I've had RLS for many, many years. It's slowly getting worse now.
I'm curious to know if anyone experiences the onset of a "restless legs attack"? That is when instead of it creeping generally on in the evening, it comes almost as a wave lasting 15-30 minutes before subsiding. It feels almost like a kind of seizure. I can feel it fizzing in my nerves all over and giving me a bit of brain fog. A bit like overdosing on strong coffee. Then it subsides and I'm OK again. It can come on any time of day.
Hope you're all doing as well as you can.
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Awkward_fellow
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Sounds like you are suffering from 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.
In your case the symptoms are occurring earlier in the day and they are getting worse. Normally they occur only at night. Unfortunately that means you need to come off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
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. 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 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. 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." 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).
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, 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.
Thank you for your extensive reply. My GP does not intend to move me off Pramipexol but is monitoring the dose and my response to it. This may mean change in the future. I've had no mention of ferritin, but it shows as 'abnormal' in my blood tests. My GP group don't seem to be very up to date on Restless Legs but they are, at least, on the case. I think I'll ask them for a thorough review of this rather than taking it piecemeal. It may move things along.
I'm very thorough on my foods, but have slowly gained a slight intolerance to gluten.
If ferritin shows as abnormal on your blood tests then it is very low because what is normal for others is too low for those of us with RLS. If your transferrin saturation TSAT) is OK - less than 45% and most are, then 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. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, 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 or at least take it in the morning if you take your iron at night. 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 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Don't let your doctor increase your pramipexole. And print out the section of the Mayo Algorithm about dopamine agonists like pramipexole and about augmentation. to show him/her. The longer you are on it the harder it will be to come off it and your dopamine receptors are more likely to be damaged so that gabapentin or pregabalin won't work.
Attacks like that are usually connected with something you ate about half an hour before so you need to keep food diary and an elimination diet until you find what's triggering the attacks. There could be more than one trigger so it may take some time to track down the culprits. Most likely would be refined sugar or refined starch which is metabolised into glucose very easily. Sugar causes systemic inflammation and inflamed nerves are hypersensitive leading to RLS. Other things which are likely to cause inflammation are fruit juices, refined seed oils which cause oxidative stress, alchoholic drinks (some are worse than others) artifficial preservative like potassium sorbate (E202) which is found in margarine but can alsp be found in sauces and other 'wet' foods likecommercial hummus or coleslaw. The simple solution is to avoid processed food altogether.
By avoiding inflammatory foods I've been ble to eliminate my RLS without meds.
Thank you for your thoughtful reply. I do watch what I am eating, and I don't have a sweet tooth so my foods tend to be savoury, spiced, or sharp. I have not been able to discern a link between food and RLS. The only change over recent years has been a slight intolerance to gluten.
Intolerance to gluten indicates that you are still eating wheat or other grain based foods. The starch in flour is just a long chain of glucose molecules which is easily broken down and the glten causes leaky gut which means that the starch is absorbed faster causing white bread to have a higher GI than refined sugar.
Iron (ferritin levels) is a key to RLS. So many doctors overlook this in favor of "The Pill" - I resisted multiple attempts for docs to get me to take ropinirole (similar to Pramipexol). Simple iron supplements moved my Ferritin level from 49 to 105 in 3 months. Severe RLS disappeared in the first week!
I think there is also a clear connection w/iron to gut health (ie poor absorption of iron) leading to low serum iron and consequently low iron in the brain. The telling iron connection is that in some pregnancies - the growth demands of the fetus can leave the mother with iron deficiency and RLS, which quickly resolves after birth. But alas, not for all mothers. There is something else in play with the RLS/iron deficiency hypothesis with this and of course with RLSers having a high Ferritin level. RLS is a movement disorder and a friend of mine has cervical dystonia - also classified as a movement disorder. The biochemistry of that and RLS is profoundly complex.
My first thought when you mentioned low iron ferritin is that the episodes have something to do with it. Sounds like a weird kind of dizzy spell or something? You should probably try and get it up through supplementation, but when it comes to RLS, the trouble is that it doesn’t necessarily reach the brain where it really needs to be.
Only when I was on dopamine agonists. Luckily, I am now completely RLS free on low dose Buprenorphine.As you're still on Pramipexole, and were advised 2 years ago that your increased, severe RLS and daytime symptoms were Augmentation, the advice remains the same. You need to change medications.
If your GP still won't listen, try pointing him to RLS-UK website or change doctors.
Have you experienced Impulse Control Disorder? The longer you're on Pramipexole, the more likely it is to happen. Your GP should expressly warn you of the high prevalence of ICD before prescribing these drugs.
Since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...
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