I have pfs induced anhedonia and someone brought to my attention an l dopa protocol which has you take l dopa for 4 weeks titrating up each week to 150mg. This was to downregulate dopamine receptors.
then you withdraw cold turkey and avoid dopaminergic activities for the next 21 days to promote upregulating post synaptic d1 receptors
unfortunately after the 9th day, I think withdrawal kicked in and all hell broke loose. I’m on day 15 and I feel so suicidal. I feel super agitated and restless, cognitive dysfunction and crippling anxiety.
I’m scared I caused permanent damage to my brain and body(neurotoxicity, DAWS?) and I’m not sure what to.
Hoping someone can please give me some guidance I’m in complete distress. Should I take clonazepam or something?
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Jordan112
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You should never withdraw cold turkey from a dopamine agonist like L-dopa. Go back to the 150 mg and let your symptoms settle for a few days. Buy an inexpensive scale on Amazon ($11 in the US) so you can measure the amount of pill to reduce .
The normal reduction would have you reduce by an incredibly small amount but since you have only been on it for 4 weeks I would suggest you 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 or you may be able to reduce more quickly. 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.
Now the question is do you have RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
If you meet these criteria then it is important to know that Ropinirole, Neupro and pramipexole and certainly L-Dopa are no longer the first-line treatment for RLS as they are all dopamine agonists , gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks 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 or magnesium-rich foods, 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 nor calcium-rich foods 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? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
If you do have RLS: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
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.
Oh Jordan, I’m so sorry that you are experiencing this. I can really relate to the suicidal feelings, anxiety, agitation and painful depression. Four years ago in January, I stopped taking 9 mg of Neupro over the course of one week and lost my mind. Please follow the advise you are given on this site. You must go back to taking the DA and reduce VERY slowly! It will not be easy but so many of us have done it and survived. Listen to your body. You will know when it’s time to reduce the medication. Best of luck to you.
I've taken clonazepam off and on for about 28 years. The last few years I take 1/2 tablet every night. My GP tried to wean me off about 5 years ago but all the Rxs he tried gave me sleepless nights and serious side effects like continued nausea and dizziness. Clonazepam is very addictive and was thought to cause dementia. I'm 84, very active, linedancing, walking, driving . I've talked to my neurologist (I also have Cluster headaches) and he is OK with me staying on Clonazepam which helps me to sleep. I stick strictly to the RLS diet as advised by Sue. I hope this helps you.
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HELP!!!! RLS is ruining my life
RLS is ruining my life....
RLS controls my life
Can anyone offer some help regarding my Ferritin levels for my RLS please.
Making rls manageable, a continuing story
