RSL & surgery

[samd5555]

Hi all

Will be having surgery in a few weeks time and wondered which anti-sickness medication is best to have after GA? I know that the UK medication list will be different from USA but any guidance gladly received.

[SueJohnson]

Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"

[samd5555 in reply to SueJohnson]

Thank you for the continued support, really helpful

[samd5555 in reply to samd5555]

Are we at a greater risk of DVT also?

[Hidden in reply to samd5555]

I am a bit late seeing this. I am in the UK and when i had my gallbladder removed i had a talk with the anaesthetist and explained i need only zofran as the anti nausea med because of RLS it is the only one that does not trigger my RLS. They said use that one for everyone. 😊

[HeBgBgirl in reply to SueJohnson]

It is imperative they understand nothing else but Zofran!! Trust me! I had an L4/5 fusion and about an hour after waking in my room the demon came to visit!! It was the most terrifying horrendous episode I’ve ever had with RLS!! I was screaming for God!! The staff in a very highly rated hospital didn’t know what to do!! A nurse was so upset just watching me she started to cry and had to let the room!! It lasted for more then 4/5 hours!! I could go on but I’ll digress. Just please please make sure you stress it!! The medical community doesn’t know enough about RLS . They say it is the most commonly did ease that no one knows what about!!

I apologize I don’t mean to scare you I just don’t want it ever to have to go through what I wear through. Good luck with surgery. Gods hands with surgeons and you.

[SueJohnson in reply to HeBgBgirl]

I think you meant this for samd5555. I thought I had given you the same advice. Did they not listen to you? That is terrible you had to suffer so !

[HeBgBgirl in reply to SueJohnson]

Thanks Sue! You probably did reply I just see these posts and sometimes I start out to give my 2 sense and go off on a rant!! Like now I’ve been getting RLS for the last 5 nights waking me up with a searing pain & “ the demon “ along for the endless rocking kicking etc!! It has been some thing out of sci-fi movie lol I was laughing and crying and asking God WHY!?! I’ll end there or I’ll just keep spewing my brains out on you and everyone else who wants to read my insane life! Which lately is no lifestyle at all….

[SueJohnson in reply to HeBgBgirl]

Understood. I would be off on a rant too in your circumstances.

Did you ever have your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Also some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

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.

[samd5555 in reply to HeBgBgirl]

Thanks for your reply and so sorry you suffered like this. Disgraceful.

[Joolsg]

Zofran( odansetron) or domperidone are the safe anti nausea med that should be used in anaesthesia.Have a chat with the team before surgery.

I suggest you put it in writing. I had a long chat with the head pharmacist at St George's in London before my MS infusion where they wanted to add sedating anti histamines to the drip. Despite the chat, and agreeing on cetir pills, when I turned up there was no cetirizine.

Luckily, I'm used to UK hospitals so had brought my own supply. They were reluctant to let me take pills they couldn't 'scan' but the head nurse agreed in the end.

So, send a letter AND remind the team before surgery to ensure you get Zofran.

The RLSUK website has the safe meds listed. You can show your team. It is under medications, and there's a list of meds to avoid.

rls-uk.org/medical-treatments

[samd5555 in reply to Joolsg]

Thank you for your reply and continued support. I'm presuming we are at a greater risk of DVT also?

[Joolsg in reply to samd5555]

Not necessarily. Unless you have a history of clotting. RLS doesn't increase DVT risk.

[samd5555 in reply to Joolsg]

Thank you

[Jumpey]

I had surgery recently and Zofran was fine. When the anaesthetist came to see me I explained about my RLS and the need for Zofran he ensured this was in my notes and it was carried out. Good luck.

[RLSLearner]

Restless legs should protect against DVT! But this is not a medical opinion just first principles.

[Grammieof4]

definitely Zofran

[kmc12]

Hello samd5555

I am also in the UK and have tried them all !! Ondansetron is the only one which works for me 👍. All of the others are a nightmare for my RLS.

[samd5555 in reply to kmc12]

Thanks for your reply, really helpful & I'll definitely be asking for this one.

[kmc12]

👍. Really hope that it works for you as well

[samd5555]

Thanks kmc12