I have been diagnosed with Parkinson and Restless Leg Syndrom. I have problems with my restless legs - mainly constant tingling and weakness in my legs - and am considering whether I should try GABA (as nutritional supplement), since Levidopa/Carbidopa and the Neupro patch have hardly any effect. It is worse at times and I hardly get any sleep during this time. Can GABA calm the leg muscles?
Since I have Parkinson as well I cannot stop taking Levodopa.
Welcome to the forum. You will find lots of help, support and understanding here.
First let's see if 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.
Do you meet these?
If so you don't want to take Levodopa/carbidopa nor the Neupro patch as both can lead to augmentation of RLS.
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.
Are you on either of these? If so which and how much?
Gabapentin is used to improve the rigidity, bradykinesia, and tremor of Parkinsonism. You should ask your doctor about Rasagiline (Azilect). Rasagiline is used for Parkinson's and has been used to treat RLS. It is not a dopamine agonist like Neupro nor like Levodopa/carbidopa acts like. The hope is that Rasagiline, because it prolongs the effect of existing dopamine, instead of producing more, will not come with adverse side effects. Intense exercise can slow the progression of Parkinson's but will exacerbate RLS, however I would think that would be worthwhile since Parkinson's is a more serious disease.
If you have RLS you want to take gabapentin or pregabalin. Don't let your doctor prescribe ropinirole nor pramipexole. as they are dopamine agonists (DAs). 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.)] It takes 3 weeks to be fully effective. 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 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 for RLS. 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 on the best iron tablets to take and how to take it.
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...
(to be continued so I don't exceed the maximum characters)
Sue, wayoveryonder canNOT reduce the levodopa as s/he has Parkinson’s. RLS can occur is people with Parkinsons, and the treatment is difficult, as people with Parkinsons do not produce dopamine, whereas people with RLS do, but it gets stuck in the brain due to reduced receptors on brain cell to transport it further into the body.
The usual recommendations do not apply. Although some parts do, but I don’t k ow which parts. Anyway, advise carefully please.
Rasagiline (Azilect) which I recommended can be used instead of carbidopa/levodopa.
Good find! Do you have a reference?
Thank you ‚Abonnieren‘ for your answer.
To answer the question, if I do have RLS – yes, I am sure.
In the beginning it was like electrical showers through the legs, mainly the calfes, that kind of forced my legs to move as soon as I was lying in bed.
Then I started medication for Parkinson in January 2023 = 3 x 100/25 mg Levadopa/Benserazid and 0,18 mg Pramipexol – both prescribed by the hospital where I was diagnosed.
In the beginning of September 2024 I had to switch from Benserazid to Carbidopa because of chronic diarrhea. Carbedopa doesn’t work well for me, the effect is much weaker than Benserazid. Still I stuck to 3 x 100/25 mg.
I stopped Pramipexol because I didn’t feel good with it.
I then took Rasagilin but unfortunately didn’t tolerate it.
After that I switched to Ropinirol 2 mg but my legs got worse. So I switched to Neupro patches last September starting with 1 mg ending with 4 mg hoping it would take me through the night.
I am in the process of trying Mucuna to replace Levodopa, but it is a difficult process and is only relevant to Parkinson.
I also had to start Amantadin in October because of dyskinesia.
I have started B1-Therapie, also in September, and take now 2000 mg a day plus 4 capsules Omega 3.
About 2 months ago I started to skip breakfast and drink a ‚bullet proof coffee‘ instead. II had hoped it gives me some energy but can’t really say it makes a difference.
I always tried to stay at the lowest level of medicaion because of posssible augmentation of RLS and the fear of fluctuation with the Parkinson symptoms. On the other hand I feel undermedicated with the Parkinson symptoms all the time. Althogether I am going through a tough phase.
The symptoms in my legs changed to a burning sensation with the feeling of hard calf muscles. This extended into daytime. Know the burning sensation is accomodated with tingling in the calfes and weakness in my legs. This tingling and weakness is horrible at times and my feet start burning too. I keep saying, my knees feel like pudding. My right foot seems to be paler than the left and the toes start curling inside. I kow have an appointment for examination of the circulation of my legs coming up in two weeks.
I hope this is enough information for my background.
I exercise a lot because of Parkingson and my severe knee arthosis. Without exercise it gets worse to move and with the exercise I work against RLS, I can only benefit from one of the other and mobility is more important to me even for a high price.
Unfortunately my next appointment with the neurologist is end of march and I intend to aks vor Gabapentin then and if it is possible together with Levodopa.
I will have my feritin checked next week because you say that this is important.
I will switch back from Neupro patch to Ropinirol as recommandet, I still have some left (2 mg with can be divided to 1 mg). What I understand is that Neupro works continuosly which is not good for RLS. Actually I will try to eliminate both if possible but at night I do get desperate at times.
You write that food supplements can worsen RLS. I take B-complex, magnesium, vitamin C and more. Please give me your advice as mentioned to select the right ones. I don’t take any other medications besides the ones for Parkinsons listed above.
To end this long report – I am female.
I thank you all for your responds - it really helps to be able to share.
Obviously I am not qualified to advise you on your Parkinson's. It's a shame you couldn't tolerate the Rasagiline.
On your exercise I would do it in the morning.
Unless you are going to come off the Neupro you don't need to switch to ropinirole especially since it made your legs worse. And the fact it worked continuously does not make it worse for RLS. I am surprised it doesn't control your RLS.
By the way GABA won't help much if at all but you can certainly try it.
If you are on still on Neupro, you need to come off it. You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole.
Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. 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.
If on carbidopa/levodopa reduce by 10 to 20% every 2 weeks. Don't reduce both at the same time. Again what I said about Neupro applies starting with you will have increased symptoms.
If you are on either of those gabapentin/pregabalin won't help much until you are off them and your symptoms have settled. So there is no point in starting them until 3 weeks before you are off them.
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 your gender is.
I have tried gaba but it didn't stop my rls symptoms.
Gamma-aminobutyric acid (GABA) is the relaxing neurotransmitter and is countered by Glutamate, the excitable neurotransmitter. They are metabolized one into the other by an enzyme (GAD, Glutamic acid decarboxylase). Excess Glutamate is a big player in RLS initiating some of the wide awake episodes and allowing you to "get through the day" with very little sleep. Taking GABA as a supplement is mostly ineffective as it cannot cross the blood brain barrier. But, some people do fine it helpful. Here is a great discussion...
GABA did not help me at all unfortunately.
Hi your situation is very similar to my husband who also has PD, RLS and chronic back problems. Having PD and RLS complicates treatment significantly. Rasagilin is a first line treatment in PD to delay the starting of carbidopa/levodopa. Once you progress it is not an option as it will not help much. He could not function without C/L. Be very careful about stopping C/L speak with your doctor, because it helps your entire body, digestion, breathing, swallowing, walking, etc.
Some of your symptoms are similar to polysensory neuropathy. My husband has this too, idiopatic, he is not a diabetic. He is on Rytary and 2mg Neupro patch. For pain he take a total of 10mg of hydrocodene (5mg tablet broken in half 4x day). He also takes Horizant 600mg at dinner and then 300mg of regular gabapentin at 11am. We are going to try to cut back on the patch to 1mg now that he is on Horizant. Mostly because of excess daytime sleepiness.
When he forgets the patch for one day within 12-18 the jerks start there is no delay in symptoms starting. I asked his neurologist if this could by myclonic jerks instead of RLS. He said maybe and husband also feels weakness which is a symptom of PD. He will tell the neuro my legs feel weak, yet the strength test his normal. Ask your neuro to do the strength test. The hard calf muscles is likely dsytonia, which can be caused by under medication of C/L. You may want to try one of the timed release medications such as Rytary or Crexont. One way my husband is sure his PD is acting up is all over body pain and stiffness. When that happens he has Inbrija inhaler. He uses it maybe once a day.
So what seems to help? He takes magnesium and CBD gummies at night the CBD is not the medical but it does have some THC in it. The magnesium cream will help with the cramping and tightness in calf. He takes a dose of Rytary about one hour before bed. Warm epsom salt baths help with cramping too.
This year we are going to really try to focus on diet and exercise. He can only exercise in pool or do seated areobics because of his back. The vibration devices aggravate everything.
Many folks with PD have trouble with sleep and are referred to s sleep specialist. We met with a specialist early in his diagnosis. He said the medication they use for PD patients was a low dose of klonopin which ironically is also used for myclonic jerks. He would love to take less meds, trying different supplements etc. B1 did not seem to be a benefit.
Good Luck
-Syd
So it would seem that for someone with both RLS and Parkinson's, it would depend on whether the symptoms from Parkinson's was worse than the RLS symptoms from augmentation as a result of taking carbidopa/levodopa in deciding whether to take carbidopa/levodopa or Rasagiline.
If no augmentation than one can take carbidopa/levodopa which controls or helps both. And this seems to be your case.
I am surprised he is taking Neupro since carbidopa/levodopa should control his RLS.
Wish the C/L did which why I wonder if it is related to other health issues and not "true" RLS. Although neuro indicated not always controlled by C/L in PD patients because essentially we are often filling and empty tank.
my understanding is that Gaba can’t get through the blood brain barrier. I read somewhere that Liposomal Gaba could get through. Tried it for 6 weeks without change.
Pramipexole experience 
Parkinson 
Have I or haven't I? 
Anyone experience RLS with Sucralose (Splenda) Sweeteners?
