Help Needed! Selegiline?

[LauraYu]

I am on Sinemet/ Zandopa 4 times a day, including 3 times during the day and 1 before bedtime. It works well for me so far, during Sinemet on- time, I am pretty much symptom free ( although it only lasts for about 2 hours). I also take it right before bedtime, so I can have few hours of comfortable sleep.

Recently my neurologist added Selegiline, 10 mg a day, to improve the symptoms during off-time. I have been on it for two weeks now, I have not experienced side effects, but my motor functions have improved significantly. However two nights ago, I started experiencing the horrible whole body shaking after I took my Sinemet/Zandopa before bedtime. 15 minutes after taking Zandopa/Sinemet, it started working. I can move freely on bed, but my whole body started shaking like a earthquake. I can hear my head shaking on pillow, my legs, trunk, leg muscle twitching, even my fingers are shaking. The horrible shaking starts when Sinemet started working, and ends after Sinemet wears off. So it’s caused by Sinemet/zandopa.

What is going on? I am also taking it during the day, why it doesn’t cause this kind of body tremor during the day? Maybe I need to reduce my dosage of Sinemet because of selegiline? Have any of you had similar experience? Need your advice and knowledge. Thank you 🙏

[park_bear]

Since this started with the selegiline, you could try omitting your evening dose and see if that solves the problem. Selegiline does have minor stimulatory effects and for that reason I take a dose in the daytime only.

Also, worth understanding the difference between immediate release and controlled-release Sinemet:

healthunlocked.com/cure-par...

[LauraYu in reply to park_bear]

Thank you Park_Bear. I will stop the evening dose today. I also vomited this afternoon after taking sinemet/ zandopa, definitely a sign of overdosing. Laura

[LauraYu in reply to park_bear]

Also let me put some thought on the controlled release Sinemet. Really appreciate your help!

[Farooqji]

Selegiline should not be stopped immediately to avoid withdrawal effects

[LauraYu in reply to Farooqji]

I am not going to stop selegiline since it works on me. I think selegline triggered more dopamine stayed in my body, thus resulted in this kind of reaction. I didn’t take sinemet before bedtime last night, had a less comfortable sleep but didn’t have the horrible body tremor. Hopefully selegiline continue to drive my dopamine up, and I can have some easy time of sleep

[wifeofparky]

Please discuss any dosage changes with your MDS. Never stop or change meds without discussing it first.

[LauraYu in reply to wifeofparky]

My neurologist takes 2 weeks time to reach, 😇

[MarionP in reply to LauraYu]

Two weeks? In this era of telephones? Do Canadian doctors not take the "do no harm" (which includes violating continuity by omission) oath? Surely not. Doesn't sound like any doctor I heard of.

By the way, you (your doctor) has combined three different medications and not even with reference to which of them if any is an immediate-release vs. controlled-release or continued-release format, nor discussed with you the idea of different curves of uptake and drawdown (called, respectively, pharmacokinetics and pharmacodynamics), side effects and reversability and mixings, starter doses and graduation of beginning doses vs. when to move to larger doses.

These are ALL things to be talking and advising you about in an interactive conversation. Was any of that not included?

Does he think you are impaired that you cannot help as an adult patient and have a realistic discussion that anticipates what to do in the case of "this or that?"

Something seems to be seriously missing in this scenario, maybe I must not have all the facts yet or have missed something.

Best thing to do is, if you don't think it's you leaving a great deal out of this conversation, then show him this and the other entries and ask for some guidance because abrubt-head-banging and hard vigorous tremoring that you can't just turn off is a seriously frightening experience and he will want to look into it with you pronto just to be sure it's a relatively benign thing.

[LauraYu in reply to MarionP]

Yes, unfortunately I have just waited for two weeks to get Mirapex replaced by selegiline, because I had side effects with Mirapex. Disregard I have followed up my neurologist’s office for 4 times, the two weeks waiting time even made me to question my eligibility to call for change between my regular 6 months appointments 😂

My previous neurologist has always had reasonable response time, but I had to switch because I moved to a different city. My current neurologist is with a top notch hospital, I guess that’s probably the reason of taking longer to respond, high volume of patients, priorities among DBS surgeries, research, etc. maybe my minor request would be on the bottom of the priority list? 😇that’s my guess, don’t really know. Also each appointment never had the luxury of discussing the curves you mentioned, lol, a short appointment, most of times only hear decisions, rarely explanations.

[wifeofparky in reply to LauraYu]

I don't care what hospital he is associated with. You should get a call back within 48 hours if not sooner. Does he have a portal that you can send your questions through instead of calling and leaving a verbal message? I'd be looking for a new Movement Disorder Specialist pronto. This is a serious disorder and you cannot fool around playing Russian Roulette with your meds.

[MarionP in reply to LauraYu]

Guaranteed if he is as good as you say he is then he will actually WANT to see this string...and will not take it personally. Sometimes busy people can let the various demands passively influence him without his meaning to, and at that point he actually needs the patient to speak up, and maybe a lot to get his attention.

When I had my first heart surgery, as I was coming to out of anasthesia waking up I was having a fit of a time breathing, because of the tube they had put down my trachea...and I couldn't breathe or speak and wasn't getting at all enough air...couldn't open my eyes or cough or anything...yet I could hear several people casually chatting above or around me somewhere. Turns out they were actually right above me but I could not tell that. Somehow I got my arms to wave, and my wife all of a sudden noticed, and I made a charade of a hand and pad and made motions until someone gave me a pad and pen, and as I was passing out for lack of air, blind then I wrote "ASPIRATNG".. and just right after there was a big commotion, she got shoved out of the way and my hands were slapped back and I am told four or five people got really busy getting the obstruction out and the air in and then later someone told me it was really lucky I'd been able to signal enough to get someone to actually stop what they were doing to notice...Wifey said nobody realized until they saw that and then boom here is everybody at once shoving her out of the way like some TV show to get in and get me breathing again...and said that the team person said it was a good thing I did that, they wouldn't have noticed me suffocating right in front of them otherwise.

Nobody scolded me about being some irksome pesky patient either.

😊😊 YOU CANT BE PASSIVE!!!

For all you know, they might just figure that if you were really having a problem you would have spoken up loud. They're only human, after all.

[LauraYu in reply to MarionP]

Thank you MarionP and wifeofparky for supporting me in this matter. I did go through the emotional cycle of being upset, angry and desperate, as day by day I was suffering from the side effects, and without talking to the dr, I didn’t want to stop the medication by myself. I debated and debated of whether I should go through the hassle of changing a neurologist. To see a new movement disorder specialist, patients have to go through the referral process which could take several months to a year ( lovely and famously slow Canadian Health System 🙄). During the two weeks of waiting time, I spoke to the doctor’s secretary four times, she kept apologizing but just no returning phone call from the dr. I also asked if I could send the dr. email directly, or if other doctors or nurses who can help me, the answer is NO. The Canadian health system really put patients in a disadvantage position, limiting our choices to serve our demand.

I decided to swallow the pain and suffering this time. As you suggested, I really have to speak up next time, maybe my voice was just not loud enough to be heard this time. I truly appreciate your thoughts on this, please accept my sincere thank you !

Laura

[MarionP in reply to LauraYu]

That reminds me when I move I will make sure to NEVER relocate to Canada. Had played with the idea.

Call 15_20 times a day. Seriously. Eventually someone will get tired enough to respond in order to get you to stop the barrage....we psychologists term it "negative reinforcement," wherein you present a noxious stimulus (unending calls from the patient) and present the prospect that the only way to get you to stop (i.e., withdraw or "negate" your noxious calls) is to respond, and thus be rewarded by you stopping.

Very serious about this. How do you shut up a screaming baby, something is obviously very wrong. Obviously the baby needs something, and meeting the need will make it stop, and if you don't respond neither will the baby quit, until you do respond. Same principle. So go compulsive or autistic on their ass that way.

Try it, what have you to lose? If they protest, tell them Canada is medically unethical and to vote conservative next time, their lack of ethics is not to be your problem, they at least have to pay for it by having you leave 25 calls and messages every day. Serious. Then when they take the moment to tell you to piss off you can say "Well, since we're already here and talking, I'm having these dangerous adverse reactions..."

Also, since it's Canada, can you call the emergency ambulance services?

[LauraYu in reply to MarionP]

Lol 😂 thank you for the idea of crying baby. I guess if nothing else works, being a crying baby is probably the only alternative for me to get attentions next time 😂

I have not tried calling 911 (emergency) yet. But I can almost assure you that if I called, ambulance will come quickly and send me the a hospital , I will end up in the hallway of the emergency room for several hours, then a doctor comes and tells me that nothing he can do for me and I need to go home and talk to my neurologist 😇last time my friend had a fishing hood on his finger and ran to the emergency room. He was there waited for 5 hours before seeing the doctor, with his thumb up and a fishing hook on it 😂

These issues are probably typical for any health system that is supported by public funding. I am going to vote for conservative next time, but I can’t see anybody can be a magic hand doing a quick reform. The only solution is to learn some survival skills like crying baby 😇thank you my friend!

[MarionP in reply to LauraYu]

Move south, here in the US we like Canadians, regard them as harmless.

[LauraYu in reply to MarionP]

Lol 😂

[shanaandbear]

Hi❤️ I only take Selegiline. No side effects. I can’t take C/L because the side effects were terrible for me. Throwing up after taking just ONE LEVADOPA; passing out on too much Carbidopa….life flighted to hospital and nine days in trauma ICU because of head injuries and brain bleeds. I would rather have tremors than suffer the side effects of C/L.

[LauraYu in reply to shanaandbear]

I am so sorry about your hospital journey , and glad that Selegiline works for you! I wish you best luck in fighting for your health🙏🙏🙏