I had a good appointment with my MDS today, i was pleased that she agreed with me that i need to reduce my levodopa level, rather than increase!I've been having increasing side effects -- biphasic dyskinesia with dystonia, and one episode of suddenly waking up gasping for breath, and compulsively researching small items i need to buy, cleaning (which has never been my thing) etc.
AND we talked about DBS. Yikes! My most problematic symptoms are not motor. BUT the roller coaster and side effects of the meds, absorb my whole life! Some side effects have started recently, the biphasic dyskinesia/dystonia is really disruptive.
She said for that reason, i'm a good candidate for DBS. And I'm "young" -- 68. 10 yrs diagnosed, 7 on levodopa meds.
Her one concern is that i have a long history of anxiety and depression (complex PTSD), for which i take multiple meds, and i'd need to work closely with a psychiatrist....
So i'm going to trial lowering my levodopa by baby steps...and start thinking seriously about DBS.
Since we don't know to what extent Medicare will cover Vyalev, and my guess is they'll put up as many roadblocks as possible, it may just make more sense to go ahead with starting the DBS process.
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You mention you were on more than one medication between the two doctors, i.e., psychiatrist and neurologist. I wouldn't rule out vialev just yet, but looking to that might be premature until you have ironed out some current interaction and or overlap issues, interaction of meds and interaction of doctors whose interactions (the doctors too) are not yet well managed unless they are working together with each other and friendly and available to do so. .
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It it may be that you are having complications by having multiple medications, there is considerable crossover between your psychiatric medications and your Parkinson mad, in fact it really is not a lot of clear boundaries and so if you have a neurologist plus a psychiatrist and they need to be working together and talking with each other with you, rather than you having one on one hand and the other on the other hand. There is Rx interaction of some sort, if you are on a psychiatric med and a Parkinson med, it's a virtual guarantee. So it may be premature to just jump ahead to DBS in case that DBS would complicate matters even more. DBS is something you can't undo. When you have two different prescribers involved, you are at a high risk of "bait and switch," meaning that their own prescriptions may cause risky interactions as long as they are not working closely and together and cooperatively, and this is something you must advocate for assertively with them. And it is a very important ethical matter to bring to their attention because they are supposed to do no harm nor are they supposed to lead you to think that if there is harm it is some other doctors doing when the two of them really should be working together and without conflict or isolation from each other. In fact the two realms in terms of medication are sufficiently close that to not be willing to do so is an ethical breach on both of their parts.
I agree -- the problem is at UCSF Movement Disorders Clinic, where I am currently seeing an MDS, the have only ONE psychiatrist, and with the exception of people having DBS, she will only see a patient atr the clinic ONCE OR TWICE to make suggestions, and then you have to see an outside psydoc. Did that, learned nothing I didn't already know.
The complications are pretty straightforward levodopa side effects. Dyskinesia (biphasic), dystonia. I have dystonia -- toes curling under -- as a PD symptom, but this is different. uncomfortable left quad, stiff ankle, jerky foot and/or toes turning up, not down.
With all due respect for you and your doctors, that's not supposed to be your problem, it's a continuity of care obligation on their part and should be theirs to solve, otherwise you may suffer iatrogenic harm. If that is not a word you have encountered before, it is a good one to look up. Up to you whether you're worth asserting for yourself to avoid being harmed by doctors with ethical problems in working together for your continuity needs. That's supposed to be why they have malpractice insurance and their oaths, which actually means something since you happen to be in the one state that cares about patients..
But that's up to you. , But: who will advocate for you if you don't? I wouldn't want to risk communicating to them, by your absence of bringing these things up, that you think you are less valuable a patient than they do, because they might just act in direction of that prompt, busy as they are, and having you to intervene and apologize for them in advance. Personally I think they do well enough for themselves that they don't need you to make excuses for them or substitute your own deflection based on the mix of medications, so that they don't have to answer such questions themselves, since after all they are the ones writing the prescriptions (which by the way means they are actually legally caring for you continuously during the time span of the prescription, so they aren't seeing you once, that's a myth, there's considered to be supervising you continuously, and you might want to remind them of that (in case you didn't know it yourself) so there is no "see one time and then dismiss" when there is a prescription involved... As long as you were under their prescription you are not discharged from their care! And they are the ones who are entitled to prescribe for you by law, you are not allowed to prescribe for yourself...not you and not me. Nor should you substitute in here for them as if you know more about the medications and how they are acting in you then they do.. so in your rush to take over determining medications and prescriptions for them on their behalf, which seems to be what you're saying, which medical school did you graduate from again? Which boards certified you? Hope that DBS is a magic pill in that case. Believe me before they start on it, they will make sure that you have signed all the waivers of liability. Are you prepared to ask the same of them?
Or if you're worried about bringing the whole thing up to them at all in the first place, let me make it easy for you: show them each a copy of my responses to you. Then you can blame me if they think less of you or might unconsciously punish you.
Because UCSF has only one movement disorders psychiatrist, and one in training, they can't cover everyone. Should they have more on their team? Of course, but there just don't seem to be many available, much less good ones.
All of my doctors ask at the start of each appointment if there are any meds that have been aded, dose changed, etc. so they do look at that. MDS prescribes PD meds, Psy NP prescribes psych meds.
I've made it more than clear that I'd like to have all my psycho/neuro related care in one place but it's just not going to happen there (unless I decide to go the DBS route, which I haven't decided yet by any means). I may move to Stanford or Davis, both "centers of excellence", but haven't taken that step yet. Don't know if it would be better there either.
My providers will communicate with each other if I ask them to, or they consider necessary. They charge me for that, of course, and to have a good psydoc around here, you pay out of pocket, so I don't ask unless it's necessary.
I like my psych prescriber, she's sharp as a tack, very respectful and thorough, but no experience with Parkinsons, and not an MD (she's a NP). She's made some mistakes from my perspective, but I still prefer her to previous psydocs I've worked with. She knows me, and to start over with someone new, unless I get a really good recommendation from someone I trust, doesn't appeal to me.
So on we go limping along with this less than ideal money motivated medical system, in a money motivated culture, and a lot of docs who do care a great deal (others, not so much, admittedly), who are well intentioned, and covering their a**** with arbitration agreements to avoid being sued for malpractice. It's all part of the money game.
Have to mention the folks who will sue for malpractice (or injury at work or in an auto accident) when it's not merited...
Anyway, thanks for your educational rant, I did learn a new word today, iatrogenic, and you always call on us to think, much appreciated.
I believe Marion makes some very good points. I was depressed for some time and needed psychotherapy for various issues, but also was told I needed medication, since I was basically not wanting to live any longer. The medication was recommended by the psychotherapist who told me best to go to my neurologist and discuss with him first, she didn't want to disperse a prescription to me that could be contraindicated with the PD and other meds. I met with my neurologist/MDS and told him about my therapy and the recommendation for anti-depressants. He said he was glad I was referred to him for the medication as some is not appropriate for Parkinson's patients while others are preferred. He said he preferred Lexapro for his patients for anxiety/depression. He prescribed for me a small dose (10 mg) while I underwent treatment by the therapist for anxiety/depression.
I felt better at the beginning but then I started having issues with Levodopa. I needed more and more. Then the dyskinesia came and dystonia. Severe off symptoms. In my meeting with my neuro he began thinking I needed to go DBS as my symptoms were worsening. I got even more depressed thinking about DBS. I don't want a hole drilled into my skull. I just felt I wasn't ready. I told my Neuro I wanted off the Lexapro (had been on for a full year). He tapered me off. Once he did that I finally realized my brain started to feel better. I didn't need as much Levodopa. I also began citicoline as recommended by Dr. Mischley. My dyskinesia disappeared. My Levodopa reduced even more.
To end this story, in my last meeting (almost a year ago now) with my neurologist, we both came to the conclusion that I was on too much Levodopa, that the lexapro created an imbalance of serotonin and dopamine causing me to need more Levodopa. I was overdosing on Levodopa. I didn't really need DBS!
Please think about this and what Marion has said. Taper off the Levodopa. If you have not started yet, I recommend Citicoline and DHA Fish oil regime as recommended by Dr. Mischley. Taper off the psych meds as much as you can safely do. Let the neurologists handle all brain medications. Don't rush into DBS.
Thank you for bringing me back to this. I woke around 2am realizing i hadnt really understood Marion's advice fully and that my reply was defensive. Apologies to Marion.
I'm not as good at advocating for myself as i said. I have this problem of a psych med prescriber who doesnt have experience with PD. Too many meds on board, too many cooks in the kitchen who didn't talk with each other. My MDS knows the mix is problematic. I will go back to her and insist she help me find someone.
I know the mix of meds i'm on isnt good, but its complicated (complex PTSD, more than 20 yrs on psych meds). I am doing trauma therapy, but my nervous system is kinda stuck at the flight/freeze end of the spectrum.
Lowering the c/l is a start. Finding a psych med provider with PD experience, who also understands deprescribing, is also necessary. Not sure how to get that...
And getting the home support i need to taper some of the meds, also necessary. Not sure yet how to get that either...
I feel the caring and support coming through the advice from both of you.
I do already take citicoline, and fish oil, but not the high DHA one Laurie prescribes.
Yes, I myself knew I didn't want someone else prescribing my meds for me that could be a contraindication with PD knowing that any anti-depressant will create an imbalance of serotonin and dopamine. I told my therapist I would talk to my neuro and ask his advice on what he would prescribe his PD patient. Hey, he knows brains and how they work. So he was happy to supply the prescription. He also took over my prescription for neuropathy, Gabapentin. This way I feel any drug that messes with my brain or nervous system, I want to go through him or I want him to approve the prescription another doctor is recommending. Good Luck to you. I understand you have been through a difficult time. Complex PTSD is no joke. Neither is Parkinson's. Hugs š«¶
Dyskinesia and dystonia are the main reasons I had DBS and although they are not completely gone, they are significantly reduced and no longer intolerable. I wish I had done it sooner as the serious dystonia caused a lot of wear and tear on my body. C/L is the only med I take other than a natural thyroid med and the occasional.5 mg clonazepam at night.
can you describe a bit more on biphasic dyskinesia/dystonia?
after how long you take med it appear, how it feels?
does reduce C/L will help?
my symptoms worse when it is wearing off (dystonia) but better when completely off (dystonia is minimum but feeling weak). In order to avoid wearing off I have to take C/L around the clock.
I'm sorry to hear that. So challenging to get the meds, dose and timing optimized.
I get the opposite. I get dystonia shortly after taking C/L. This dystonia is a stiff left leg and toes turn up. It can last anywhere from a few minutes to almost until the next dose. Then I get dyskinesia, mostly chorea like dyskinetic movements, also thigh tightness, and if I get too low on C/L, foot dystonia (toes curl under).
I'm still parsing this out because there are so many intervening factors -- how well did I sleep? When and what did I eat? Did I exercise and how much, what intensity. It's a very individual thing.
My MDS concluded that that I was taking too much C/L because during my appointment (3 hours after taking Rytary, which I take in the morning 7am only, next dode of C/L at 11am. Appointment at 10:30am) she assessed my PD symptoms as well controlled, but I was dyskinetic.
I'm not an expert and to explain biphasic (or diphasic) dyskinesia any more than knowing its beginning and end of a dose rather than at peak, I'd have to google it, like you. As I understand it, it's very specific to each patient. So I don't think my dosing and frequency would be helpful.
If you keep a journal of your dose amount, timing, meals, and symptoms, you may be able, with your providers assistance, to determine if lowering the dose is approppriate.
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