In the last 2 weeks I have been experiencing the most extreme, intense leg and ankle movements in have ever experienced or seen. The intensity is so bad I can't sit in a chair and am worried my ankle will snap soon. It's starting to affect my back.As it's very hard to control these movements. I'm used to having pretty severe dyskinesia anyway but this is nothing compared to what I used to deal with. Any suggestions would be greatly appreciated. No changes have been made.
So I am lost as to what is causing this. But more importantly how to get rid of it
I've tried stretching.out the times between my c/l doses as well as modifying the dosage.
I take the following:
Mirtazapan
Vitamin C
Magnesium L-therotate
Magnesium citrate
Vitamin D
Coq10
Thank you in advance
Written by
YOParky
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You need to have your levels of vitamin B6 and vitamin B2 checked. At your level of levodopa consumption B6 depletion is a possibility. This can result in a vicious cycle of reduced levodopa effectiveness requiring more levodopa and leading to further B6 depletion. It can also lead to peripheral neuropathy and seizures. When you are able, please read the detail I have posted here: healthunlocked.com/cure-par...
And you could be starting into some serotonin syndrome.
Combining a dopaminergic with mirtazapine may be the problem, or it may be an accumulation of the mirtazapine over a residual threshold because of its long half life, or it could be that in the presence of mirtazapine you have a little too much l-dopa, in which case you need to choose which one is more important to you. In any case you may be now in an emergency state and figuring out those details should be part of a plan after you deal with the potential emergency.
It might not be an emergency but you don't know, and since an emergency is possible, everything else takes backseat and you get the to a doctor stat.
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In any case mirtazapine is pretty famous for causing a lot of problems and I had seen it myself in my career. Personally I think all of the tetra-cyclics are nasty stuff and I wouldn't go near them, mirtazapine nor trazodone nor any other tetra-cyclic. Personally I think they are crap...
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But I wouldn't wait around, I would talk to an MD in an emergency setting if you couldn't get to your original prescriber fast, and let him/her know everything, every substance you are taking, dosage and schedule, also whether you were taking grapefruit juice, and leave nothing out. .
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I might (doesn't mean you might, every case is different and I'm only speaking for myself) start backing off the mirtazapine, it has a relatively long half life anyway (20 to 40 hours, plus any active metabolites) meaning more than a day, so if you take it every day you could be building up a residual somewhere and that could be a threshold beyond which you are developing your symptoms, but there are potential risks with stopping mirtazapine completely, and the question is what to do right now because you could be starting some serotonin syndrome and if so then that's a "right-now" emergency you need help with from a doctor, you have the presence of a dopamine med and a tetracyclic, so the question of how much and when really should be talked with a doctor, kind of depends what you are using mirtazapine for so as to determine how valuable it is compared to the other meds and supplements you take, so first I would try to get to see someone immediately... that half-life is important, it may help with hypotheses about the timing of your symptoms since beginning mirtazapine... but really you need to be under a doctor's current and up to date supervision immediately due to the possibility of serotonin syndrome, I think and an emergency physician could determine whether there is a need to start you on something like a muscle relaxant or anxiolytic or even an anti-spasmodic, something to stop any potential seizure that might be building.
0Good it also occurs to me that what someone else said above, about being highly sensitive to your LDopa is also possible. These two influences are combined at the moment which makes it difficult to just speculate on which or what combination of possibilities exist. Once you know and your doctor knows that you are stable and non-acute, then you can start the process of carefully exploring the single individual possibilities looking for both the good effects and the bad and then be able to weigh them and then proceed further with the investigation, with relief being the primary goal as well as freedom from complications.
Also once you are stable and perhaps needing something for your core disease symptoms and they restart you with LDopa, they may want to pair it with something that can attenuate any excess sensitivity that gets expressed as dyskinesia or spasms. This might mean looking into what are more traditionally but not necessarily logically considered to be psychiatric medications.. actually the original is and thought about what mirtazapine was supposed to apply to before people started thinking about using it for PD... It was originally intended for use as antidepressant and maybe sleep aid. But you know at least two and maybe three of those four cyclic rings are also benzene rings. Benzene as in Benzedrine, or Bennies. That's not something to calm you down is it? .
But you know there is a crossing or nexus or overlap, whatever the word is that the world of dopamine involves, in both psychiatry and neurology. Get their experience and expertise with meds common to both may be different and therefore their relative experience, ideas and even competencies May differ depending on which side of the medication tree, that is, Parkinson's on the one side, or mental illness on the other side in psychiatry... really this difference should be considered artificial and I think in time the concept of psychiatry and neurology may come to be taught and practiced as the left and right hands of the same thing, maybe even "neuro-psychiatry." But in practice it often or typically is not yet done so you have to make friends with both animals.
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The thing is that the fields of neurology and psychiatry are very distinct as one neurologist, who happens to be a researcher up at mayo, pointed out to me one time when I happened to remark "but you guys have the same board of certification so I assume there must be commonalities and crossovers between your fields..." And he said back to me "no they are very different specialties even though we are certified by the same board called "the board of psychiatry and neurology." And does it happen this was in the context of a neurologist having to consider someone who also has a service provider and diagnosis in psychiatry. I said " what can you do the psychiatry end too?x he said no, I'm a researcher and neurology and I practice but really these are distinct fields. I don't know what they know in psychiatry. I asked him x so is this because when you're actually an intern, you get about 6 weeks worth of psychiatry and that's all, and it rotate to another specialty and that's what your internship year is." And he said " sadly yes, because we can't know it all it's a specialty after all there's a lot." So I had to take my results back over to psychiatry and get the two of them to work together because they had medication needs in common. (I also found this in my own practice because as a psychologist specializing in psychiatry there was constantly the need to engage in neurology which came out of a different specialty). That's kind of like the difference between oncology and cancer surgery... They definitely don't and can't do what the other does, at least they don't want to and they don't want you assuming that they can either. Just ask your oncologist sometime if he wants to do your cancer surgery or vice versa... Or your cardiologist to do your bypass or heart surgery. And there are other reasons for that too. One of them is ethical... I want to defer to somebody who really knows that end of the business because that's where we'll get the best service for you and maybe the best chance for a good outcome. And of course another example is the practical side: if I spend too much time consulting with a specialist in a different area, that will cut my earnings in half. In the US that loss could at the top be 1-2 $Million or more.
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Anyway it may take a bit of time and effort and trials finding someone who is comfortable in the world of both since dopamine is definitely in the world of both and some might hold that psychiatrists are more comfortable in the world of a typical antipsychotics and typical antipsychotics for that matter, when they are looking at their side effects that are actually dopamine related side effects like dyskinesia. That's why I often try to get people to find a psychiatrist and a neurologist both were willing to actually talk to one another and confer with each other about your case, drawing on their particular but distinctive experiences and familiarities with the what really ought to be a common field where psychiatry and neurology meet.
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Okay sorry to ramble on here endeth the history lesson. Best luckn
You MarionP sure are a wealth of knowledge and present it in ways that make sense; I wish i could touch on everything you mentioned but these hands have small windows of time for functionality before these legs start trying to dance! They have a mind of its own i swear. I don't hear any music! Lol. Funny...not funny. In my 17 year relationship with PD I have learned to make humor out of what this crazy unique disease brings. Ok, back to the serious stuff..
I would consider myself sensitive to c/l because every time I take a pill, whether it be a 1/4, 1 /2 , 1,2 or 3 within minutes I start having dyskinesia. Which I understand "they" say it's because I'm over medicated. But I beg to differ at least in my case because it could be my first dose of the day after a long weekend of being c/l free. To me that is not over medicated. I've had a nurse at an MDS office argue with me how I was way over medicated just by seeing me walk with dyskinesia. When in fact I was on my first dose of the day! I truly believe the industry has and is intentionally brainwashing people on not accepting other causes of symptoms/side effects. I could write a book on it! What their motive is beyond me. Or maybe its me being Mr conspiracy? That's for another post/convo.
So, I'm sensitive to c/l right off the bat within minutes of taking a dose I begin to have dyskinesia. At times my tremors start acting up but never both dyskinesia and tremors ; it's one or the other. 20-40 minutes after taking a dose i rarely see improvement and the dyskinesia continues to worsen in intensity and if i have not taken another dose by now the feeling of full body tremors start surfacing. Which is THE worst because it's rooted straight from my spine and travels to all 4 limbs. I've been told it looks like I'm having a seizure. Not the time looking for sympathy or pity, just painting a picture of what's happening.
So, now i've taken the second dose 20-30 minutes after the first dose and most of the time there will be no improvement whatsoever..until I eat a donut or something similar. It has to be textured like bread and contain sugar. And yes I get it sugar is a no-no but that is what i've found to work for me so until I find a healthier alternative Little Debbie is my best friend. Which leads me to the gut. Just as you expressed how important it is to have crossovers in neurology and psychiatry i feel the same goes for neurology and gastroenterology. If I mention anything about absorption to a neurologist/MDS they have either said something obvious or dodge it. My current MDS says that my body just requires more c/l compared to most other patients. In other words i think he's saying i have poor absorption to c/l. Which i agree but when i take a dose and see dyskinesia within seconds of taking it..i dont agree. My intestines i feel are not healthy even though ive been told after a colonoscopy that theres nothing to be concerned about. Ever since I was a teenager I've always been constipated and never could figure out the root cause of it.
So, I have a donut and whalah..within a few minutes I'm a free bird..symptom free! Oh how I love and cherish these moments. Which usually only last an hour. Then the dyskinesia starts to creep and the cycle starts all over again.
Forgive me for being so lengthy it's my first night off Mirtazapan and I see no sign of getting any sleep in the near future lol
Yeah I get that a lot. Especially in the last 15 years when the lobbyists have won and there really is no accountability or continuity of care or ethics to know the best and give your best every time. Sad. It's not rocket science if I can grasp it, believe me. My experience also has been that there is a vast difference between what an NP knows and a PA does, in part because there is far more supervision of a PA and they also take their training a little more seriously and follow up on their own when they think they need to know more. I've known a lot of nurses and I really don't think that profession measures up as an independent prescribing practitioner. I know if we have any nurses online I will get a ton of static but the truth is the truth.
I had it very badly - six hours of dystonic convulsions a day ( 2hours after each C/L dose) but lower meds caused 24 hours of dystonic convulsions. I could not work, drive or walk. Mine went away with brain surgery Pallidothalamic tractotomy by focused ultrasound . Six years later I am still good. I tried everything else.
Yes seems to be some of us are just kind of like, I don't know what kind of analogy to think of but maybe some people have very fine hair and nails and complexions and other people have more heavy or developed hair nails etc. The difference between someone who is "high strung" and someone who is more staid is also a reflection of variations in their neurology and wiring. The amps and voltage have to match the gauge and resistance of the wiring, and so does the insulation. And maybe the way they are soldered together results in a lot of frays, grounding violations, short circuits and static. Sometimes I think I'd have learned a lot that's applicable by adding apprenticeships in being an electrician and an auto mechanic. The closest I ever got was shoveling coal in a a power plant and having an engineer as a roommate, which wasn't half bad, they're great at fixing things and don't do weird things or bug you very much, I recommend them.
Thankfully you found something that helped rid those episodes. And going on 6 yrs! You finally got your life back! They won't let me do the focused ultrasound because I would need bilateral and they would rather do dbs. Which I will never be in a good enough mental state to do.
I have severe RLS and nothing has ever helped it. What's also maddening is that my right foot gets dyskenesia really bad. Drs have tried all kinds of crap. Nothing really worked or was a stop gap short lived measure. Believe it or not tonic water calms the RLS a small bit but never long.
I'm so sorry for what you're going through. I don't know if Mirtazapan is causing your dyskinesia, but just to say, when I took it, after my diagnosis, it was great at first: great sleep, great mood. Then there was a stressful occurrence and I crashed. My dr. kept increasing the dose to the highest recommended (45 mg), but I got more and more depressed until I became suicidal and went to the hospital. I was taken off Mirtazapan, and am still on quite a few antidepressants (which don't seem to be working very well), but no more suicidal ideation.
As others have said, you should see your doctor asap. Also I believe fish oil helps dyskinesia. I would recommend working with the PD doctors at Seattle Integrated Medicine. They have been a great help to me.
Thank you for your input. I also had those thoughts as well after the early periods of it helping with my sleep and even assisting with tremors. It's mind boggling how it can do such great things and then cause bad. That happened when I was on clonazepan also
my guess is also Mirtazapine. I had uncontrollable tremors when I was on it. Later on switched to citalopram, the whole body trembling got worse. So I stopped antidepressant completely.
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My Stack - Need Suggestions
levodopa or not levodopa 
Cause of dyskinesia? Parkinsons or carbilev? Advice about amantadine? 
new schedule
