If you are new to the forum I always say "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."
Time and again I get no answer and then later in one of your posts complaining about your RLS I discover you are taking a medicine that makes RLS worse and I could have provided a safe substitute and saved you weeks or months of suffering.
So please answer. 😀😀😀
Written by
SueJohnson
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Hi I'm on venlafaxine 225mg daily clinical depression. I've been taking this for years. My RLS is in remission as I write, praise God! And I'm in talks with my GP and pharmacist at the GP Centre. He's their specialist Pharmacist and he's brilliant!So, I'm doing fine now but it's trauma flashbacks at certain times every year that exaserbate my RLS. I'm coming out of the Christmas trauma associations flashbacks now as January reaches its middle 😃 but thank you here for all your help and information. From Hollygreen 😊
How horrible to have those flashbacks and for them to last into the middle January but glad your RLS is in remission. You mentioned venlafaxine before and I mentioned that as it is an SNRI anti depressant that it makes RLS worse for many but not all and you seem to fall in the latter category. It's strange how medicines affect us differently. 😀
Yes, it is! The human body and the human mind is staggeringly amazing! I like the fact that I'm living in the first ever time when mental health is within the normal everyday so to speak. The NHS here have taken it seriously during my lifetime!I have 7 dates each year which cause flashbacks from my early life through my subconscious. The Christmas ones start in early November. The March ones start in February. The May ones are the worst and start in April. There are 4 more per year after May.
Hi, Have you tried emergency therapy? I have cptsd and flashbacks were ruining my life. I had emdr and it worked brilliantly I no longer have distressing flash backs and night terrors. Best thing I ever did.
Hi Delilah, wow thank you. No. I haven't. About 10 years ago one of my pupils' mother was doing a PhD. As they were saying goodbye I asked her what her PhD was and she said "Oh, it's just eye movement therapy for children. It's just something in psychothepy." I later had a look at what she was doing and I thought wow they'd never think it would apply to me! All people see of me is a fully functioning teacher not someone who's basically broken and with cptsd 🙂
Ah bless you I totally get that. We get so good at masking don't we?! I got diagnosed in 2020 after 20 hrs of DV. I tried medications but they didn't really help and I become quickly tolerant to them.
My psychiatrist referred me for emdr on the NHS and I think I waited 18 months for it.
It's hard don't get me wrong as you have to go right back to the specific events. But the feeling afterwards is fabulous it just feels like it gone. If I try and think about those events now I can't recollect all the details and it as if it's in black and white the colour has gone from it ( if that makes sense). I do still have some anxiety and I still have a extreme startle reflex. But I can cope with that.
My C-PTSD is due to early life trauma which continued until I was 60 years old. Family of origin stuff. I have successfully blocked the whole lot of them since 2023. So far so good 🙂🙏
Thank you Sue for taking the time to help others. How about meclizine? I’m fairly certain it does aggravate RLS but I wondered if there is any evidence. Thank you
Yes it blocks the dopamine receptors and is on the restless Legs Forum medical alert card. Unfortunately I don't know of any research showing this. It is common knowledge and mentioned in a number of articles including one by Dr Buchfuhrer.
I totally agree that meclizine is one that makes RLS worse. But (and it's a big but) I was hospitilized recently for 5 days with severe vertigo and I kept telling the doctors I couldn't take it but then after the 3rd day I found that if I took it only in the morning I was then ok at night. It's the only medicine that worked for me for the extreme vertigo dizziness.
I have a video appnmnt with md on Friday. Seen your posts about ropinirole so decided to talk to md or get referral for neurologist and see about getting off of it. 2 pills daily 1g each. Controls the rls symptoms ok. Side effects bothersome. Any info you can provide me will be greatly appreciated
You may have seen this but in case you haven't I'll repeat it here.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.
Dopamine agonists like ropinirole, pramipexole and requip are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After that 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? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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 like therapulse, using a standing desk, listening to music, meditation and yoga.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
Hi Sue Thank you for all you do on this site - You're quite an angel for us all ! I came off blood pressure tablets after many years as my pressure was no longer high. I had around 2 months of only minor RLS until my BP began to rise again - so the respite was short lived but good to come off the meds for a while and give the body a break. I am back on them now but on half dose - I expect I may have the return of RLS albeit hopefully less than before.... and so it seems that BP medication can cause RLS. The other meds I am on are Metformin 2000mg / Statins 10mg / Xarelto 20mg. Supplements Vitamins C at 1,000mg / D3 5000 iu / B1/6/12 at 50mg / Magnesium Glycinate 350mg / Co enzyme Q10 at 100 mg / Saw Palmetto / Alpha Liporic acid at 50 mg. Kind regards Peter
All statins can make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes which I assume you have since you take Metformin and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
I take gabapentin x 3 300mg, 1 x pramipexole 0.088mg (weaning myself off pramipexole) I take magnesium and gentle iron, cannabis oil. I have good days and bad days eg., may be ok today then tomorrow they can be bad, I have RLS in both legs and now in my arms.
I also suffer with arthritis in my spine, hands and osteoarthritis in right shoulder and right arm I take the cannabis oil for the arthritis pain because I was fed up of pain killers off my doctor putting chemicals in my body.
You are doing great weaning off the pramipexole from 6 pills! The last 2 reductions will be the worst. If you can get regular cannabis or kratom or a low dose opioid that will help. After the withdrawal symptoms quiet down increase your gabapentin by 100 mg every 2 days until your symptoms are controlled.
Dithiazide is a diuretic which can cause low potassium which can make RLS worse. You can either take extra potassium or switch to a potassium sparing one. When you have blood tests it would be wise to check your potassium levels.
However, Olmertan is an ARB which is OK and interestingly may increase potassium levels.
Escitalopram is a SSRI antidepressant also used for anxiety. Safe ones for depression are Wellbutrin (zyban) or trazodone. For anxiety buspar (Buspirone) and trazodone, OTC supplements that help anxiety are Ashwagandha, L-theanine and Honokiol.
Rivaroxaban , Eutroxisig and Propranolol are fine.
Since you have hypothyroidism you may know this but time your medicines so that you take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.
If you are taking it for depression, wellbutrin and trazodone are safe. If you are taking for anxiety buspar (Buspirone) is best but trazodone also helps and gabapentin helps some. OTC supplements that help anxiety are Ashwagandha, L-theanine and Honokiol
Hi Sue - Can you tell me if Metformin affects restless legs? I have mild type 2 diabetes and was offered this to try. I also suffer from ET - a rare blood cancer and have read that Metformin can help to control inflammation and stop the cancer cells in the blood from proliferating. The Metformin would be great for me but only if it does not reintroduce RLS as I am having good success with buprenorphine 800 mcg daily total.
It can make RLS worse in some but that means it may not. I would think stopping the cancer cells from proliferating would be more important. You can certainly try it to see.
In any case you can also increase the buprenorphine as you are still on a relatively low dose. According to the Mayo Algorithm the average effective dose is .5 to 6 mg. Increasing your buprenorphine would cover any increased RLS from the Metformin if there is any.
I am sitting here trying to think of what would makes my RLS bad. The worst thing I can think of is Alcohol. I used to drink. What I mean is decades ago, prior to being diagnosed with RLS I used to drink. However, due to RLS, I no longer can have more than one beer.
Alcohol gives me hangexiety and turns on my RLS. That is the best way I can explain it.
Over doing THC edibles can do it too. Although 50mg can be helpful.
Benadryl doesn't affect me and puts me to sleep. Which is very helpful in an Epi-pen situation. That's all I got. Thanks for helping with the group.
Hi Sue, I have a really bad non-stop cough and cold. I've been taking Mucinex DM Max, which is Dextromethorphan HBr (cough suppressant) and Guaifenesin (expectorant). My RLS has been terrible since I started taking this otc drug. I don't know if it's the dug causing RLS, or just my continual coughing!Any thoughts?? Thanks!
Dextromethorphan can make RLS worse. Avoid anything that contains Chlorpheniramine Maleate, pseudoephedrine, phenergan, Diphenhydramine (Benadryl) or Doxylamine.
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Listen to an excellent Webinar, hosted by the US RLS Foundation and the speaker is Dr. Buchfuhrer.
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My experiences on the effects of; lifestyle changes, supplements and drugs while trying to combat RLS.
