What medications or natural alternatives

I was diagnosed a year ago and have left side tremors and stiffness but now fatigue is killing my life. I have tried acupuncture and glutathione IV's but no better. Finally tried Mirapex for 2 days but couldn't function. Do side effects go away or better to try l dopa. I was trying to go natural. Any suggestions or help. I pretty much have no energy and getting very depressed.

35 Replies

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  • Do yourself a favor and take levodopa in your choice of time release form.

    Dopamine agonists (Mirapex, etc.) have potentially serious adverse effects and should not be first choice IMHO.

  • Thanks. After that first bad reaction I felt I should move on. But I just needed an opinion. No one wants to give me one here. Really appreciated.

  • @Dede65. I tried to go natural in the beginning but couldn't function without the help of my husband. After 2 years I finally went on Sinemet and it was like a Miracle for me . I continue taking one Mirapex at night and I take L-Carnitine, B12, COQ10,, Threonate, and D-Ribose to help cellular energy. I take 25/100 5x a day ....every 4 hours.

    God bless you.

  • I agree with park_bear.... I have had pd for 6 years now & have tried many diffrerent medications and they have all had adverse effects.. Some more than others.. So i have gone back to sinemet as it suited me the best with alot less side effects.. However i tend to get alot of (off time) with sinemet they seem to last only around 3hrs instead off 4hrs.. So my neurologist told me to take them every 3hrs instead.. I have now been put forward for DBS. As i am running out of options.. I find now i can tell if im having an (off time) So i will take another sinemet because in my opinion if my body is telling me i need one i am not over-dosing.. Thats just my opinion im under no circumstances telling you thats what you should do...!! Speak to your neurologist or parkinsons specialist they are more than willing to help & they have a vast wealth of knoweledge about pd.. as its there job..

  • @Shami5

    I agree with you. I sometimes have to take Sinemet @ 3.5 hrs - particularly if I wake up early and don't get enough sleep.

  • @Shamu5 . Sorry I mistyped your name!

  • I am into my 11th year post dx.... My Neuro at Mayo in Rochester MN told me that I was my own Neurologist. by now I know better than him as to what my body needs. Just use your head!

  • Thank you too. That's very helpful. The neurologists keep telling me that it's up to me. Then I make myself crazy and do nothing and just suffer. Appreciated your sharing.

  • I was in the exact same position and sort of back there again. I was diagnosed with Parkinson's 10 months ago. I finally gave in and started Sinemet in June. I felt like it was a miracle drug. Stiffness disappeared and I felt like the Duracell Bunny with so much energy. In less than 3 months the fatigue is returning along with some stiffness so I think I now need to increase the dose.

  • I guess i am very Lucky i have a very good & helpfull neurologist & parkinsons specialist... After reading what other people have put about theres on here... I know at the begining you will feel down/depressed and feel like its a guessing game or trial & error.. I did when i first started out on this adventure.. Its all about what suits you best... What suits you may not suit someone else.. So keep strong & make pd live with you not you live it... Also if your not happy or feel not well please speak to someone... There are people out there to help you.. You are not alone..

  • Hi, Since you are trying to go for natural, try this out, but probably need patience ;

    fightingparkinsonsdrugfree....

    Some people take longer than others.

    Please disregard if doesn't sound right for you.

  • Qigong. Your link leads to this link: fightingparkinsonsdrugfree....

    Bianca Moll overcame Parkinson's with Qigong. It is a major commitment though - she practices 3 hours/day.

    barnesandnoble.com/w/reboot...

    This study demonstrated improvement using Qigong:

    ncbi.nlm.nih.gov/pubmed/162...

  • my impression is that he is doing/stimulating manually something that was autonomic in the past...he's priming his electrical system, presumeably. going to my favorites file.

  • I use that website with very good success.

  • Hi rhenry45

    I am always following you. it's a weird feeling, like I trust you. Pardon my ignorance what is Oigong and how it benefit us with PD. I really haven't had time to google it. Thanks

  • good. I am using the Qigong excercises on this site. fightingparkinsonsdrugfree.... The person who owns th is site is Howard Shifke. He cured himself of PD and he is really nice. I think he has been the most beneficial person I have ever talked to. I use his coaching and he helps me out a lot. I highly recommend doing the exercises he shows and maybe even get coaching if you want to do it.

  • It is such a hard thing the way we all respond differently to different drugs. One thing my neurologist told me though is that there are really good drugs to deal with depression and we should get on to that as soon as we can. That way you have a better base to deal with the rest of it!

  • IIt's absolutely true that what suits one person does not suit everyone. Unfortunately it IS a case of trial and error and being prepared to experiment to some extent. I know some people have had serious side effects with dopamine agonists and that put me off taking them - but I now take 4/6 mg ropinirole (a DA)every day and suits me very well. To a large extent it is up to you - the neuorologists can advise but only we know how our bodies react to the various drugs.

  • I take Stalevo and find it extremely effective. See: medicines.org.uk/emcmobile/...

  • Dede65: Be sure that your Sinemet (or any other PD meds) are not taken with animal-based protein. This can result in the Sinemet not reaching your brain and therefore you will be in an "off" mode. Get with a Parkinson's dietician to structure your eating habits to enable the meds to do their job! You will be amazed at the change in your life!!!!!!!!!!!!!!!!!!!!!!!! Annie

  • i'm displaying movement problems but these seem to be fatigue dependant i'm finding. i'm taking supplements, with indications that's what I need, (my gums tighten up?!!?) I find flexing my leg muscles (relaxing them) by simply crouching a couple times while cooking, reveals how achy they are after exertion and perhaps over exertion? (I am sawing up a big pile of debris lumber on my table saw: involves a lot of bending to pick boards up.....good exercise?) I find if I rest/sleep I recuperate some, but the difference is that at 70, it takes me 3X as long to recup to what is normal now and maybe even bestter a bit, more like my old self.

    conclusion? fatigue is engine no. 1. i'm going to treat my fatigue.

  • Sometimes I feel like my teeth are being slowely extracted. Do you get that feeling? It is awful!

  • no........I need to replace leaky fillings though.......and know the feeling

  • I'm taking Sinemet. It has done wonders for my tremors, achiness, slowness, tenseness, and depression but it has done nothing for my energy level, fatigue and general weakness. Doing just a little physical work knocks me out. Luckily I'm retired and can work at half hour intervals and then rest.

  • run this by your neuro, but I think it's to be expected when you take heavy duty drugs ...... your body's immune system is going to tax you ....only natural. fatigue could be caused by what is perceived as foreign substances by your defense system and not necessarily your pd? it's up to you to determine. drugs + exertion? I think my fatigue is caused by exertion because when I wasn't busy like now, I had weakness, not fatigue.....that's what my bio-feedback is telling me. i'm not on meds so far.

  • I would suggest looking at a natural product called Immunocal for increased energy. You can read about it in PubMed.com and find it on the IMMUNOTEC.com website. You can also Google Immunocal and Parkinson's disease.

  • Try Octacosanol which can be found in this supplement from Swansons. swansonvitamins.com/swanson... and it called Policosanol. It is a really low dosage and you can take it 3 times a day and it fights fatigue very well. Octacosanol has been studied in PD and has been shown to have very good results. I take it every day and my sleepiness or fatigue/drowsiness is greatly reduced. It helps me stay awake in the evening so I do not crash before dinner.

  • I have similar sounding symptoms but found that azilect made that feeling of total exhaustion disappear. It was liberating. I think you need to try the meds for a while if possible tho as it took 3 months to get over the side effects of dizziness and mild nausea. I also now take it very easy and avoid stress where possible.

    Hope it helps.

  • I have gone all natural and have had good results. I was given carbadopa/levodopa at the time of my "diagnosis" which consisted of a 15 minute in the office evaluation and I had awful side effects from it...(brain fog, blurred vision, dizziness, vomiting) so bad that I went to the emergency room from work. My blood pressure which is usually 120/80 was through the roof (130-160 over 95-106). I don't know if that was from the C/L or fear of losing my job! At any rate I talked to my Neurologist and he suggested I cut back from 3 25/125 pills a day to 2. I still had the bad side effects. I cut back to 1/4 pill 4 times a day and that was okay for a week but when I had another dizzy spell I told him I was going off it.

    He had no helpful suggestions for natural medication so I went out on my own searching for answers. I came upon a product called Immunocal which is a whey protein isolate powder that includes Cysteine. It helps the body produce Glutathione which is a natural anti-oxidant. It is better than taking Glutathione IV or in pill form because it works on a cellular level and prepares the cells in the body to accept the body's own Glutathione. It works because the powder has never been exposed to heat because it has not been pasteurized like other Glutathione products and that heat kills the active properties in the Glutathione.

    I read many articles and studies on the product and testimonials from people who helped their PD symptoms. There are articles about Immunocal on the PbMed.com website (the National Institute of Health) and it is one of the few natural products listed in the PDR (Physician's Desk Reference). I tried it for two weeks, 2-3 pouches a day before I began to see results. Within a month I regained some (not all) of the strength in my arms and legs, my balance was greatly improved, my gait was normal, my arms swinging freely and my energy was good. I am still taking 2-3 pouches a day and feel great...and look ten years younger!

    It didn't help with all of my symptoms. My voice and speech are still affected. I stutter and slur words at times, especially when tired. My handwriting at time is illegible and at times okay. My arms and legs still lack "UMPH" but I am much stronger. Before Immunocal I couldn't kick my legs in a swimming pool enough to propel me forward and I couldn't bounce a basketball even 10 times! Now I can dribble up to 50 times while walking... I haven't been back in the pool but I can get on and off my horse from a mounting block which I couldn't do before.

    I'm not sure if Immunocal is for everyone but it did help me. You can find the product at IMMUNOTEC.COM. Feel free to contact me if you have questions. If I can't answer them I can tell you who can.

    I also started taking CBD oil. This is a byproduct of Hemp without the THC so you don't get any kind of "high." It is supposed to coat the nerves and help in brain/body function. I can't tell precisely what effect it has had but I feel like my brain is working well with my body.

    People have said that these two products are "pricey" or overpriced and to that I simply respond, "What price do you put on your good health?" Compared to wheelchairs, walkers and long term care or paying for medications (Many medications)... where would you rather spend your money?

    I only wish you, whoever tries the products, the best of times and the best of luck. I am not a doctor and can make no promises. I can only share with you my own experiences.

    I am still experimenting and this week have added Mucuna Pruriens to the mix. I am hoping to see if it will help with Bradykenisis which I experience on a minor level. I am still trying to figure out how much to take as it comes in all form of mg's and %s. So far I am taking 2 pills/day of 15% Ldopa (120 mg) each. I have seen up to 98% powders and have read some posts on this website but I have not as yet noticed any real changes although it has only been less than a week that I have started taking it.

    I will say also that the most powerful result so far for me working with my symptoms has been cardio exercise. Walking briskly up hill on the treadmill, riding the stationary bike, Zumba, Yoga and most especially BOXING lessons have done more for my coordination than any substance I have put in my body.

    Truthfully, I don't know if I have PD or not. I'm not sure it matters in the end because there is no drug that can cure it only ones that relieve the symptoms. So I treat myself as if I do have PD because I do have some symptoms that cannot be denied. I just work with the symptoms the best I can and get support... and GIVE support to others. I feel like there are ways to work with this dis-ease if you are willing to WORK at it. Anything that is worthwhile often requires a bit of effort but it may pay off in the end. Along with a healthy attitude can improve one's quality of life to the point of not being defined or burdened by the disease.

    That is my opinion, at least. I know and appreciate that there are many people who have far more and difficult symptoms than I and I don't mean to belittle those people and their experiences at all. Nor do I have any opinion of those for whom the medications are working. I am happy that they find relief. That's what I want for everyone with PD, relief.

    Blessings

  • Macuna won't work unless you take Carbidopa with it. Or you can do the Dr. Hinz amino acid therapy where he has you take a really large amount of it. But to do that you need to follow his protocol by taking L cysteine and 5-HTP with it so you don't get nausea from it. It looks like a good protocol but you need to do some research and find a doctor that can help monitor your amino acid level.

  • I have been taking 240 mg 2 x a day with great redults for bradykinesia and speech,as well as balance withou tnausea and without carbidopa.

  • That is quite a large amount. Which brand do you use?

  • NOW. I read thaty you can safely take even more. ..

  • NOW is the brand .

  • Keep trying ..... Less Western Meds the better. I've found the thing with acupuncture (which by the way works very well for me) is to believe it will. Our brains, malfunctioning as they are, are capable of ar more than the 10% we use!

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