Nicht nur Nachts im Bett: Hi, 2022... - Restless Legs Syn...

Restless Legs Syndrome

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Nicht nur Nachts im Bett

Imanazudici profile image
21 Replies

Hi, 2022 würde rls vom Neurologen festgestellt. Die Symptome selber habe ich seit 2018. Zu Anfangs wurde Levodopa 100mg/25mg verschrieben. Nach einiger Zeit Neupropflaster, Rotigotin 2mg/24h aber die hatte ich selber abgesetzt. Ich wechselte den Arzt und der verschrieb sofort pramipexol 0,18mg. Zu Beginn 1/2 Tablette. Aber nach 1 Jahr begann ich 1 ganze zu nehmen da die Menge nicht für eine ganze Nacht hielt. Symptome wurden immer schlimmer. Seit ein paar Monaten wirkt die 1 ganze Tablette nicht mehr für die ganze Nacht, daher nehme ich zusätzlich noch eine Levodopa. Die Symptome kommen jetzt Tagsüber auch beim längeren Autofahren und längerem sitzen. Auf langen Reisen im Flugzeug muss ich immer zusätzlich mit Levodopa ausgestattet sein. Ich will das nicht mehr, da ich merke das diese Krankheit mein Leben lenkt, meine Füsse immer schlimmer weh tun und mein ganzes körperliches Wohlbefinden stark abnimmt.

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Imanazudici
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21 Replies
SueJohnson profile image
SueJohnson

You need to translate this into english so we can read it.

Imanazudici profile image
Imanazudici in reply to SueJohnson

OK, no Problem

Kaarina profile image
KaarinaAdministrator in reply to Imanazudici

It is not against HU Rules to post in another language. :) It would make it easier for others to read your postings and reply English in though. If it is difficult for you we can use Google Translate.

Kaarina profile image
KaarinaAdministrator

Hi Imanazudici,

Welcome to our forum. It would be easier for our members if you can write in English. Perhaps you can read English better than you can write it?

Translation from German to English using GoogleTranslate

Hi, rls would be diagnosed by a neurologist in 2022. I have had the symptoms myself since 2018. Initially, levodopa 100mg/25mg was prescribed. After some time new plasters, Rotigotine 2mg/24h but I stopped them myself. I changed doctors and he immediately prescribed pramipexole 0.18mg. At the beginning 1/2 tablet. But after 1 year I started taking 1 whole because the amount didn't last for a whole night. Symptoms kept getting worse. For a few months now, the 1 whole tablet has no longer been effective for the whole night, so I also take a levodopa. The symptoms now occur during the day when driving and sitting for long periods of time. On long plane journeys I always have to be supplied with additional levodopa. I don't want this anymore because I notice that this illness is controlling my life, my feet are hurting more and more and my overall physical well-being is declining significantly.

SueJohnson profile image
SueJohnson

Oh dear - another doctor that is not up to date on RLS. 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. This means you need to come off both levodopa and pramipexole as it will only get worse.

Start with the levodopa/carbidopa first, still taking the pramipexole. Reduce by 10-100 every couple of weeks. 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 Some have used kratom or cannabis temporarily to help.

Once you are off the levodopa you need to reduce by by half of a .088 pramipexole tablet every 2 weeks or so. It will get worse as you near the end . But in the long run, you will be glad you came off it.

Dopamine agonists like pramipexole (and ropinirole) are no longer the first line treatment for RLS. Levodopa hasn't been used for even longer. Gabapentin or pregabalin is. The 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 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 including in a multivitamin 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, oestrogen (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 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.

Imanazudici profile image
Imanazudici in reply to SueJohnson

I asking myself what could be the reason for this...what happened that I got this....ist there any medical explanation for this kind of reaction in a Body

SueJohnson profile image
SueJohnson in reply to Imanazudici

Are you asking why you got restless legs (RLS) or why you got augmentation?

Imanazudici profile image
Imanazudici in reply to SueJohnson

Hi, sorry i was so busy....well i ask myself , what could be the reason to get this disease.....Something must happened in my Body that this causes it. . do you have any Idea?

SueJohnson profile image
SueJohnson in reply to Imanazudici

That's a good question with no easy answer. It may have been a trigger that started it. Women often first get it during pregnancy from estrogen or because their body needs more iron, or later during menopause when they take HRT. Heredity is sometimes a cause. Age is another factor - sometimes it doesn't show up until we are older. A trigger like a medicine or something else can start it and it can continue sometimes after one stops taking it. But there has to be some underlying proclivity as only 10 to 20% of people will ever get it and noone knows what that is.

Imanazudici profile image
Imanazudici in reply to SueJohnson

Wow, our body is acting so confusing....

SueJohnson profile image
SueJohnson

You should ask for the .088 size. You will need 2 of them to equal the .18 you are currently taking.

Imanazudici profile image
Imanazudici in reply to SueJohnson

Well Meat is a good example and sweets. Especially when i get really bad acid burn, then it comes also.

Joolsg profile image
Joolsg

I've translated your text into English. You're in Germany, which is way behind other countries in the treatment of RLS.Neurologists still prescribe Levodopa, which stopped being prescribed decades ago because it has the highest rate of drug-induced worsening (,augmentation).

As soon as it stopped working, your doctor should have taken you off it and prescribed iron infusions and pregabalin.

However, you then tried the Rotigitone patch, but augmentation doesn't go away. Adding more dopamine agonists just increases severity. You are now on 0.18 Pramipexole AND Levodopa.

Read about augmentation.

You MUST get off all dopamine agonists. Slowly. Reduce by half a 0.088 Pramipexole pill every 2 weeks. Reduce the Levodopa by cutting the pill in half and reducing slowly.

Ask your doctor for a full iron panel blood test. Morning, fasting.

Ensure serum ferritin is above 100ųg/L by iron pills or iron infusions.

Ask for pregabalin and start taking it 4 ti 5 weeks before your last doses of Pramipexole and Levodopa. You WILL experience severe withdrawal symptoms so ask for a low dose opioid to help you.

Read all the recent posts and the replues.

Everyone taking these terrible drugs WILL experience drug-induced worsening of their RLS. Getting off them will be the best thing you ever do.

Text
Imanazudici profile image
Imanazudici

Thank you for your comment. I will try to get an appointment by the doctor as fast as i can , but now iam a little bit in fear.

SueJohnson profile image
SueJohnson in reply to Imanazudici

Don't be afraid. Most of us have done it and you can too, and we are all here to help you.

Kaarina profile image
KaarinaAdministrator

Please let us know if you are taking any other medications as some can make RLS symptoms worse.

Bitte teilen Sie uns mit, ob Sie andere Medikamente einnehmen, da einige die RLS-Symptome verschlimmern können. (DeepL Translate)

Imanazudici profile image
Imanazudici in reply to Kaarina

Wow , what lovely Feedbacks! Well, i have Hashimoto. So in the morning iam gonna Take eferox. Also Selen, Iron, Vitamin D3 and at the evening Magnesia. Ibuprofen sometimes. Oh hopefully...ist bad for it......thank you

Es tut mir leid, dass ich kein Deutsch spreche, aber ich wollte Hallo und Willkommen im Forum sagen. Hier finden Sie jede Menge Hilfe.

(Deepl Translate) I'm sorry I don't speak German, but I wanted to say hello and welcome to the forum. You'll find lots of help here.

Imanazudici profile image
Imanazudici in reply to UpsideDownInsideOut

Hi, very Kind !! There's no reason to apologize. I am so surprised for so nice people Here....makes me feel iam Not alone

Ducatidave profile image
Ducatidave

see my post healthunlocked.com/rlsuk/po......

Imanazudici profile image
Imanazudici in reply to Ducatidave

Well, I started to investigate my habits and of course the food Iam gonna eat everyday from Breakfast until dinner. You know, I don't eat saltless completely, because I think your Body needs a certain amount on salt, because Iam working in crafts, so hard work and sweat causes loosing the salt in my body. But I noticed the chocolate, sweets , alcohol and porkmeat lift that up and then I really have a long time to struggle, because it come with cramps in my feed angles and i have to relax them with some kind of cracking them. For hours....later on I have problems to walk. Every single joint hurts. Thank you

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