Hi, Im new to the forum hoping to get some ideas and advice. I’m was dx severe rls and periodic limb movement disorder last year by a Neurologist after having years of no sleep and restlessness. I tried pregabalin, gabapentin and clonazipine amongst other medications. I have now ended up on pramipexole it worked a treat at first but within 9 months I have gone up to 5 x 0.88 tablets at night and it’s not working! I see the Neurologist again on Friday and wondering what else I could try. I’m worried now I may have augmentation and terrible time coming off them. 😓
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Where are you Delilah & which neurologist are you seeing?Yes, it sounds like augmentation.
Here is the RLS-UK website with info on augmentation and a detailed withdrawal schedule under 'useful resources'.
There's also an iron therapy sheet.
Do NOT let the neurologist switch you to another dopamine agonist. Most neurologists mistakenly believe the Rotigitone patch doesn't cause augmentation - it does! So you will need to ask for iron therapy and/or a low dose opioid.
rls-uk.org/augmentation-reb...
Aww thank you so much for replying, I’m in the UK under the Walton centre. My husband took a video of me the other night flailing about legs arms head for 5 hours I was like that before the pramipexole. My G.P said my movements are deficient impacting my fibromyalgia too! It’s affecting my whole life, looks like I’m might be redeployed in my job as I can’t do nights at all. I’m going to show the video to the Neurologist on Friday. At my last appointment he said levodopa or codedine were the next options.
Levodopa is worse. It is not a DA per say but acts like one and leads to augmentation even faster. Codeine will help you come off the pramipexole.
Another one is Dr Johnathan Partridge , a neurologist at Stoke who is informed about RLS and willing to listen and learn so if you showed him the Mayo Algorithm which is the bible for treating RLS he wouldn't dismiss it.
You need a new doctor since it is obvious yours does not know much about RLS or would never have prescribed pramipexole or considered prescribing levodopa next. I would suggest Dr Christopher Murphy a Consultant Neurologist at Salford Royal Hospital (based out of Cheadle near Manchester). He is well up on RLS. However appointments take a long time so you would have to pay to see him privately. However he might want to prescribe the Neupro patch so you have to be firm and tell him you don't want it.
Thank you I will have a look at the Dr you suggested. Have been under his care yourself?
No - I am in the US.
This is a hard thing to do Sue. If we treat the Mayo Algorithm as the bible for treating RLS we must accept that it still refers to using dopamine agonists as the 2nd option if alpha-delta calcium channel ligands are contra indicated or ineffective. This is stated in box 1. - the highlighted road map to the algorithm. It seems that the experts still think there is a place for DA's BEFORE switching to opioids. This is highlighted again in Box 7. - highlighting the path to follow for chronic persistent RLS. If it is the bible for RLS patients it seems odd to pick and chose the path to follow and ignore the written advice detailed within it. This is a major area of confusion amongst patients and neurologists.
Unfortunately they did say in Box 1 to use DAs when Alpha2-delta ligands are ineffective But when they elaborated in Box 7 they did not say that. It says "Factors favoring a dopamine agonist as initial treatment include obesity and its complications, past or present moderate or severe depression, gait instability, disorders causing respiratory failure, and previous history of substance use disorder. Alpha2-delta ligands can worsen these conditions."
However they are correct that opioids should not be used for the conditions stated in Box 7.
Thanks very much Sue. I really want to understand this process. I think that box 7 is poorly written - well for me anyway because it is confusing. It states that if a preparation such as Pregabalin is ineffective for chronic RLS (i.e. RLS requiring daily treatment) then swap to a DA like the Rotigotine patch. It does not mention Opioids at all here but they are mentioned in the following pages if you have refractory RLS - i.e. RLS that is unresponsive to iron infusions, Alpha2's and DA's - to me that means that we should use opioids as a last resort only - that is after you have tried other monotherepies including DA's.
I don't see " if a preparation such as Pregabalin is ineffective for chronic RLS (i.e. RLS requiring daily treatment) then swap to a DA like the Rotigotine patch. " and I did a search for it using "swap to a DA" and also "Pregabalin is ineffective".
So sorry, I had paraphrased - the actual words are: Box 7 Management of Chronic Persistent RLS: "If Alpha 2 delta ligands are ineffective or poorly tolerated, change to a dopamine agonist" (I swapped Alpha 2 ligands to read Pregabalin which is the alpha 2 ligand I take). The text prior to the page containing box 7 refers to Chronic RLS being RLS requiring daily treatment.
The text on the same page as box 7 reads "When DA's are used (Table 2) non ergot agents should be prescribed ... Table 2 refers to Pramipexole, Ropinerole and the Rotigotine Patch.
The thing I find most confusing is that the Mayo Clinic algorithm itself suggests that we should still use DA's as second line treatment (as long as all the general advice concerning the side effects are discussed) until they are no longer effective - but on this forum they are an absolute no-no. The report states that Augmentation frequency for the rotigotine patch is 36% after 5 years and that this is dose dependent - The dosage is 1-3mg - so if you take only 1mg I presume the augmentation rate is lower.
I see Guy Leschziner, prof of neurology and sleep medicine at Guys and St. Thomas' in London - he seems to be completely up to date with the Mayo report and quotes these findings himself. This makes it difficult to reject DA's doesn't it?
OK I see it now - but they do emphasize opioids throughout. So use Dr Berkowski's blogs and videos instead for Guy Leschziner
Of course it would be very rare for them to be ineffective taken in the correct amounts for at least a month unless their dopamine receptors were damaged by taking DAs. They can not be tolerated because of side effects but that is a different story.
Sue…..could you please recommend a good RLS doctor in Chicago/western suburbs? Need someone with extensive knowledge willing to get to the bottom of this.
Dr Mari Viola-Saltzman - North Shore University Chicago, Illinois
Thank you so much. I don’t see any reference to RLS on her profile.
She has very high experience in treating RLS
Gabapentin or pregabalin will also help your fibromyalgia.
The Walton Centre in Liverpool is backward!Sorry, but ANY UK neurologist who suggests Levodopa should be struck off.
Neurologists are not taught anything about RLS in the UK, hence the appalling advice you've received so far.
I agree that you should cancel next appointment and arrange to see Dr Chris Murphy in.Salford.
At least he knows about iron infusions and Buprenorphine.
Dopamine Agonists ALL cause severe drug-induced worsening and Levodopa is the worst of them.all.
Please, Please please do your own research.
I'm not exaggerating when I say UK neurologists know nothing about augmentation and the very, very high rates of Augmentation and Impulse Control Disorder.
Only Dr Murphy, Dr Robin Fackrell and Professor Matthew Walker in England and Dr Jose Thomas in.Cardiff are up to date.
Did your doctors take full panel iron tests? How did they prescribe gabapentin? For RLS, it should ONLY be prescribed at night in split doses of 600mg, 2 hours apart. Otherwise, you won't get any benefit. And average dose is 1200mg- 1500mg.
So, see Dr Chris Murphy.
Refuse Leevodopa, Ropinirole or Rotigitone.
Your next med should be Buprenorphine if raising serumferritin above 200ųg doesn't help.
Have you seen the dr in Salford yourself?
It was a full iron panel I had I have them every 3 months.
I was prescribed gabapentin as 300mg in the morning and 300 mg at night if my memory serves me. Think they thought it would also help my fibromyalgia too!
Maybe I should give it another go.
No I haven't seen Dr Chris Murphy myself, but several members on here have seen him recently after their GPs refused to prescribe opioids after they had suffered augmentation on Pramipexole and gabapentinoids failed.If you have fibromyalgia as well as RLS, gabapentin would help both and you could take during the day to help fibro pain. But 600mg is a starting dose. It won't do much for either fibro pain or RLS. And gabapentin takes 3 weeks at full dose to be effective. Most doctors and RLS patients think it will work instantly and that is not the case.
The average dose and timings are all set out in the Mayo Clinic Algorithm and RLS-UK website.
On the gabapentin since you have fibromyalgia you can take up to the amount I recommended at night and still take additional during the day as the maximum amount is 3600 mg.
Thanks Sue, that could be worth another go then. As my fibromyalgia pain is definitely aggravated my my movements.
Within the link for RLS-UK the NHS section mentions treatment that includes dopamine agonists , premipexole etc. Why is this the case??
This is because the NHS and in fact the UK medical teaching profession refuse to consider best practice advice from the USA as well as overwhelming evidence in USA and UK that dopamine agonists will eventually lead to worsening in symptoms for many people with the potential for a very distressing withdrawal and the possibility that their dopamine receptors are damaged and other medications may fail to work. It’s extremely frustrating and very difficult for patients who need treatments such as pregabalin or opioids like buprenorphine to have these prescribed correctly. Some members of the forum are fortunate enough to have found medical professionals who can help but they are few and far between and often it involves a difficult personal struggle and incredible persistence to achieve.
Can you add the actual link you are referring to?RLS-UK website now makes it clear that dopamine agonists should not be prescribed.
Ah, I see what you mean. If you click on the link for NHS on the RLS-UK website, it takes you to the appalling, outdated NHS information.I was asked to complete a survey when I googled NHS and RLS.
I gave detailed replies as to why there site is dangerous and outdated.
We should all try to fill out the survey and tell them that Impulse Control Disorder is NOT rare, as they state. There are thousands in the UK affected by ICD when taking dopamine agonists for RLS.
As Munroist says, NHS refuse to update their knowledge to reflect best treatment as per Mayo and the American Academy of Sleep.
Thats the one.
I'm sure something will be added to let people know that RLS-UK follows Mayo & DAs are no longer 1st line treatment. 👍
They did recognise in a Jan 24 update that they have concerns regarding augmentation. That's a start.
I have just done the NHS survey.
Welcome to the forum. You will find lots of help, support and understanding here.
You are suffering from augmentation on pramipexole and need to come off it as it will only get worse. You are taking more than the maximum amount of pramipexole. which is 4 tablets. I assume you meant .088 mg.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
You said you tried gabapentin and pregabalin but you may not have taken enough or for long enough so check what I say in the following. If you did there are other options.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, 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, C, 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.
By the way it would really help us to help you if you would indicate on your profile where you live.
Thank you for your very informative reply. I was on the doses of gabapentin and pregabalin you say are the starting doses. I didn’t feel it helped at all could not keep still and having symptoms as early as 2 in the afternoon. In fairness my G.P has had me on iron for ages as I’m peri menopausal with heavy bleeding and I also have coeliac disease. The Neurologist stressed to G.P my ferritin needs to be higher end or normal. It’s taken months to get it from 15 to 62 they’ve said they can’t get it much higher as it will send my iron too high which then causes other problems.
The starting doses don't help much which is why you couldn't sit still.
What other problems would the iron cause?
symptoms & Causes of Hemochromatosis too much iron
feeling tired or weak.
pain in the joints, particularly in the knees and hands.
loss of interest in sex or erectile dysfunction.
pain in the abdomen over the liver.
darkening of skin color, which may appear gray, metallic, or bronze.
That’s what too much iron can do and you end up having to have blood removed like when you donate it to the blood bank. So dr reluctant to keep pushing the iron tablets, I’ve got print off of last months iron bloods so will take to my Neurologist on Friday. 😊
You don't need to worry about Hemochromatosis unless your transferrin saturation percentage (TSAT) is about 45%. Do you know what yours is? If not look at your printout. If it is not there then your didn't have a full panel iron test. If it is report back here.
If not ask for one as I advised above.
Hi, Thanks for your reply, I’ve just looked and it says 11.4 % serum transferrin? 🤷♀️
I’m pooing a brick now about coming off this pramipexole! 😩
Then you need iron and an iron infusion even more as they advise it if the serum transferrin is under 20%. Your doctor is unbelievable.
While you are waiting to get an iron infusion, if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day 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 your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. You can also get one privately by paying for it, but it costs around £800.
It's no fun but the codeine will definitely help and you can probably get one of the 2 doctors I recommended to prescribe a stronger opioid temporarily to help you come off it. Codeine is a weak one.
Nonsense! See a haematologist..RLS patients need serum ferritin above 200ųg ideally.You should take ferrous bisglycinate every other night until you see Dr Chris Murphy and because of your coeliac disease and poor gut absorption, he will probably arrange an iv iron infusion. 60% of RLS patients see dramatic improvement after an infusion.
The Neurologist will likely advise on the iron as he does write to the drs telling them it needs to go higher. Maybe he’ll suggest an infusion himself. I can’t carry on the way I am 😓
Sadly, until you get off Pramipexole, your RLS will continue to be very severe. Pramipexole feeds the disease, making it more severe and causing it to move to other body parts. You can start following the RLS UK withdrawal schedule now. Reduce by half a 0.088 pill every 2 weeks.
Ask GP for 30mg codeine to reduce severity of withdrawal symptoms.
Hopefully you will see Dr Murphy asap and he will help you get through withdrawal.
It’s still my legs right arm and head that are affected with the movements. Those movements were there when I started the pramipexole and also face grimaces. Had anyone had those? I will definitely heed your advice and get off the pramipexole. I will refuse all other medication that is on par with it and will ask about the codedine for sure. I’ve just been looking at Dr Murphy he’s about an hour and a half from me so not too bad at all. 😊
Go slowly. Excellent website is relacshealth.com/
And watch Dr Berkowski talk about dopamine agonists on YouTube. He's a top world expert.
Thank you I will be sure to look at that. 😊
Delilah, I can relate to the face grimaces. Had them early on in my RLS history, over 20 years ago. Don't give up. The good people here will not give up on you.
An thanks, good to know I’m not the only one with the face thing 🤪
Everyone is different, but iron supplements raised my iron levels while actually lowering my transferrin levels, which resulted in my saturation % increasing to almost 60%. While ferritin rose to a better level, the saturation % led to my doctor telling me to stop the iron supplements. Delilah doesn’t mention saturation, but this might be her doctor’s concern?
Possibly, but here in the UK, doctors are so far behind on iron therapy that they still think iron infusions are very lethal. That was the case with the older formulations in the 60s & 70s.And as they're so behind on RLS treatment, I'll bet they are unaware of the statistics re the newer formulations.
Her percentage saturation is low. Hopefully Chris Murphy will arrange iron infusion.
Here's the RLS-UK leaflet on withdrawal from Pramipexole and iron therapy. Maybe print them.off and drop in at the Walton Centre. It might update their knowledge on RLS.rls-uk.org/useful-resources
Oh great thank you I will print them off for Friday. Thank you so much ☺️
You might print off the Mayo Clinic one too.
Pramipexole should never be increased and your Dr. needs to be set straight on that. You should probably go on an opioid. My GP said I could increase my Pramipexole but I did my own research, and my new RLS Dr. was happy that I didn't increase as he said the withdrawals would have been horrible. I'm still on it but I never increase it and if it stop working I stop and go on Tramadol at about 150mg, plus I use tramadol 50mg Tramadol about half the time with the Pramipexol if my legs are hurting. I also have what they call fibromyalgia.
The dr only increased it as per Neurologist guidelines so she was just doing what she thought was right. I was desperate for help and some relief. I should’ve have done more recently myself. My own fault just need to get off it. You live and learn.
As you are in the UK, are you aware of the RLS charity which has lots of information too. They are the people who pinpointed me to this forum which has been invaluable to me when I was having bad episodes last year. Also they have an AGM in October which you can attend in person in London or online for those that can't get there. 2 speakers this year and one topic is iron infusions which may be of interest to you. Have a look and contact debbie who is the secretary .
Hi, I have just become a member of the rls charity. So thank you 🤩
Also regarding your apprehension of withdrawal from pramipixole. I was in the same position last year but withdrew over a 10 day period with no more problems than what I was already having with my RLS. Everyone is different so it doesn't mean it will definitely be worse.
Gabapentin and pregabalin didn't work for me but codeine does. My iron levels were in a mess due to being anaemic most of last year (peri-menopausal like yourself) until I had a hysterectomy. Since then everything has calmed down and although not disappeared, my RLS is like it was before (I've had it since my 20's). Again everyone is different so it's a case of trying everything suggested.
Good luck with it all and hope you get sorted.
Thank you for replying. Oh that’s made me feel much better!
I know if got to come off it so hopefully it won’t be so bad.
Ah it’s awful isn’t it all the bleeding with perimenopause and low iron. It’s taken months to get mine up to where it is now.
If he offers codedine tomorrow I will accept it.
Good luck to you too 😊
I have just see Dr Chris Murphy end of July, lovely guy, he look at my iron and said it was ok, he advised me the only licensed treatment for RLS are dopamine agonist. I really did not want to hear that as I'm on Ropinirole and I,'m in augmentation, he did then go on to say next line of meds are gabapentin & Pregabalin then Opiates. If you see him just be firm and say no to the dopamine. Good luck x
Hi, Thanks for your reply, well he sounds like he’s saying pretty much what my Neurologist said at my last appointment. I’m seeing him again tomorrow. I will ask to off pramipexole and see about codedine which he said would probably be next line treatment, will also take latest iron profile with me.
Thank you and good luck to you too 😊
Having read your post it I see you say that you were getting RLS in arms and upper body and during the day as well as at night *before* pramipexole. That is unusual and is normally the result of taking a dopamine agonist like pramipexole for too long at too high a dose and augmenting. Normally RLS is mainly in the legs and at night/late evening although there are always variations either way. That coupled with the fact that after 9 months you've had to increase the pramipexole dose and it's still not working seems to indicate your RLS is quite strong. It makes me wonder whether there are other triggers such as foods, or anti depression meds like SSRIs as Desert Oasis mentions? Sue also lists other common triggers to check.
The iron infusion does seem like a good first step as you say you have iron problems and it's not additional medication with side effects although there is always some care required but a good haematologist will make sure it's done safely and check for any existing red flags. As Sue has said your gabapentin dose was quite small so it's possible that higher doses will help if you decide to try that again. For now the most important thing is to reduce the pramipexole gradually to try to get off that. As you have been on it for just 9 months that might be easier but it's almost impossible to predict. All the best
Hello and thank you for replying. Yes it affects my legs arms head and face! It’s been awful 😣 tbh. I also have periodic limb movement disorder.
I don’t take any antidepressants only pramipexole, iron, folate hrt and supplements. I had 3 hours sleep last night and woke up moving and could keep still so got up a 7! I’m shattered.
I will tell Neurologist tomorrow that I’m coming off pramipexole and see if he can offer any other help that isn’t a dopamine agonist.
Maybe I should try the better dose gabapentin?? I’m at a loss as to what to do atm. 🤷♀️
HRT can make RLS symptoms much worse than they have to be.
What supplements are you taking? Some can make RLS worse.
I take, iron, folate, adcal, multivitamin and omega 3.
Those are fine.
Great. I saw the neurologist this morning. He said I’m in augmentation and need to come off the pramipexole asap. He mentioned an iron infusion. When he saw my video he said he’s going to get advice from his colleagues who specialise in rls and plmd and get advice as he’s unsure what to do with me now. He doesn’t want to prescribe codeine because of my migraines. I’ll just have to wait and see now.
That's good that he is aware of augmentation. Just be sure to come off it slowly as I advised. Also good that he has a colleagues that specialize in RLS and he is going to get you an iron infusion. Sorry about the migraines and codeine though.
He said he will ask colleagues about the iron infusion too. St least he was honest. There is a possibility I can see his colleague privately so I’ll see what he says and use that as an option if needs be. Thank you for your advice ☺️
It's difficult but you just have to start somewhere and see what happens. Some people find their symptoms subside a lot after coming off DAs, but not all. Larger gabapentin doses may help and the normal top end is 1800mg a day (taken in 600mg chunks for effectiveness) and it works for some people e.g. Sue, but not all and there's the possibility of side effects, but again until you've tried it it you won't know. Note that gabapentin won't be a lot of help until you are off the pramipexole properly and maybe several weeks afterwards so you have to be patient.
Coming off gabapentin is not problematic although still best to do carefully so it's something you can try and if it doesn't work then you are no worse off. Same with iron infusions.
And then you need to give things time .. my RLS has been OK for a week but last night was rubbish, up 4 times and most sleeps were about 30 minutes max and I have no idea why but experience is it will go back to fewer wakes and longer sleeps, so I won't panic. Deep breath.
TRAMADOL has been a Godsend for me and many others. I’ve suffered since childhood but with tramadol; the suffering disappears!!
Do you take allergy meds at anytime? Major aggravating drug. Also, please check any food or drinks for aspartame or even sucrolose. Major triggers. I used to drink Powerade (aspartame) and I would have horrid nights and days. Arms and legs.
I recall having 2 full days of the most horrific symptoms and was in bed most of the time.
I was scouring the internet for anything that would help me. I stumbled upon tramadol in a forum and crawled to my medicine cabinet. Found an old bottle of tramadol (never worked for regular pain from an injury) and I took 100 mg. Within an hour all symptoms were gone and I my energy returned!
It was nothing short of a miracle. I wish you all the best.
Hi Delilah, it sounds like you are on HRT? These will make the symptoms of RLS much much worse. Did the doctor prescribe anything for the PTSD? If you’re perimenopause, I’m also going to assume you’re young. Too young to have had severe RLS for many years. Tramadol or Codeine should provide good relief until (and if) you get a RLS friendly med schedule in place that excludes HRT.
I’ve never taken SSRIs, but when I was stupidly taking melatonin (which also raises serotonin and provokes RLS), I discovered that 28 to 56mg of ferrous bisglycinate (should really be this form of iron, not sulfate), taken on an empty stomach, before bed, would completely relieve my RLS in 1 to 1.5 hours, for one night. That was 14 years ago and I maintain this same regimen. Many, many people on here find relief with this protocol. It should work that very first night (for a long and complicated reason).
If the ferrous bisglycinate doesn’t provide a decent amount relief, that very first night, then feel free to follow other people’s advice on here regarding iron. Unless I was anemic, due to a chronic disease, I personally would never go for an infusion. That’s me.
Here are two other members of the Ironman Club:
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
Hi, Thank you for replying. I’m 52 and have had restless legs since my 20’s but it’s really ramped up in the last 5 years. I took venlafaxine for ptsd but it was awful then had nasty withdrawal from it!
I take ferrous fumorate for my iron 2 tablets per day! I’m going to discuss all the new information I have with the Neurologist tomorrow morning. ☺️
I just noticed in my notes that for individuals with celiac disease, non-heme iron like ferrous fumarate can be more challenging to absorb due to the damage celiac disease causes to the small intestine. This damage impairs the body’s ability to absorb nutrients, including iron. All the more reason for you to get an iron infusion.
So if you are going to take iron heme iron is best. The highest amount I see in a capsule is 20 mg so you would need at least 3 of them. But that would still be better than the ferrous fumarate you are taking. You can get them on Amazon and make sure they do contain 20 mg.
Ah thanks Sue that’s so kind of you. There’s a possibility I will be having an infusion the neurologist is going to speak to his colleagues that specialise in rls and plmd and hopefully come up with a plan. In the meantime I’m going to wean off the pramipexole.
Hi Delilah,
I used to flail about at night while I was on Pramipexole, but its better now I'm on Gabapentin. Occasionally if the RLS comes back I take Co-codamol which has codeine in it, and the symptoms vanish like magic. Works for me. Jim
Hi Jim, Thanks for your reply.
I’ve tried gabapentin and pregabalin they didn’t help. I might try a co-codamol. Neurologist wouldn’t give me codedine because I have migraines! 😣fingers crossed they come up with a plan for me soon.
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