So. I told the GP I had RLS. He asked me what my diet was like, what my job was and got me to stand on my toes and then touch my toes. He had no questions on symptoms/severity. He did book me in for bloods. I asked if he was including ferritin and Transferritin saturation but he just said yes I did iron so hopefully he has. I said about coming off Sertraline and he said to halve it but would not start me on anything else. I said although I was stable now winter was my worst time usually and maybe not the best time to be stopping meds. I have a long history of major depression and anxiety and have been sectioned under the mental health act several times. I asked if I could start something while coming off sertraline. He said he wouldn’t prescribe trazadone but said he might try mirtazapine or Venlefaxine later and in the meantime he told my husband if he was concerned about me he should call 999. I mentioned Venlefaxine is an SSRI but he just ignored me. I mentioned pregablin. I said I had been on it for anxiety so could try that but he ignored that too. He just seemed completely uninterested and wanted me out of the room.
appointment number 1: So. I told the GP... - Restless Legs Syn...
appointment number 1
That's terrible. You need a new doctor. I recommended Dr Giovanni Antonio Cocco. Please tell me that isn't who you saw.
No just a GP at my local surgery. Not met him before
The go see Dr Giovanni Antonio Cocco. He follows the Mayo Algorithm. And definitely won't ask you to touch your toes 😀Ridiculous!
It sounds like he was doing some basic neurological testing, asking OP to stand on / touch toes.
as far as I can see he only works in Dubai
If you are talking about Dr Giovanni Antonio Cocco the one I am talking about is in Bournemouth at the Mediclinic Parkview Hospital.
Thanks. Must have had the wrong one! Will see if I get anywhere with GP but good to know there is someone locally
I have seen Dr Cocco at Bournemouth and he told me he also works in Dubai - so it is the same man!
Wow! That is quite a commute for him.
I dearly hope you can find someone who can help. A good neurologist or sleep specialist.
Thanks. I have done a detailed e consult explaining why I don’t want mirtazapine (I am also bulimic and it is associated with food cravings) as well is it’s potential to worsen RLS symptoms. I have reminded them of my severe mental health history and requested trazadone again. Let’s see what happens.
Bless you that's disgraceful. Sadly that's very common in today's GP surgeries. My husband suffers this nightly, the doctors don't seem to understand how this affects your whole life. He is going to see Chris Murphy neurologist privately n hoping for positive result 🙏.Get a different understanding Dr. who will listen, value your time and provide some solutions/alternatives. You deserve so much more.
Until you get different anti depressants I hope you can stay positive, try to concentrate on the things you like to do and DON'T think about the coming months. I get how you feel this time of year, I'm heading into this too. Take care and be kind to yourself.
When he sees Dr Murphy, don't let him prescribe the Neupro (rotigotine) patch as he tends to. He will say it is less likely to lead to augmentation but that has been disproven.
Has your husband had his ferritin checked? If so, what was it? This is the first thing his doctor should have done. Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when he sees Dr. Murphy ask for a full iron panel. 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 his test in the morning before 9 am if possible. When he get the results, ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 100. If they are not, post them here and we can give you some advice.
What is he taking for his RLS now?
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If he is taking any I may be able to provide a safe alternative.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
He's currently on the rotigotine patch 1mg, but is augmenting. The GP prescribed 2mg but he is loathe to take it as he knows what will happen...He's tried different anti depressants then pramipexole and pregabalin most recently but augmented every time, he then increased the doses as per GP instructions but hey ho... relief initially then the augmentation. It's so true that there's not enough education around RLS and DAWS.
We're heading off to see Chris armed with the mayo algorithm, list of all medications he's tried n a print out of his bloods.
His ferritin is currently 72, I know it should ideally be over 100 but he struggles taking iron. When we discussed ferritin, transferrin saturation with the GP he said we were talking about stuff above his expertise n didn't know what augmentation was when we discussed it. We're hoping for a positive appt with Chris n will push for Buprenorphine, however several GPs at our practice say we won't get it from them 🤷. Hubby feeling like he's between a rock n a hard place n more despondent n exhausted with each night that passes.
Also tried magnesium tablets, creams and topical oils , not to mention therapy pulsates which appears to agitate it more. Foot massages, baths and following good sleep hygiene has no effect
Oh no - already on Neupro. He will have to strongly insist that he wants off it.
Since he is already suffering I would suggest he increase the dose to add one sixth of a patch and wait for his symptoms to settle before starting to reduce. He can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or he can switch to 1.5 mg ropinirole. Since he can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount or he may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as he nears the end. Some have used kratom or cannabis temporarily to help. But in the long run, he will be glad he came off it.
Dr Murphy will prescribe buprenorphine. He will also arrange an iron infusion. You mentioned he struggled to take iron. What did you mean by that?
If he needs an antidepressant trazodone is safe for RLS.
You cannot augment on pregabalin. RLS symptoms can break through for various reasons. How much was he taking and was he taking either pramipexole or Neupro at the same time or had he recently stopped taking pramipexole when he started the pregabalin?
Iron tablets upset his stomach.He was taking upto 6x 0.88 pramipexole at night, he managed ,with great difficulty, to reduce and come off this before starting the pregabalin. He came off pregabalin before starting neupro patch after GP said he was much much less likely to augment with neupro. This GP DID know about augmentation etc. n was sure it would be the answer.
So he'll try your suggestion for the patch n hope n pray it will offer him some respite till we get the appt. with Chris Murphy.
Thanks for your advice.
That was one and a half times the maximum amount of pramipexole. That must have been really rough for him! And of course his doctor said he was less like to augment on Neupro as it was thought to be so but has been disproven since. Dr. Murphy thinks that too.
He probably wasn't taking enough pregabalin and didn't allow enough time for the symptoms from the pramipexole to settle as they can interfere with its effectiveness. Also according to the Mayo Clinic Algorithm the usual effective dose is 200 to 300 mg. and the usual maximum dose is 450 mg and one can take up to 600 mg. The reason I asked is that although buprenorphine is very effective ,it can have side effects that are unpleasant and it can be hard to get because of the opioid crisis and friends may not understand that one doesn't become addicted on a low dose for RLS, so if he didn't have side effects he couldn't live with on the pregabalin then if it works for him at a higher dose it is a better choice.
On the iron tablets, did he try iron bisglycinate (gentle iron) as that is much less likely to upset the stomach or cause constipation? If not, he might want to try them while he waits to see Dr. Murphy and get an iron infusion.
Thanks Sue, I'll get him to try the iron bisglycinate n 🤞it'll help. I know he didn't like pregabalin (put weight on n felt really 'out of it'). Can't remember what dose he ended up on but had increased it a couple if times as per GP advice n was nearing the max. Had bad couple of weeks coming off. He's sleeping at moment!!!! After several nights of just couple of hours I think last night was a bit better, do I'll let 'sleeping dogs lie' for a while longer🙏
I'm sorry he had withdrawal symptoms from the pregabalin. His doctor was ignorant. One needs to withdraw very slowly like 25 mg every 2 weeks. if one does that there will be no withdrawal effects.
He might want to try gabapentin. It is much less likely to cause weight gain. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
The beginning dose is usually 300 mg gabapentin [If he is over 65 and susceptible to falls the beginning dose is 100 mg ] Start it 3 weeks before he is off ropinirole/ Neupro although it won't be fully effective until he is off ropinirole/ Neupro for several weeks and his symptoms have settled. After he is off ropinirole/ Neupro for several weeks he can increase it by 100 mg every couple of days until he finds the dose that works for him. He can take it slow to see if he does have the same side effects.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 hours before bedtime.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen so he should give it that time before giving up. 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 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.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." If he does have side effects he can't live with than he should reduce by 100 mg every 2 weeks to avoid any withdrawal effects.
The reason I suggest trying gabapentin first before going to buprenorphine, although he should use it to help his withdrawal, is because buprenorphine can be hard to get because of the opioid crisis and there is the stigma effect for friends and family who may not understand that you won't get addicted taking it for RLS. Also some of the side effects of buprenorphine can be hard to live with although if you find they are OK while withdrawing from ropinirole/Neupro then stay with it.
Thanks Sue. He's on this site so I'll make sure he reads this.
Hello, I noticed you mentioned mirtazapine, I was on the highest dose and it wasn't good for me, took me a while to come off it but when I did, I not only lost weight but my RLS improved greatly. I then was put on sertraline and I'm not taking it as within a week I was getting especially during the day, now the doctor wants me to try citalapron, which I don't want to try, as I'm worried it will make things worse. This isn't my usual Doctor so I'm finding it hard to get through to her. I really hope you get sorted and have every sympathy with you x
You are right not to take citalopram as it is a SSRI antidepressant and makes RLS worse. You can't get wellbutrin or trazodone which are safe for RLS as I suggested?
Thanks Sue, I have asked for the ones you suggested, but she said she didn't want to prescribe those for some reason. I have had to see different doctors as mine hasn't been available lately.
I feel so sorry for you, Squirmy. What a totally uncaring doctor. I hope you can make some complaint.
I take Sertraline too, at the moment I'm on 150 as I am just so very anxious. It doesn't seem to affect my RLS more than anything else.
I did try the one you mentioned....something like Mirtrazole..... it had disturbing effects and I couldn't cope with it at all.
I hope you get the help you so desperately need.
Are you a doctor? You seem to dish out a lot of medical advice.
No I am not. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
You can take or leave her advice,but don't have a go at her just because she's trying to help anyone with this miserable condition,,(hidden?????)
That means he has left the forum.
Ah the old "troll and go"
Thanks for defending me by the way.
Glad you are on this forum, your extensive knowledge about RLS is only outmatched by your will to help others 🙂
He should not be a doctor!
RLS, depression and anxiety are most often caused by neuroinflammation caused by foods in our diet. You can google 'foods that cause inflammation'. youtu.be/LKJg0Kd59tk?si=U3k...
Unfortunately many people have been damaged by poor advice from health professionals. I would never recommend trusting an internet forum for medical advice BUT if you go to the sources that they got their information and they are sound e.g Mayo clinic, respected doctors who have published in the field then it is worth exploring. Doctors are humans and can be wrong and being a GP means there is a lot of knowledge to keep up with. A good GP will listen to information you bring them and critically assess it but they are short of time and vary in how much effort they are willing to put in. Just look at the opioid crisis, GPs are fallible. I am lucky, I am a veterinarian so am trained to look at and understand medical evidence which helps. There have been occasional comments here (not by Sue) that have been unhelpful but on the whole information in well researched and balanced. When you are struggling with a health problem it is hard to find the energy to find sources on your own so people like Sue are invaluable in giving both lived and well researched advice. Ultimately it is your body and your choice and decisions are your own but when you have been let down by the medical profession it is good to have places like this that have sensible considered and well researched advice rather than go down your own rabbit hole which might lead you anywhere.
New doctor ASAP that one doesn't care what happens to you and you will have no say or agency to decide your treatment
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