Hi all. Haven't posted for a while. I’ll update you on my RLS journey and ask for advice on the above.
Last time I posted I was going through a rough patch with my long standing insomnia where getting 4-5 hours nightly for years was ok, then went to having 0-1 hours and maybe 6hours after being awake for 48hours. (which did improve dramatically with trazodone) and now back to square one, 4-5hours nightly. My RLS was pretty much under control on the occasional tramadol. However started creeping back.
after the dreaded Ropinorole / augmentation and even round 2 with pregabalin not working. I was taking the ‘less medication to manage your RLS, the better ‘ approach, given my age. In addition to Nightly fast, iron every other night, decreasing sugar intake, vitamin D3 and K2. Detoxing my body off all the pills including Antidepressants and letting my receptors repair, taking the occasional tramadol 50mg in the evening when my legs started to niggle. I was at a stage where daytime symptoms had vanished. And nightly symptoms were becoming less frequent down to once/twice a week. However now in hindsight, I do think I underestimated the impact on my mental health (depression /insomnia) from coming off all antidepressants to improve my RLS.
As my insomnia worsened, which wasn’t helped by the immense life stresses / heightened depression, Overtime I completely messed up my regime. Not taking my vitamins consistently including iron, breaking my nightly fasts (sorry, but being let’s face it, it’s damn hard, especially when your awake). And you guessed it the monster niggles started to make an appearance More frequently. I then found myself taking tramadol every night. Which worked to stop my legs going off one, but this was worsening my already worse insomnia. And now making me feel sick and actually being sick.
The neurologist advised previously for me not to start the trazodone. However I did on occasions at 50mg when it was prescribed not with that much good result. After a few weeks, Seeing as I already messed up my regime completely, I thought to get the 50mg tablet, half it, and then half it again. Taking 12.5mg trazodone. As advised by someone previously on this forum. The results, I felt the sedation within 30mins, my eyes heavy, like I’ve just smoked some cannabis. I had 8 hours sleep. Wow it was a miracle. I was still feeling sick and being sick with the tramadol but it was becoming less frequent.
I continued a regime of taking the trazodone every other night and on the night of not taking it I still managed to doze off and have 6-8hours. God it was amazing. And I found this did not contribute to making RLS worse. But I was now taking tramadol 50mg every night to manage the RLS because of my regime failure, and the sickness was still making an appearance. So was thinking to wean myself off the tramadol and going back to the occasional and seeing how things went. However after 2 weeks of taking the trazodone, I found every other night I was taking the trazodone, I was having difficulty breathing. My Consultant psychiatrist told me cease taking the drug immediately.
Back to square one. 4-5 hours a night. At least I got over the 0-1 hours sleep a night, because that was absolute torture Honestly. RLS still under control after nightly 50mg Tramadol. I also decided to push myself mentally and get back into my regime which I have continued for last few weeks and thinking now to wean myself off the tramadol back to the occasional as it’s still making me sick being on it daily. And even increase the iron to nightly rather then every other night when weaning off the tramadol. Thoughts?
The recent appointment with the neurologist. Advised tramadol is keeping RLS at bay at 50mg nightly but worsening insomnia nausea/vomiting. He suggest to start taking morphine sulphate (MST) 5mg prolonged release nightly to start. Should I? As this guy told me he doesn’t follow anything written by the mayo clinic, and point black refused to look at the updated algorithm. Who also refused measuring my ferritin previously as this wasn’t considered part of RLS treatment for him. My recent ferritin level is 120.
Thank you in advance for reading. Thank you
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Freegaza786
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Hi freegaza786 I was on morphine for many years in all its form(pills and liquid) it does seem to help you feel sleepy and yes it helps mask rls, but you will end up wanting more and more as it no longer works as well and you can very easily get dependent on it. Coming off of morphine can require rehabilitation followed by intense depression and other lasting effect on the mind and body. Morphine is brilliant short term for injury or short term pain relief.
I wish I never ever was offered morphine I've been off it 2 and a half years now and I'm still trying to put my life back together.
I don't want to be a downer about it but doctors don't tell you how it can be.
Rls is distressing and I am barely hanging on with it but I will never take morphine for it ever.
Hi Freegaza, I cannot advise you whether or not to take the morphine. It is a drug which is very easy to become hooked on. Whilst it is sedating and has helped you to get some sleep I would be worried about the long term treatment, especially as I see you are young. One thing about morphine is that it suppresses your immune system which makes you more liable to infections. This fact alone would put me off.
I am on buprenorphine patches for my RLS and back pain. The only drawback with the patches is they are supposed to last 7 days but really begin to wear off after day 5. I would really like to try the tablet form - Temgesic - but my GP will not agree with this.
However, if your RLS requires opioid treatment I would suggest perhaps buprenorphine for you. It does not mess up your brain as much as some of the other opioids. I suffer from depression and anxiety as well and cannot take any drug for this because of my other medications but I do CBT which gives you a better way of dealing with your stresses. I hope you can get sorted.
I cannot speak to the morphine issue, but it seems clear that the tramodol is not working for you, particularly if it is causes insomnia and nausea. I have used trazodone on and off for many years, currently taking 25 mg, but took 100mg for extended periods. Definitely can knock you out. I'm looking at trying methadone next, as the gabapentioids don't work for me. I feel bad for you because you are still young and it's unfortunate that you have to depend on opioids to feel like you have a life.
Wellbutrin is a great antidepressant. Ask your doctor for it. You mention pregabalin didn't work for you. How much were you on? Many people give up on it and think it is not working because they don't take enough. The Mayo Clinic Algorithm that you are familiar with says "most RLS patients require 1200 to 1800 mg of gabapentin daily." This translates to 200 mg to 300 mg of pregabalin, and the maximum dose is 450 mg. For sleep have you thought about taking a benzodiazepine? However don't take clonazepam because it has a half-life of 40 hours and cause daytime sleepiness. Xanax is a better one with a half-life of 11 hours or Lorazepam.
Thank you all for your replies and sorry for the delay in replying..
Bstars your not putting a downer or anything, your being realistic. And it’s positive hearing how you feel about morphine as I’ve had the same doubts. Thank you.
Jelbea thank you for your advice. After hearing so much positive feedback about buprenorphine, I anticipated the neurologist might recommend that but he didn’t. I took a lot of medication for my anxiety and depression, at the highest point in 2020 I was on Venaflaxine 150mg, Mitazipine 45mg, pregablin 450mg, lorazepam 2mg, propranolol 50mg. All at the same time. Made my anxiety and depression a lot worse. I have now come off all of them. Had CBT twice and been currently having EMDR for nearly a year. Thank you for your reply. Appreciated.
Fatniss what you said “I feel bad for you because you are still young and it's unfortunate that you have to depend on opioids to feel like you have a life.” this is the sad reality, having to rely on these drugs at such a young age, what the hell am I going to do as I get older. That worry’s me.
Thank you for your reply.
SueJohnson I can’t say anybody has ever recommended Wellbutrin, not even my consultant psychiatrist. In regards to pregablin I was on 450mg for over two years not related to RLS. When started it again for RLS, initially it helped but dose increases were actually worsening my symptoms. In regards to benzodiazepines, I had adverse reaction to lorazepam in Jan 2020. And even then it wasn’t atall helping with the insomnia.
Thank you everyone for your replies. After having a few moments to look back at my journey it’s clear to me that I was almost symptom free at the beginning of this year. Following my regime of nightly fast, iron other vitamins and avoiding triggers, it nearly got me to where I wanted to be. Controlling my RLS with no medication but the occasion tramadol, and even that was becoming less frequent.
Messing up my regime, especially not taking the iron consistently was the cause of my symptoms returning. It’s shame I couldn’t tolerate them and reached back for the medication instead of re stating the regime and seeing it through.
I guess in a sense I have prolonged my suffering. Nobody to blame but myself.
I definitely not going to take the Morphine Sulphate (MST) as it will help initially but prolong my suffering.
I’m going to wean myself off the tramadol and hopefully I can be almost symptom free like earlier this year.
Life stresses / insomnia/ depression/ have also had a negative impact on my motivation to see my approach through. I’ve been weak I guess.
Apologies for tagging the above in this post. I guess I want some reassurance I am doing the right thing and maybe everyone else’s take on this situation.
I'm so sorry the trazodone caused breathing issues. That's so disappointing. Wellbutrin isn't available in the UK.Have you considered medical cannabis? I used if first when going through Ropinirole withdrawal and it was the only thing that gave me sleep.
I used Project-twenty21 and the Medical Cannabis Clinic. I use Althea Champlain oil with 20% THC and take it about an hour before bed. It knocks me out and I think it would help you.
I also think you're someone who would respond to an iron infusion - several hospitals in the UK have now given them to RLS patients so write to the nearest teaching hospital, haematology department and ask if they'd consider it. Many with RLS don't see improvement until serum ferritin is above 300.
That's likely the case with me. I had tremendous relief when my ferretin was 339. Now at 225, I struggle like anything. But I also think it has something to do with serum iron and TSAT. Both of which have dropped for me in the last couple of months and my RLS has worsened 5 times in these last months.
Thank you for replying like always. Taking trazodone at such a low dose 12.5mg, I was confident there would be very little chance of having any side effects, if at all. Nothing has helped with the insomnia quite like it, the eyes gauging quite literally closing shut. I’m absolutely gutted. Does UK have an alternative for Wellbutrin?
I did consider medical cannabis, but never for insomnia only for RLS. Would it be the same if I bought it off the street and smoked it ? Project twenty 21, is something I have looked into previously but not gave it much attention. I think it’s certainly an avenue to go down now. Definitely.
I did have an iron infusion around July 2021 (last year), and found it didn’t offer any relief. But then my iron stores were already low. Iron 7 approx, ferritin 67, and TSAT 10%. After infusion iron was 29 approx and TSAT 50% ferritin wasn’t measured as neurologist didn’t consider it relevant. Recent ferritin has been 120. Maybe I needed to have another iron infusion. I have heard a lot about getting the ferritin above 200, but nobody in my care circle is willing to listen that this is consideration for RLS. I feel like talking to a brick wall when bringing ferritin and RLS in conversation to any healthcare professionals, especially the sleep doctor.
After infusion, your iron only reached 29 ? You must have had a really low dose of IV Infusion. I had Ferric Carboxymaltose 1000mg 2 years back. My iron is still 64.
Heatherlss i cannot recall what type or dose of iron infusion I had. I remember making a video and just went back to view it and see if I had captured anything but sadly no.
That just seems so wrong and so unhealthy. But that’s just my visceral reaction to that image. I highly doubt any of that iron will cross the blood brain barrier and the science seems to agree with me. ncbi.nlm.nih.gov/pmc/articl...
At least when you consume not very bioavailable iron you stand a chance of some of it being broken down into amino acids via digestion that then stands a chance of crossing the BBB. Once in the bloodstream there’s no digestion or breaking down of the iron as far as I know, however, the very last paragraph of the article suggests what has to be done to the infusion formulation in order for it to be helpful for RLS. For now, stick with oral iron.
These infusions, including Injectafer, were clearly not designed with RLS in mind. The intent was to get bodily stores of iron up. I was told that people who have a condition called Pica, that was brought on by iron deficiency anemia, are cured of their cravings for things like ice, clay and paper, the very day they get the infusion. Why isn’t our RLS better that first night or the first few days thereafter? Also, if our brains have trouble calling up iron from stores of say around 50, I dont understand why it should be any easier if your stores are 75 or 100 or 500. Guess what, the RLS experts can’t explain it either. I think I can. People with RLS generally claim relief somewhere between 6 weeks and 6 months after infusion. During this time they probably added or subtracted something from their RLS regimen, and I propose that is what is providing them with the new found relief, not the infusion.
I wonder if anyone ever got an infusion and found their RLS was worse? That would make more sense to me than better. That infusion is going to cause your hepcidin to sky rocket, probably including in your brain, where we with RLS supposedly already have too much. That elevated hepcidin from the infusion will make it that much harder for iron to get into our brains, at least for a few weeks I’m thinking? My understanding is if you’re truly anemic, or very very low on iron, then that anemia acts as almost a kill switch for the hepcidin. So if you’re anemic, you can even take iron three times a day and each subsequent dose will be absorbed as well as the first, whereas people with ferritin in the normal range, should put 24 hours between doses to maximize absorption by waiting until the extra hepcidin from the previous dose has mostly dissipated. It’s totally unnecessary to put 48 hours in-between doses as is suggested on here.
Stick with the nightly iron and fasting as you discussed did you the most good. And take a second or third capsule if you have to. It sounds like you’re having an allergic type reaction to the trazodone so yes even a small amount will trigger a reaction. It makes sense if you think about it. If a tiny dose can make you crazy sleepy then why can’t it constrict your airways somewhat as well???
Taking the smallest amount of mirtazapine (less than 1/4 if possible) should have the same sedating effect, only it stands a chance of provoking RLS symptoms even at tiny doses - if your RLS is easily provoked - whereas trazodone really doesn’t do this. It’s worth a shot. The iron might take care of any RLS symptoms provoked by the mirtazapine.
Touching on the IV iron infusion, it did worsen my symptoms the same night. And only settled down after 4 weeks if I remember rightly.
But at the same time I think I come off the venaflaxine (Effexor) around just over a month before (July 2021) which initially improved my RLS dramatically then after around 4 weeks starting creeping back. 2 weeks later I had the infusion and my legs went crazy again. Definitely Something in what you are saying.
In regards to the trazodone, yes it makes sense if it can make me sleepy at such low does then can also be prone to allergic reaction. I seem to be so sensitive to medication yet no health care professional has told me why till this day.
I was previously on mitazipine 45mg and it was making my legs go crazy but that was a high does. And when coming off that around a year before the venaflaxine (May 2020) initially my RLS settled for around 4 weeks but then came back. Looking back now, since then the insomnia has never really settled. And after being on mitazipine for around 2 years, the 6 months before coming off I wasn’t really sleeping. But no way things were as bad as they are now.
I think the only trigger left for me to tackle , for my RLS, is my insomnia. If I tackle that and stay on my reigme I will hopefully be RLS free for years to come. Without medication.
Am I right in thinking if I’m only having 2 -4 hours sleep, 6 days a week, instead of 6-8hours it is inevitable my RLS symptoms will appear no matter what I do, what regime I follow. Bad sleep hygiene will inevitably worsen most health condition, certainly doesn’t help I guess.
I didn’t have no breathing problems with mitazipine and taking 3.75mg of 15mg can’t hurt I suppose.
What hurts is that, I fought so hard coming off these medication and trying so many Avenues rather then medication. But In the bigger picture taking 3.75mg mitazipine would be way better odds if it resolved my insomnia and RLS (because I’m sleeping) then taking opioids to treat the RLS which then results in not sleeping anyway.
Thank you. I just always need a nudge to get my brain to follow someone kind of pathway.
Yes, sleeplessness may trigger symptoms in the short run almost like exercise and calorie restriction. Things that are annoying do just the opposite of the dopamine agonists. They antagonize our dopamine receptors and in the short run cut off that flow of dopamine but in the long run may up-regulate the receptors. We want you sleeping, period. Try a crumb of the mirtazapine. Taken day in day out it should calm you as well.
The UK doesn't have an alternative to wellbutrin. Street cannabis should work as long as you know it's not skunk or laced with anything else. You need a sedating strain.Cannabis is prescribed for insomnia -so do consider applying. Yes it costs money but I pay around £2 a day which is the same as some people spend on coffee and snacks each week.
Injectafer is the best infusion for RLS and we don't retain iron in our brains and most people who respond to infusions will need repeats every 8 months to a year.
Follow up and ask for another infusion. If they've given one before, they'll likely agree to another.
To be honest I don’t think getting it off the street would be wise anymore. What you mention about different strains. I don’t suppose I could ever be sure what strain it was / or if it was laced.
Project Twenty21 was looking at it more last night, and it’s not extortionate at all. It’s just the bad press around it. And now it is an offence driving with cannabis in your system. And I need my licence. But I also need sleep!
In regards to the Wellbutrin, I’m lucky to have a good, well I wouldn’t say good but a Consultant Psychiatrist who listens. Takes the info on board and doesn’t really have a problem prescribing anything I ask for (within reason ). I will suggest bupropion to her. Will this help with the insomnia?
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