Levadopa not working so well :( - Cure Parkinson's

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Levadopa not working so well :(

PDsux_10 profile image

Hi, My husband has been taking a set dose of mucuna 99% levadopa pretty consistently for almost 4 years and has been at the same dose for a long while now and only having to tweak it periodically for various reasons. BUT, this last week he has been getting severe dystonia/ dyskinesia and he tried increasing the dose which helped, but then the twisting would become unbearable and last for several hours. Writhing on the floor etc. So now we cut WAY back and no matter how much or how little levadopa he ingests he gets mild Dystonia and Dyskinesia. I'm just wondering if anyone has had this happen to them whilst taking levadopa in any form? Does he just stop the levadopa, since he has severe tremor and stiffness without it? He rather suffer that way, than get dystonia etc with the levadopa every time. This whole thing is just brutal and a constant guessing game. I'll say one thing, PD keeps you on your toes!

Thanks for listening

Cheers

Mel

60 Replies

Look into Amantadine

PDsux_10 profile image
PDsux_10 in reply to RoyProp

Hi RoypropI bought some it's only a box 50 tablets at 30mg and hard for me to source it here in Australia. I haven't given him any yet, still trying to learn about it more. But it seems like this might be hard to do here :/ Do you take it?

Thanks

Mel

RoyProp profile image
RoyProp in reply to PDsux_10

No

puretone profile image
puretone in reply to PDsux_10

Isn't it Symmetrel here in Australia? I would have thought it was perfectly easy to obtain with a script.

PDsux_10 profile image
PDsux_10 in reply to puretone

Oh I wasn't aware. Not sure I will be able to get a prescription though, I don't think doctors will give it to you for PD, but I could be mistaken. Do you take it for PD?

kevowpd profile image
kevowpd in reply to PDsux_10

It's for PD.

Perhaps you should raise these issues with your husbands neurologist?

PDsux_10 profile image
PDsux_10 in reply to kevowpd

Oh I think I thought it was ambroxol we were talking about, my bad. We see the neurologist this week. Is it for dystonia that works in conjunction something to go with the levadopa?Cheers

puretone profile image
puretone in reply to PDsux_10

I wouldn't think it would be too hard to have prescribed by a neurologist or even GP, it's PBS listed with it's major use being PD. My partner hasn't taken it but it's use is common enough.

PDsux_10 profile image
PDsux_10 in reply to PDsux_10

I was thinking of ambroxol not amandatine. My mistake

puretone profile image
puretone in reply to PDsux_10

I'm a bit wary of the 99% mucuna extract if it's the Chinese white powder variety. My partner had a bad run with it a few months back, powerful all-body tremor, terrible insomnia and total inability to settle in bed. She ended up asking her neurologist for a Madopar script instead of mucuna and though, far from perfect (still messing with dosage) there are some solid improvements. People rate the Barlowe's 40% highly but it's extremely hard to obtain in Australia and the under 10% powder and 15% Now caps would be coming out of your ears before you reach a satisfactory dose.

PDsux_10 profile image
PDsux_10 in reply to puretone

Oh no he doesn't use the one from China, he uses nutrivita and barlowes from the States. The products are great and he had lots of success for the most part. He has tried the madopar too,but says he doesn't notice any difference. But literally this week, he takes his levadopa tincture and gets the twisting. It's very unsettling for him. That's why we cut it down to barely any levadopa and he just puts up with strong tremor and stiffness. I will ask Dr re symmetrel.

kevowpd profile image
kevowpd in reply to PDsux_10

As far as I know the possible implications associated with taking larger quantities of pure ldopa (I.e nutrivita) are not well understood as they have never been comprehensively studied.

PDsux_10 profile image
PDsux_10 in reply to kevowpd

Well, I know he was doing well enough for the most part and I also know that any form of levadopa can lead to dyskinesia dystonia, but I didn’t think it would happen overnight and so intensely. I think we are just gonna take the lower dose and he will have to put up with the tremor etc more. It's unfortunate but it is what it is. I just feel bad for everyone who struggles with this affliction. Thank you for you reply.

kevowpd profile image
kevowpd in reply to PDsux_10

Ok.

I would ask the neuro about DBS.

PDsux_10 profile image
PDsux_10 in reply to kevowpd

Hi, I have before and he kinda laughed because he knows that my husband is not taking the rx drugs and said if he isn't wanting the gold standard drugs, why would he want DBS? I guess he has a point. I am going to ask about FUS this time and see if I get the same response.

Levod profile image
Levod in reply to PDsux_10

Hi PDsux:

Your husband could be experiencing "wearing off dystonia and dyskinesia".

This could happen if he wears off before he takes the next dose, and this could be greatly impacted by what you eat (eg, protein), how much you eat, and how well you digestive system is working. If this is the case, it could be his "honeymoon period" is ending.

Also, the "wearing off dystonia and dyskinesia" could be made worse by being overmedicated.

So you should switch to real meds, so that you get the carbidopa and know for certain how much levodopa he is actually getting.

PDsux_10 profile image
PDsux_10 in reply to Levod

Hi, Yes we thought that too, and usually he takes everything on an empty stomach and sure enough 45 mins later he gets twisty and then when it's two or three hours after he dosed, he starts to twist again. So I think he gets peak dose and low dose issues, which is rare apparently and very hard to figure out what's causing it or how to minimize it. This is why we cut way back and hopefully he can continue to take some form of levadopa to help with the tremor, but he's nervous to do so now. We will ask Dr re meds again, but he's still not a fan he's tried madopar and says it's not good. Thank you for your comment.Cheers Mel

Cons10s profile image
Cons10s in reply to PDsux_10

I’ve asked Dr. J at Sonimodul in Switzerland and they’re not critical about which form of ldopa you’re using. There interested in dose.

PDsux_10 profile image
PDsux_10 in reply to Cons10s

I'm not familiar with thus Dr. Are they treating patients with various forms of levadopa?Cheers

Mel

Cons10s profile image
Cons10s in reply to PDsux_10

Sonimodul is where they treat Parkinson patients with Focused Ultrasound . It’s the only place in the world that treats both right and left hemispheres. FUS PTT, relieves tremor, bradykinesia, rigidity, dystonia and dyskinesia. From 60 to 90% on many patients with an average being an overall 85% symptom relief. To qualify Ldopa must not work as well anymore.

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

If it was almost overnight it might be something else. Surely it couldn’t come on so suddenly?

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Well its def gotten worse over time no doubt. He suffered several months ago, but we had increased his levadopa back then and had to stop cold turkey when dystonia showed up and then we slowly got him back to his usual dose, which has been working great until just this last week. Now his usual dose is bringing on dystonia dyskinesia every time he takes it. That's why it's so upsetting. And we tried to increase the dose to help, fearing it was happening because he was getting less on time. This made it worse, so hence why we cut down on his usual dose. But he suffers with his tremor now like crazy. It's a catch 22 me thinks.Cheers

Mel

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

We haven’t had this problem yet and I’m not in any way an expert but what you just described sounds like the normal dose that was working is just a tiny amount too much so is gradually building up to too much. How finely can you reduce dose? Is it in capsules or spoonful? Can you reduce by half the amount? Or if it is measured in a spoon do you weigh it? Could the dose have gone up due to a slightly stronger batch or denser powder? If you are spooning it could you weigh it on a jewellers scale instead to make sure the doses are identical?

If he is like my husband he is so sensitive to doses and side effects of drugs are very much like the symptoms the drug is supposed to treat so knowing whether it is too much or too little is tough. Batches can be different too. Sometimes if I am about to go onto a new bottle or batch of something I hold a bit back of the previous bottle so if the new one seems to work differently I go back to the last of the previous batch to see if comes right. Then if it does I put down the change to a difference in the batch rather than the difference in his symptoms.

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Yes, we have tried that. I just think the meds no matter how much or how less messes with him and somedays its great and the next day he does exactly like the day before and it's just awful! It's never consistent sadly

Despe profile image
Despe in reply to PDsux_10

mucunaparkinson.com/propert...

Our Vanderbilt MDS quoted "Less is more." He suggested that if my husband takes MP, he could take it with Carbidopa to help with higher absorption of Levedopa.

PDsux_10 profile image
PDsux_10 in reply to Despe

Yes, we have tried that. I just think the meds no matter how much or how less messes with him and somedays its great and the next day he does exactly like the day before and it's just awful! It's never consistent sadly😥

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

He must be an “overreacter’ like my hubby. I had his DNA analysed and he has blockages in the pathways that process seratonin and dopamine. That must be why ssri don’t work for him. He also has blockages in the vitamin d and b pathways and his liver detoxification pathway which means he processes pharmaceuticals slowly. I have found this analysis explains his various problems and is very interesting.

Is your husband on any antidepressants?

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Hi, Laj, How do you get DNA analyzed and specifically for serotonin dopamine? All his blood work comes back great, once he had an enormous amount of vit b6 and he doesn't even take it. That was so weird. Anyway, he might be sensitive like you say, I just know it's a constant juggling act! He is not on any antidepressants. He takes b1, b3, vit c, curricumin, magnesium, melatonin, manitol, fish oil, and a handful of other supplements. I just wish the mucuna would continue working for him, I'm sad that the dystonia has become so unbearable 😞 Thank you for your comments.Cheers

Mel

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

He went to a naturopath. First he got DNA tests run through ancestry. Com and 23andme then the naturopath doctor ordered a report from opus23 which produced a detailed report telling him which gene mutations he has, which foods , supplements. and drugs to avoid or take more of. Also a chart showing enzyme pathways that are blocked:

Genetic test chart
PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Oh ok, my husband saw a naturopath but literally nothing was done to help him. That chart you got is pretty thorough. I suppose we could try a different naturopath, but it's very expensive in Australia! Thank you again for you comments.Cheers

Mel

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

Yes it was quite expensive but I have found it helpful. You can’t order the opus23 report without going through an authorised person though. It is to stop you getting diagnosed online with some distressing condition with no appropriate counselling . Eg the braca1 gene etc.

You can order the 23andme file and the ancestry.com file yourself though at about $100 a pop. It is a big text file and there are some free online programs to analyse the most common SNPs but they won’t go into as much detail as the opus one does. Maybe there is an online clinic in the US that can do it for you.

Otherwise I have put the files into excel and when I research something and find reference to a gene snp related to a condition I do a search on that in my file. Eg with the ambroxol it is being used for Gaucher’s disease which has specific snps. I was able to check whether he had those, and he doesn’t. He still takes ambroxol at a low dose ie it’s normal dose rather than the clinical trial dosage.

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Wow you are really impressive! I don't think I would be able to cross reference his genes and allergies if we ever got a chart done. He doesn't want to do DNA sites, so I will have to give that a miss. As for the ambroxol even a low dose do you think it helps? I have some 30mg, but he hasn't tried it yet. We are doing the madapor strictly for 3 weeks to comply with the neuro, but so far he's not loving it. Says his hand is useless now. With the mucuna he gets better control of tremor and stiffness, but then the dystonia dyskinesia like I mentioned in the original post is hard for him to contain. The madopar seems like he gets less of that at least 🙏Cheers

Mel

LAJ12345 profile image
LAJ12345 in reply to PDsux_10

I don’t really understand it fully but it does seem that the blocked orange cells above in the chart seem to explain things that have gone wrong with him. And why he overreacts so badly to all pharmaceuticals. He reacted badly to levodopa too both Kinson (like sinemet) and madopar which made him stiffer and agitated. The 1/4 twice a day of Kemadrin seems to have helped that I think.

I’m not sure if it was the ambroxol that helped as he started a few new things at once but he seemed to turn a corner and feel much better quite suddenly and is still going well months later. Here is a link to what he did if you are interested if you didn’t see it when I posted it.healthunlocked.com/cure-par...

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Thanks for the link. I'm def gonna have him try ambroxol low dose, but maybe starting it in Jan. I just wish it wasn't so hard! Thanks againCheers

Mel

I'm not sure if you're in the states but supplements are not regulated here so the first thing I would do is get the supplement analyzed. You can't really know what's in there if they're not being regulated. I find the prescription carbidopa levodopa much safer and much easier to be consistent with. Also the carbidopa alleviates any nausea I might have.Amantadine is a great deal of help as we progress with PD. I have taken it for many years without any untoward side effects. But that seems like the second step as finding out what he is taking, exactly, would be the first.

I don't know what your resources are but perhaps a different neurologist that you have more confidence in would also help. I find my neurologist to be a priceless resource but I always listen to my body and do my own research. We are all the guinea pigs or mice for our particular PD.

PDsux_10 profile image
PDsux_10 in reply to Enidah

Hi, My husband has tried madopar, but says he gets better relief from the nutrivita he's been using and I will support whatever he says works for him. But now things have changed and who knows he just might need less levadopa and that's fine by me. We see the Dr tomorrow and hopefully we can come to some arrangement. Do take the Amantadine wherever you need it, or is it something once you start it you can't stop it? Thanks for your sound advice.Cheers

Mel

Hi. Sorry I cannot help…my husband takes levodopa but does not have this system only gait freezing. Hope the consultant can help you urgently. Anita

Hi, Thank you fir your kind words. Yes I hope the Dr can assist him too . He doesn't want to add more meds to his regime, but I think the dystonia dyskinesia is even more unbearable for him at the end of the day. Here's hoping for a miracle for everyone suffering from this disease!Cheers

Mel

After 4 years my husband seemed to need more C/L (Madopar) but increasingly gave him both dyskinesia and more dystonia. We changed Neuro and he added in Rasagaline, which stops breakdown of dopamine and Amantadine to help with dyskinesia. This seems to suit my husband and with a few tweaks managed to cut down on C/L. I think it would be a good idea to get advice from a Neuro to help you get the right balance of meds when C/L causes dyskinesia.

Our GP supported the change of Neuro and it was a good move for my husband.

PDsux_10 profile image
PDsux_10 in reply to Zella23

H, This sounds like what might be happening to my husband and def gonna ask the Dr about it tomorrow. My husband dreads adding more meds, so it might be tough convincing him. I totally understand why he's concerned I don't blame him frankly. But it's good to hear that it works well for your husband and this gives me hope. Thank you for sharing.Cheers

Mel

Zella23 profile image
Zella23 in reply to PDsux_10

Although my husband has added in the other drugs he takes less pills altogether as he’s cut down on Madopar. Perhaps look on it as not just adding more drugs just more suitable meds it’s all about what works for him and we’ve found it does change as time goes on. He has taken B1 for a couple of years and for the past year he’s also been using a red light hat. Comes from Australia. Lots of info on here about it on HU if you search. If you look at my profile you ll see lots of info about it.

Good luck 🤞

PDsux_10 profile image
PDsux_10 in reply to Zella23

Hi, I like your philosophy thank you. He does the B1 and redlight hat etc. He does it all really, so we just keep on keeping on. The Dr insisted we just do madopar and we decided to give it a go for the next 3 weeks and if he hates it we will go back to trying to do it through mucuna again. The Dr would not give him anything for the dystonia dyskinesia so he just suffers. Too bad, I wish just for one day the Dr could experience this affliction. I don't know how they look at PWP and say, wow this is great stuff. It boggles my mind truly.Thank you again.

Cheers

Mel

Hi, I take Levodopa 100 mg+25mg Carbidopa (tablets by MSD). I am not 100% satisfied and shortly I will try Cannabis. I want to say that I was recommended to try Copaiba Essential Oil (very pure for therapeutic use) to be taked in combination with Levodopa in the initial phase ad then completely replaced but......(important) under medical supervision. The product is available almost all over the world.

PDsux_10 profile image
PDsux_10 in reply to Orsopardo46

Hi, Thank you for your comment. We are going to try the madopar only for the next few weeks and see if it makes a difference. We can't get cannabis here in Australia. I have read stuff about capaiba oil, how do you take it though just oil drops under your tongue? And how much and with every dose of madopar? Thanks again.Cheers

Mel

I am having similar issues ,, have been taking 40% Mucuna for 5 years and has worked very well until a couple months ago , I’m trying different dosages and added sinemet (c/l) so far and not too bad .. not sure what’s next. I am very sensitive to meds of any kind

PDsux_10 profile image
PDsux_10 in reply to LPalmer

Hi, Yes it's very worrying when it doesn't work like it used to. I'm glad you are finding a combo that is helping though. I think my husband is sensitive too. It's just impossible to keep on top of it these days. I'm hoping that madopar will work for him since the Dr yesterday insisted we do only that and he feels my husband will benefit from it, so only ime will tell. My fingers are crossed it will be manageable from here on out. Thank you again for your comment.Cheers

Mel

Dear pdsux,Have you considered trying a very small amount of carbidopa/levadopa say 10/100? magnesium?

Your husbands dystonia sounds rough - so sorry.

Kind regards,

Moondaughter

Hi Moondaughter Yes he was trying a half madopar with the mucuna, but the dystonia dyskinesia no matter what dose he took was out of control. So after seeing his Dr yesterday, he insisted we do madopar only and all would be wonderful. I'm trying not be sarcastic, but I'm sure that my husband probably has become ultra sensitive to levadopa and that's why the dystonia dyskinesia has come on with a vengeance. And I just don't see how madopar only will be any different, but I'm hoping the Dr will prove me wrong.

Thank you for your comment 🙏

Cheers

Mel

I am sorry to hear this. I had similar issues after taking 4/5 years of carbidopa/ levodopa’s. Side effects of dyskinesia/ dystonia kicks in & it became unbearable to extent Neurologist asked me to consider DBS. I went for DBS in Nov 20 and it was a success. I got my quality of life back & no longer has dyskinesia/dystonia. Hope this helps!

PDsux_10 profile image
PDsux_10 in reply to kksim

Hi, Thank you for your kind words and so glad you had successful DBS. My husband is not open to surgery at this time, but your success is so encouraging. We are going to just do madopar ONLY since the Dr insisted we try it. My fingers are crossed hoping it will help him like the Dr insists it will. I'm trying to be positive. I told the Dr it's like watch a wounded animal writhing in pain, how am I supposed to just sit back and watch? He has no answer other than madopar. Makes me crazy to be honest with you. Thank you again for your comment.Cheers

Mel

Sorry to come over as a big Know-all but have you tried doing the fast waking to create more GDNF , which repairs the damaged brain cells and reverses the progression of Pd? SE the Mayo Clinic article healthunlocked.com/cure-par...

I don't understand the underlying hostility towards the rx meds or the neurologist. How are they supposed to help you when you eschew their advice and go and do your own thing with a largely unregulated supplement you bought online?

Well, not hostile to the Dr in person. I get where they are coming from and we are doing what he told us to do to the letter starting today. Fingers crossed you and the Dr are correct. As for supplements, my husband and I trusted a more natural approach to this bs disease and I know we're not alone in this, esp on this site. Thank you for your comment.Cheers

Mel

kevowpd profile image
kevowpd in reply to PDsux_10

There's nothing "natural" whatsoever about a 99/100% ldopa powder. Roberto Cilia has papers online about preparing mucuna that could actually be considered "natural".

PDsux_10 profile image
PDsux_10 in reply to kevowpd

Well, it was without the carpidopa which we liked and we used the brown mucuna as well. But the nutrivita pure, was the best product we found. Anyway, you don't have to try it I'm not trying to tell people to use it. I'm just saying for the last several years it's been great and now that things have changed with the dystonia etc we realize we need to find a way to make the dystonia dyskinesia go away and hopefully madopar is the magic pill. But the rx drugs only prolong the inevitable as well, let's not not pretend it doesn't. The rx drugs aren't pure either. Just sayinCheers

Mel

Many PWP take mucuna pruiens because it is a natural form of levodopa so it must be better than pharmacy obtained carb- levo (Sinemet). Face it mucuna is a supplement OTC product. You do not know exactly how much levadopa it contains. When I take 25/100 mg SINEMET I know I'm taking 25 mg carbidopa and 100 mg levodopa.

For the 3-4 months I've been dealing with severe dyskenesia, probably due to 10+ years taking Sinemet. I called my Neuro, he advised me to cut back on my Sinemet. We reviewed my dosing- I was taking one 25 / 100 mg Sinemet continuous release and one 50 / 200 mg extended release. He cut my 100 mg tablet in half. I dose every 3 hours. Old dose was

8 X 300mg = 2400mg daily. New dose is

8 X 250mg = 2000mg daily. Dyskenesia is often caused by too much levadopa. Smart man my Neuro.

Give it time - took me 2 weeks. Change only one variable at a time.

I am so glad the medication is working for you. I hope one day my husband will have some relief from this ever changing affliction. Thank you for your comment.Cheers

Mel

Hi Mel, i posted a while ago about a fairly new med called ONGENTYS. You didn't say if your hubby was having freeze ups suddenly and without warning. ONGENTYS was developed specifically for PWP who encounter this condition. It stopped my freeze ups entirely. It enabled me to cut back on my Sinemet. It does have its drawbacks. - expensive and it may increase dyskenesia. Gocovri ( extended release Amantadine) stopped my dyskenesia. I now take. One 50 mg capsule Ongentys and one 68.5 mg capsule Gocovri at bedtime and one 68.5 mg Gocovri at 11 am. In less than two weeks I was sleeping through the night. Good luck Mel. Give it time. Follow your Dr advice. Remember only make changes one at a time.

Thank you for your reply and I will look into ongenty. My husband doesn't freeze, just has tremor, slowness, stiffness,lots of pain, but the dystonia dyskinesia is the worst for him so far. He is trying to do the drs advice, but for some reason the Dr doesn't suggest amantadine. I also mentioned botox for his foot esp when it practically does 360 rotations, but the Dr ignores this suggestion as well. It's difficult to navigate this disease and these drs seem like they have very few tricks. Hope you have a great start to the New Year.Cheers

Mel

Getting the right meds, med strengths and dosing schedule is not easy. You say you cut way back on his meds. Did you do this on your own, or with your Drs advice? Your Hubby needs a certain amt of CL to function. Change only one thing at a time and give it time. Your Dr is the most knowledgeable of your Hubby condition, if he can't instill confidence in you, get another who can a Movement Disorders Neurologist.

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