reply toSueJohnson

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. 😊

SueJohnson profile image
SueJohnson in reply toDataRN

He is also one of the authors of the Mayo Clinic Updated Algorithm on RLS. You are lucky indeed ! But I am surprised he doesn't have you taking iron.

DataRN profile image
DataRN in reply toSueJohnson

Trust me…I ask him about it every visit too. This week I will make sure to get a better understanding to share.

SueJohnson profile image
SueJohnson in reply toDataRN

I will be very interested to hear what he says.

calschwartz27 profile image
calschwartz27

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.

Tobytime18 profile image
Tobytime18

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.

SueJohnson profile image
SueJohnson in reply toTobytime18

What has he tried?

Tobytime18 profile image
Tobytime18 in reply toSueJohnson

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.

SueJohnson profile image
SueJohnson in reply toTobytime18

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.

K2D2 profile image
K2D2

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.

sylvanwanderer profile image
sylvanwanderer

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!

DataRN profile image
DataRN

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.

Bks429 profile image
Bks429 in reply toDataRN

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.

DataRN profile image
DataRN in reply toBks429

Methadone may be worthwhile for you. 🤞

SueJohnson profile image
SueJohnson in reply toBks429

How long have you been on gabapentin?

Pepper2012 profile image
Pepper2012

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!

Spider24Sports profile image
Spider24Sports

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.

SueJohnson profile image
SueJohnson in reply toSpider24Sports

Trazodone is a safe antidepressant for RLS.

Merster profile image
Merster

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

serengazer profile image
serengazer

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

Teresa

Bks429 profile image
Bks429 in reply toserengazer

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?

serengazer profile image
serengazer

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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