So, I developed rls suddenly, in the middle of one of the covid lockdowns. While it appears impossible to fully identify the cause, I suffer from hydrocephalus, so have had about 4 neurosurgical procedures. It is apparently common with those with my condition.
It took about 4 nights to fully remove my ability of sleeping naturally (on the 4th night I think I slept for 10-15 minutes). Ropinirole (and about 4 months later cyclizine- to stop nightly vomiting) solved this. Only one side effect remains, and I'm hoping someone has found something that helps.
Within usually 10 minutes of taking ropinirole my nose is completely blocked. Thankfully the cyclizine often means I'm asleep (though if not or if I wake, I struggle to go to sleep). However, every morning my nose is still blocked, and usually takes a while to clear. Has anyone found a way to stop this side effect (anyone else experience it? It is a noted side effect). I've tried various decongestant sprays, and while these work, it's slow, generally no quicker than letting it clear naturally.
Hoping someone has done useful advice
It is one thing to have a blocked nose for a few weeks with a cold, but the idea of having one almost every day for the rest of my life is quite depressing. I think I've had a clear nose on waking, once in the last 2 years. Any thoughts, similar side effects, anyone going through something similar?
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I have a constant sinus drip at the back of my throat, which can often give rise to upper respiratory tract infections and even pneumonia.
I've taken Cetrizine 10mg tablets and they have cleared it up about 90%.
One major warning about Cetrizine is that it gives rise to severe withdrawals if one ever wants to stop taking them . Not insuperable but need to be aware.
A term of a few weeks probably would be ok, if you wished to check them out.
They are a safe antihistamine for RLS.
This may not work for you in preventing blocked up nose, but if noone else comes up with a better alternative, it might be worth a try.🤪
I remember vividly when on Ropinirole that within 15 minutes of taking it, all the veins on my arms would swell and appear prominently through the skin. I also had that nasal congestion. It is listed as a common side effect. I no longer have congestion now I'm off the stuff.The most common cause of RLS is low brain iron, and that's why taking blood tests and iron treatment is the first treatment step.
In your case, it's more likely that your hydrocephalus is the culprit. However, no one should still be prescribing Ropinirole or any other dopamine agonist as first line treatment.
All I will say is read Everything on this forum headed Ropinirole or Pramipexole or Augmentation. Dopamine agonists are brilliant at first. They stop ALL the RLS. Then they turn on you. Top experts believe everyone will experience a severe worsening of RLS on these drugs.
So read, keep the dose as low as possible, ensure serum ferritin is above 100, and never increase the dose of Ropinirole when it stops working. At that stage, come back here.
Or, consider switching to pregabalin, gabapentin or a long half life, low dose opioid now.
Thanks for the responses, largely as expected. I regularly see my doctor, so not worrying about dangerous side effects, just annoying ones (infuriating to stop the legs shaking, only to not be able to sleep because of noise blocked or vomiting (thankfully taken care of by the cyclizine).
It took about 3 months of slowly working out the dose, but I've been taking the same dose for a few years. I often only sleep 5-6 hours, which isn't enough but usually works
Welcome to the forum. You will find lots of help, support and understanding here.
Cyclizine is known for making RLS worse for most. Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron), Zofran (ondansetron)
I agree with Joolsg. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatments for RLS gabapentin and pregabalin won't work.
DA's (dopamine agonists) used to be the first line treatment for RLS which is why so many doctors prescribed them, but they no longer are because of the danger of augmentation
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Since you are suffering with the side effect of having your nose blocked and you don't want to live with this the rest of your life and with the threat of augmentation, this would be a good reason to come off it and switch to what is now the first line treatment.
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. 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. 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 and post them back here. 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 atHttps://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.
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. 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 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 all, although I have not taken Ropinirole for several years I still get blocked nasal passages which is down to my Hay fever type allergy which I take Fexofenadine but possibly any anti histamine might do
I am lucky insofar as my RLS is nowhere as bad or frequent, and taking the antihistamine is only usually needed in the summer with the high pollen and dust levels.
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