Selegiline and Zandopa: My neurologist... - Cure Parkinson's

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Selegiline and Zandopa

LauraYu profile image

My neurologist prescribed me selegiline a month ago and It helped me with tremor and movement. I also take Zandopa and sinemet. Yesterday 1.5 hours after taking zandopa, I started having severe headache, and my blood pressure raised to 225. I also vomited 4 times. It calmed down after an hour and blood pressure came back normal. Today after dinner similar situation happened again, right after dinner (2 hrs after taking zandopa) my blood pressure went up to 215, and after an hour it came down normal.

I am not sure if it’s the food I had during dinner caused all this, or it’s the combination of zandopa and selegiline caused the sudden increase of blood pressure. Has anyone taken selegiline and zandopa together? Thank you in advance! Laura

37 Replies

Original comment deleted in view of additional information.

Levod profile image
Levod in reply to park_bear

Hi Laura,

When I started Selegiline I got a headache and elevated blood pressure. I was already taking c/l at the time. I stopped taking the Selegiline after that. It could have been exacerbated by anxiety (have you read the side effects and interactions of Selegiline!).

As far as Zandopa is concerned that is an unregulated macuna pruriens supplement, right?

LauraYu profile image
LauraYu in reply to Levod

Yes, I’ve been researching zandopa ingredients, it is really just macuna prurient, which is not supposed to cause this issue, plus I have been on zandopa/ sinemet for 5 years, and I have been ok with it. I am really lost now. Selegiline works well for me, I can move now and it didn’t seem to have any side effects.

My body weight is only 110 ibs. Maybe the standard pd dose of selegiline is too much for me?

Levod profile image
Levod in reply to LauraYu

Zandopa contains levodopa, right? I personally wouldn't trust any old source of levodopa. This is a "serious" drug. I can't believe people are allowed to sell this stuff. How much levodopa does the Zandopa contain? Are you sure? How much c/l (Sinemet) are you taking?

Levod profile image
Levod in reply to Levod

Sorry, I got off track there. I wanted to ask, if selegiline works so well for you, why are you also taking c/l + mucuna pruriens

LauraYu profile image
LauraYu in reply to Levod

Selegiline helps, but is still not enough to make me fully functional. I feel I just need a little extra levodopa supplements so I can walk properly. I tried taking just sinemet (25/100 mg)with selegiline, I can only function 1.5 hours, but if I use the combination with zandopa, it works for 2.5 hours. I am sighing here, can it be more complicated than this? Lol

park_bear profile image
park_bear in reply to LauraYu

Important to be aware of the difference between immediate release and controlled-release Sinemet. Same goes for the generic versions. Details here:

healthunlocked.com/cure-par...

LauraYu profile image
LauraYu in reply to Levod

I am taking very small dose of zandopa and sinemet now, I am only taking 1/3 spoon of zandopa and 1/8 sinemet 3 times a day. I used to take more before, but with selegiline I am able to reduce zandopa dosage.

Levod profile image
Levod in reply to LauraYu

How much levodopa is there in a 1/3 spoon? You are taking 1/8 a tablet of c/l?

Anyway, I would ditch the Selegeline (do this slowly if you have been on it for a while) and the Zandopa, and find the c/l dose that gives you good releief. Do this by titrating up from 1/2 c/l tablet (ie, 1/2 of 25/100 mg) up to 2 1/2 tablets. See the Ahlskog book for details.

LauraYu profile image
LauraYu in reply to Levod

1/3 spoon of zandopa is only 2.5 g, actually I have never heard of anyone taking this small dosage. With selegiline, my balance is so steady, really don’t want to give up on it. I am going to struggle with it a bit longer, by adjusting either selegiline or zandopa, to see if I can survive. If not, I guess I have no choice but to stop selegiline. Thank you for your advice, and your time and effort to help me! I greatly appreciate it 🙏🙏🙏

Levod profile image
Levod in reply to LauraYu

Are you sure?

2.5 g of levodopa is a lot (i.e., 2500 mg)...

park_bear profile image
park_bear in reply to Levod

According to this:

ncbi.nlm.nih.gov/pmc/articl...

2.5 grams of Zandopa, item number six, would contain approximately 120 milligrams of levodopa. A typical concentration of levodopa in unconcentrated mucuna bean powder.

LauraYu profile image
LauraYu in reply to park_bear

Really?😇how come I heard people talking a full spoon or two spoons of zandopa each time? If 2.5 g of zandopa transfers to 120 mg of levodopa, then plus the 1/8 sinemet, I probably took too much. Maybe that’s why with the addition of selegiline, I am getting high blood pressure. Too much dopamine

LauraYu profile image
LauraYu in reply to park_bear

I used to take 3/4 spoon of zandopa each time before, plus 1/4 sinemet. Unbelievable

LauraYu profile image
LauraYu in reply to Levod

Park_Bear is right, my 1/3 spoon of zandopa is equivalent to 120 mg levodopa. Strange, I used to take 3/4 spoon of zandopa 4 times a day , without any reaction. Actually it only lasts for 3 hours each time. It seems selegiline has huge impact on me

LauraYu profile image
LauraYu in reply to Levod

I am thinking of stop taking selegiline. Before I talk to my neurologist, can I ask when you stopped selegiline, what medication did you switch to? Just want to have some ideas before picking up the new drug. Thank you.

Levod profile image
Levod in reply to LauraYu

There was no "switching" involved. I was taking c/l before, during, and after I tried selegiline.

LauraYu profile image
LauraYu in reply to Levod

Thank you!

LauraYu profile image
LauraYu in reply to park_bear

My regular blood pressure is 110/70, and I have never had this issue until selegiline was added. I think the trigger is selegiline…….. I suspect seretonin syndrome. Selegiline extends the effects of serotonin, and zandopa may also have serotonin ingredients

park_bear profile image
park_bear in reply to LauraYu

In that case I have to agree, given that it started with selegiline. Selegiline is not an essential PD medication so doing without is no great loss. In some cases, particularly for long term users, a taper is appropriate rather than quitting all at once. Also, effects cam persist for a couple of weeks.

If your BP is sky rocketing, it sounds like serotonin syndrome. Very, very serious. See or call your PD doc right away.

LauraYu profile image
LauraYu in reply to Raphaekg

I went to emergency, by the time I arrived,my blood pressure was 187. It’s hard to believe that the doctor said that I shouldn’t check my blood pressure while I was feeling sick 🙄he said my blood pressure would be high because I was panic, other than signing I am really speechless. Anyway he still ordered ecg, ct, and blood work, everything was normal so he sent me home to see my neurologist lol

Yes I agree with you , I think it’s serotonin syndrome. I reduced my zandopa dosage to 1/4 spoon, and sinemet to 1/8 yesterday, I also cut selegiline from 10 mg to 7.5 mg. I was ok yesterday, let’s see what happens today. Thank you for your advice!

Raphaekg profile image
Raphaekg in reply to LauraYu

I hope that you find a different physician. Was it your PD doc?

LauraYu profile image
LauraYu in reply to Raphaekg

No, he is the doctor at the emergency room. I don’t think he has necessary knowledge of PD. This is the sad part about those emergency rooms, I believe they put the just graduated doctors in hospital emergency to learn experience first, after that they will eventually become family physicians or specialist.

Raphaekg profile image
Raphaekg in reply to LauraYu

Laura, YES, watch out for ER docs! One literally killed by Dad (who also had PD) but administering Haldol to him. Haldol is deadly to people with PD. He could no longer swallow AT ALL. Since he had advanced directives that indicated no tube feeding, he died about a month after that. The ER administrator and hospital took ZERO responsibility.

I am so sorry about what happened to your Dad😢 these unbelievable things actually happened in reality, sad! I used to believe doctors, medications, hospitals, now with PD I hold a different option. As patients, we have to rely on ourselves to make wise decisions.

Well it sounds like either the xandopa itself, or the combination with these meds together with the zandopa create an adverse reaction and I don't think when you have that kind of hypertension that it is a safe situation at all and I think I would immediately quit report it to the neurologist and also report it any other doctor who knows something about combining medications and blood pressure, probably an internist, you need two opinions here, the last thing you need is a stroke secondary to that acute hypertension reaction, it's very dangerous because you can't turn the medication off once it's in you without emergency intervention and further medications to bring it back down, and in the meantime you are running the risk of a stroke. And yes, serotonin syndrome is a possibility but for all that matters is the immediate acute hypertension reaction that can stroke you out and turn you into an instant cooked vegetable and you won't be coming back from it either.

LauraYu profile image
LauraYu in reply to MarionP

Yes, you are absolutely correct. I have taken zandopa/ Sinemet for 5 years and never had problems. So it must be the combination created this hypertension issue. I did some research on ingredients of zandopa, other than its macuna prurient components, the rest is really just flavour base. The only explanation I have is either the zandopa dosage became too high because of the addition of selegiline , or it’s the selegiline itself caused the issue.

Over the past two days, I have reduced both selegiline and zandopa to see what’s going to happen. I still have some minor headache, if it doesn’t disappear, guess I will have to stop selegiline. Thank you for your advice, greatly appreciate it! Laura

MarionP profile image
MarionP in reply to LauraYu

Since mucuna contents and preparation are not guaranteed to be what you think it is, plus variability from different manufacturers and indeed within the same manufacturer, you really can't say what is in your in your mucuna batch though...(this is for all readers). ..because there are no such controls as there are in actual pharma-produced prescription pharmaceuticals such as your sinemet and seligiline...plus you may have some allergy to one or more of whatever the mucuna ingredients are in there, of which there may be many. With any such "supplements," there is no way to tell.

For example:

1. What is the "active" ingredient or ingredients... for two ingredients, the number of different combinations equation is 1x2=2...if there are three ingredients, the formula for number of variation combinations is 1x2x3=6. Let's keep it simple, say in the ground mucuna plant powder (fava bean), we'll say 3.

Thus the formula for the number of distinct combinations different for each other is: 2x6x3=36.

2. How much of each is in, what purity, potency, amount...the equations for the number of distinct combinations is 1x2x3x4...=24. But then add in pharmaco-kinetics and pharmaco-dynamics, which includes time of uptake, then half-life of the dynamics. That's 2 for each ingredient. Say two ingredients, to keep it simple: 3.

3.-4. What other ingredients are in there, fillers, flow-assistants, colorants, flavors, pill/tablets' themselves ingredients, buffers, etc blah.

Total unknowns of this simple illustration scenario: 5 . We'll say 5. Thus the new total number of different unique potential results is now 24x3x5=24x15=360.

5. Now lets add in one, only one, of your own unique, idiosyncratic personal machine attributes, say the amount of ingredient introduced that it takes your collective body reactions to go "over the edge". We'll call it x, and it is just one, so that will mean we just calculate 1x [total result of step 4], = yx. Thus, carrying on, 360 times x =360x.

6. The chemical body machine reaction pathways to result in an acute hypertension reaction are numerous, depending on things like what is or is not in your stomach, your underlying conditions, in what organs and how quickly various combinations are metabolized by liver, pancreas, kidneys, and what variable substances compete with those pathways and their various takeup rates, byproduct production rates, organ capacity under load, organ capacity in the presence of substance that compete for or inhibit those processes, what metabolites of the ingredients of the drug substances (active and non) are produced and their activity or non-activity, time to clear, etc. Formula result is a complete unknown...could be hundreds or more of different distinct results...but to know just the number of potential different and unique outcomes can't be calculated without accurate, reliable measures and controls. It would be then that number times the final result in 5 above. If we posit total, very simple and probably far below the actual number, that would now be 350x5xX, thus 1750x. That's 1750 different unique outcomes to have to play with to see where exactly the adverse or other bad effect sources from, and even then, we are assuming there is only one true route. This is what has to be figured out before someone like your doctor or you can say that the sequence of steps in the reaction formation chain leading to the result you experience is known.

Thus really it is important to stop and not worry about why exactly.

pdpatient profile image
pdpatient in reply to MarionP

Wow, Marion, you must be one heck of a math wiz 👏👌🤗

RKM

MarionP profile image
MarionP in reply to pdpatient

No, just basic science statistics/experimental design training, psychology in my case but science is science whatever the topic. Really an average topic for 1st or 2nd year undergraduates in science. Actually I pretty much sucked at it as a career ambition but learned it nevertheless. It came up in a conversation just the other day with a specialist at Mayo (we see them whenever we can, 7 hour drive but they've saved my life twice, cared for my family so well, my wife and father in law and step daughter and stepmom too), her heart specialist, who quoted a study to my wife about chances of a reaction she had and what to do about it, against an alternative that in questioning everyone realized that she'd had an allergic response to something in the same drug class).

Because I am so concerned to lose her someday too soon because chronic heart failure she was born with, when I asked "so were things about study size and longevity and generalizability, data quality, we're relying on just one study after all?" and he said "you know, good you asked, I don't know why but people really don't ask, this one was valid sample size, about 2500 patients from the intervention wing and the total was over 5000, and from international centers as well as in the US, but you know we didn't at first think we had an effect and were disappointed, from what we knew of the chemistry, that didn't make sense, so we started looking closer and found that a large swath of the data was from patients in Pakistan and Georgia (the country) and the relied on patient follow-up reporting compliance was unreliable, there were a substantial number of patients who didn't respond to the follow-up surveys at all and didn't come in for the post-intervention clinics that were in the sample, but they were still included in the data...and when we cut them out of the data as not appropriate to consider, the overall effect jumped up far into valuable to trust realm, and so yes, one study was, in my opinion for my patients, enough (usually association studies need a lot of replication), so I said "then you must have been operating at the mechanism level to be able to say one study is definitive, that's unusual," and he said yes exactly, and in this case, yes it is...and you know, nobody asks those kinds of questions." So I said "Then it's ok to feel good about this," and he said yes, in this case definitely. "Good if it was your kids?" "Yes."

So we said OK to the med switch, instead of having to consider something that had in the past also included something that could after a second time, good chance, turn into an adverse allergic reaction. Good decision all around.

But it was really just a basic question asking what did he think of relying on the study, since Mayo had been part of it (well, I wanted to check that too, wanted to see what he meant by "we," sometimes they don't mean literally, they mean "doctors and scientists everywhere." (I've found that if you treat every word they say as if it were truly gospel, and not some other word, you know, treat words like lawyers do, they are great at being intentionally literal with what they say and it's a good thing too, wish we all knew to do that). Got quite a lot back for a simple question, basically "what do you mean 'we,' and how good is this study to trust making a decision on?" Which is something anyone can ask, takes no special knowledge at all.

By the way, anyone want his name or my neurologists' (they give you more than one when they take you on, they "team it" as it were) as a referral I'll give it too because these folks, no matter the discipline or group of them, with clinics in several parts of the country, are happy to share and defend their decisions and reasoning and now in this electronic era I know that they are doing some forms of distance consulting and have clientele from all over the world. They are available to more people than you would think...and they don't care about this or that pressure, they just care to "get it right." Like for instance I just saw, purely by chance, this study notice about an experimental med that did some serious recovery in people with amyloid proteins in their picture (the relatively rare version, only 200,000 worldwide estimated, this in connection with heart problems, but you know, we here often are talking and concerned about amyloid placques and beta amyloid and neurofibrillary tangles of amyloid plaques in progressive dementia and we as PWP are not really so tangentially out of that picture simultaneously) and passed it on to him as a FYI, this is before he had her tested for amyloid herself and (thank God, I knew someone with that and they went into fast decline and dramatic, drastic agonal over a two year period, and enough to substantially blast their finances and his future as well) ruled her out when she had some symptoms that suggested a possible amyloid involvement.

You never know where some of this stuff is going to come from, and it's good to think of your doctor as if he was your next door neighbor or someone with kids in your school, they call it "serendipity." (they can't know it all, there's too much...often they are grateful for being treated as just folks sometimes).

LauraYu profile image
LauraYu in reply to MarionP

Hi MarionP, you must have either chemistry or science background to write such a professional summary of advice. I read it 3 times and still so much to learn. Please accept my sincere appreciation for the time and effort you spent to help me! Laura

MarionP profile image
MarionP in reply to LauraYu

Thanks kindly, as I mentioned all you need to do is ask questions.

No discussion here of food as the culprit, being as it happened twice right after dinner? Did something change in your diet?

MarionP profile image
MarionP in reply to MBAnderson

A whole new area of possibility.

LauraYu profile image
LauraYu in reply to MBAnderson

Actually my first reaction was, it must be the food. The two days that I had sudden high blood pressure, day 1 I had a half glass of pineapple juice ( dangerous), and pre- marinated BBQ ribs from Costco ( think it has some Mexican spices). Although I only had 2 pieces of ribs, I couldn’t even finish dinner before I started vomiting. I think foot was definitely a contributor. On Day 2, I learned the lesson, only had home made dumplings for dinner. The dumplings were made with pork, cabbage and shrimp. Same reaction happened, sudden spike of blood pressure, this triggered me to look for other cause. I think it’s zandopa.

For the past 3 days, I reduced both selegiline and zandopa, still have some minor reaction, but it wasn’t as bad. I found another thread on HU, someone else was taking selegiline and macuna prurients, also vomited. It’s either the zandopa dosage was too high, or zandopa contains something that interacted with selegiline . I think it’s serotonin. Between selegiline and zandopa, I choose to keep zandopa. I had compared between Sinemet and zandopa, zandopa has milder off symptoms, lasts longer, and stay in the body longer.

I am so glad to see you come back 😊😊😊the day I saw your note, I was so sad. People in this forum, although we don’t know each other, and likely we will never meet in person, but we are all connected by our PD fighting journey. Our hearts are together so we are stronger. I wish you best luck in recovery!!! Laura

No, RKM, just basic science statistics/experimental design training, psychology in my case but science is science whatever the topic. Really an average topic for 1st or 2nd year undergraduates in science. Actually I pretty much sucked at it as a career ambition but learned it nevertheless. It came up in a conversation just the other day with a specialist at Mayo (we see them whenever we can, 7 hour drive but they've saved my life twice, cared for my family so well, my wife and father in law and

father and step daughter and stepmom too), her heart specialist, who quoted a study to my wife about chances of a reaction she had and what to do about it, against an alternative that in questioning everyone realized that she'd had an allergic response to something in the same drug class).

Because I am so concerned to lose her someday too soon because chronic heart failure she was born with, when I asked "so were things about study size and longevity and generalizability, data quality, we're relying on just one study after all?" and he said "you know, good you asked, I don't know why but people really don't ask, this one was valid sample size, about 2500 patients from the intervention wing and the total was over 5000, and from international centers as well as in the US, but you know we didn't at first think we had an effect and were disappointed, from what we knew of the chemistry, that didn't make sense, so we started looking closer and found that a large swath of the data was from patients in Pakistan and Georgia (the country) and the relied on patient follow-up reporting compliance was unreliable, there were a substantial number of patients who didn't respond to the follow-up surveys at all and didn't come in for the post-intervention clinics that were in the sample, but they were still included in the data...and when we cut them out of the data as not appropriate to consider, the overall effect jumped up far into valuable to trust realm, and so yes, one study was, in my opinion for my patients, enough (usually association studies need a lot of replication), so I said "then you must have been operating at the mechanism level to be able to say one study is definitive, that's unusual," and he said yes exactly, and in this case, yes it is...and you know, nobody asks those kinds of questions." So I said "Then it's ok to feel good about this," and he said yes, in this case definitely. "Good if it was your kids?" "Yes."

So we said OK to the med switch, instead of having to consider something that had in the past also included something that could after a second time, good chance, turn into an adverse allergic reaction. Good decision all around.

But it was really just a basic question asking what did he think of relying on the study, since Mayo had been part of it (well, I wanted to check that too, wanted to see what he meant by "we," sometimes they don't mean literally, they mean "doctors and scientists everywhere." (I've found that if you treat every word they say as if it were truly gospel, and not some other word, like lawyers do, they are great at being intentionally literal with what they say and it's a good thing too, wish we all knew to do that). Got quite a lot back for a simple question, basically "what do you mean 'we,' and how good is this study to trust making a decision on?" Which is something anyone can ask, takes no special knowledge at all.

By the way, anyone want his name or my neurologists' (they give you more than one when they take you on, they "team it" as it were) as a referral I'll give it too because these folks, no matter the discipline or group of them, with clinics in several parts of the country, are happy to share and defend their decisions and reasoning and now in this electronic era I know that they are doing some forms of distance consulting and have clientele from all over the world. They are available to more people than you would think...and they don't care about this or that pressure, they just care to "get it right." Like for instance I just saw, purely by chance, this study notice about an experimental med that did some serious recovery in people with amyloid proteins in their picture (the relatively rare version, only 200,000 worldwide estimated, this in connection with heart problems, but you know, we here often are talking and concerned about amyloid placques and beta amyloid and neurofibrillary tangles of amyloid plaques in progressive dementia and we as PWP are not really so tangentially out of that picture simultaneously) and passed it on to him as a FYI, this is before he had her tested for amyloid herself and (thank God, I knew someone with that and they went into fast decline and dramatic, drastic agonal over a two year period, and enough to substantially blast their finances and his future as well) ruled her out when she had some symptoms that suggested a possible amyloid involvement.

You never know where some of this stuff is going to come from, and it's good to think of your doctor as if he was your next door neighbor or someone with kids in your school, they call it "serendipity." (they can't know it all, there's too much...often they are grateful for being treated as just folks sometimes).

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