Mental Health Family Member Prescribed L-DOPA Driving Me Crazy

[SpunkySkunk347]

I don't really know where to put this thread

one of my family members is prescribed L-DOPA for Parkinson's-like symptoms. I can not handle it. She keeps repeatedly asking the same questions every few minutes, like no answer satisfies her. She can not turn off; she can not relax. When I get irritated/annoyed, it only makes her persist even more. She shops; she gambles; its just disgusting to me.

What can I do??? She's been on L-DOPA for a few decades I think.. Which is just pathetic for the doctor who prescribed her it; its well known that L-DOPA just causes a person's condition to deteriorate in the long-run. Honestly, I think the doctors she goes to are crooks; they're trying to take advantage of an old lady by prescribing her things that will cause twice as many health problems as they solve, and suck her into the downward spiral of the health system.

I feel like her personality only glimmers through occasionally. It's as if her brain literally won't allow her to stop thinking and worrying; even if there's nothing to worry about it will invent something to worry about.

It reminds me of someone on speed except they're not ever euphoric, just constantly 'on'.

Basically, I'm wondering how I'm supposed to tell her that her doctor's a piece of sh*t and she's acting like a druggy without sounding like I don't know what I'm talking about.

 

[missmeyet?]

Parkinsons type symptoms , to me are like a nightmare. I couldn't imagine going through the horrible symptoms. Not only does it cause sever physical disability due to lose of muscle control, muscle rigidity and uncontrollable tremors, the lack of dopamine in the brain also causes problems with information processing causing problems with memory and concentration.

That being said, the issues you are talking about being annoying may have more to do with her disease process than her meds. What does her gambling and all have to do with anything? I don't understand.

Is this someone you care about?

You said she was old. If she has been on levadopa for awhile then the med is well known for beginning to eventually having a wearing off effect. It doesn't last as long, requires more frequest and larger doses which then in turn causes more side effects. I don't know how her doctors would possibly be taking advantage of her in this way....doesn't make any sense (unless you can provide more detail regarding your thoughts on that). This is the most common drug used to treat parkinsons type symptoms and has less horrible side effects than the other drugs used to treat it. Its a no win game no matter how you look at it.

If it is someone you care for then just be happy she is not totally disabled, needing to be fed, shitting her pants and unable to care for herself at all. Have a little compassion whether you care about her or not. It is a horrible way to live. Put yourself in that life for a day and see how you feel. No hard feelings meant, but basically, get over it.

 

[SpunkySkunk347]

I don't really know, its something uncommon; she has no immediate reaction to say, put her hands out to break her fall if she trips.. She's really slow doing things with her hands. It's some kind of nerve problem, I think it has something to do with having scoliosis when she was younger. She had surgery on her upper spine not too long ago to drain excess fluid, because they thought that fluid was building up and it was going to leave her wheel-chair ridden in a year or two if she didn't do anything about it.. That was a different doctor than the one who prescribed her L-DOPA though; she got put on L-DOPA sometime in the 90s I think.

Honestly, I think back when it was prescribed to her it was being given out like speed for old people, as in doctors just threw prescriptions of it around everywhere, with no solid diagnosis.

 

[SpunkySkunk347]

Parkinsons type symptoms , to me are like a nightmare. I couldn't imagine going through the horrible symptoms. Not only does it cause sever physical disability due to lose of muscle control, muscle rigidity and uncontrollable tremors, the lack of dopamine in the brain also causes problems with information processing causing problems with memory and concentration.

That being said, the issues you are talking about being annoying may have more to do with her disease process than her meds. What does her gambling and all have to do with anything? I don't understand.

Is this someone you care about?

You said she was old. If she has been on levadopa for awhile then the med is well known for beginning to eventually having a wearing off effect. It doesn't last as long, requires more frequest and larger doses which then in turn causes more side effects. I don't know how her doctors would possibly be taking advantage of her in this way....doesn't make any sense (unless you can provide more detail regarding your thoughts on that). This is the most common drug used to treat parkinsons type symptoms and has less horrible side effects than the other drugs used to treat it. Its a no win game no matter how you look at it.

If it is someone you care for then just be happy she is not totally disabled, needing to be fed, shitting her pants and unable to care for herself at all. Have a little compassion whether you care about her or not. It is a horrible way to live. Put yourself in that life for a day and see how you feel. No hard feelings meant, but basically, get over it.

She doesn't get tremors or uncontrollable muscle movements.
As far as I know, she went to the doctor back in the 90s because she has no knee-jerk reaction (don't know what else you call it), mentioned she also has difficulty doing things with her hands, the doctor didn't have a clue what it was, called it "parkinson's like", prescribed her L-DOPA, and sent her on her way

And you've never heard of L-DOPA causing compulsive behaviors?

 

[Black Rabbit of Inle]

She doesn't get tremors or uncontrollable muscle movements.
As far as I know, she went to the doctor back in the 90s because she has no knee-jerk reaction (don't know what else you call it), mentioned she also has difficulty doing things with her hands, the doctor didn't have a clue what it was, called it "parkinson's like", prescribed her L-DOPA, and sent her on her way

So since the 90's, why has she not gone to see another doctor (to at least follow her condition) and gotten a second opinion?

What other symptoms did/does she have in regards to muscle movement throughout the rest of her body? You mention slowness in arm movement, no uncontrollable tremors, no 'fail-safe' reaction (putting hands out to break a fall) and the memory degeneration. Has it gotten any worse in the last decade or so?

 

[SpunkySkunk347]

So since the 90's, why has she not gone to see another doctor (to at least follow her condition) and gotten a second opinion?

What other symptoms did/does she have in regards to muscle movement throughout the rest of her body? You mention slowness in arm movement, no uncontrollable tremors, no 'fail-safe' reaction (putting hands out to break a fall) and the memory degeneration. Has it gotten any worse in the last decade or so?

Look, have you talked with any doctors lately?
They do not know anything about the medications they are prescribing, other than the medication's sale's pitch.
How about this: if a doctor can't draw an org. chem. molecular sketch of a drug, they sure as shit shouldn't be prescribing it.

She describes muscle pain in her lower back. There hasn't been memory degeneration, but things she says seem to come out from skewed perspectives - ones that remind me heavily of dopaminergic stimulants.

That's really all her condition is:
- back pain; doctors attributed this to scoliosis when she was younger
- weakness in hands, and poor muscle coordination (she has been playing the piano and taking lessons for 10+ years, but literally can't improve her ability at playing it); doctors attributed this to spinal fluid building up at the top of her spine near the brain stem
- prescribed L-DOPA, which if my knowledge of dopamine serves me right, would slow down any form of recovery from the issues mentioned above
- and no fail-safe reaction (heard it before couldnt remember what it was, thanks)
I am worried she is going to reach an age where her body will be too old to make any sort of progress towards recovery. The neurological issues don't seem to be getting worse, but the muscle pain in her back is.

Is there any way this idea I have hold's water: excessive L-DOPA in the body will signal the CNS to eat less foods which contain L-DOPA (or the metabolic precursors of it), such as meat? Could this result in a muscle deficiency over time due to a lack of protein and essential nutrients?

 

[missmeyet?]

No.

And parkinsons type symptoms don't generally "get better". All of the things you mentioned can be parkinsons symptoms. If she were not on the medication she could actually possibly have worsening of symptoms.

 

[Black Rabbit of Inle]

Look, have you talked with any doctors lately?
They do not know anything about the medications they are prescribing, other than the medication's sale's pitch.
How about this: if a doctor can't draw an org. chem. molecular sketch of a drug, they sure as shit shouldn't be prescribing it.

Yes, I have talked to doctors recently, and I know they don't know everything about the drugs they're prescribing which is why I asked why she hadn't gone for a second opinion. Doctors have a habit of prescribing a drug more because the pharma companies give them incentives for every patient they put on a certain drug.

Doctors aren't chemists, asking them to be able to draw the molecular structure of a drug to be able to prescribe it is laughable. A computer technician doesn't have intimate knowledge of the construction of a certain type of video card, so why expect a doctor to have intimate knowledge of the makeup of drugs?

Like missmeyet? said, the medication could be stopping the symptoms worsening. Your best bet is seeing an independent doctor with you accompanying her, explain your concerns about her diagnosis and medications. But if she doesn't want too, then there's nothing you can do.

 

[SpunkySkunk347]

Doctors aren't chemists, asking them to be able to draw the molecular structure of a drug to be able to prescribe it is laughable.

Why is it laughable? I'll take that argument.
What was a doctor learning in med-school if a pharmaceutical company's sales pitch tells them everything they need to know when prescribing medicine?

A computer technician doesn't have intimate knowledge of the construction of a certain type of video card, so why expect a doctor to have intimate knowledge of the makeup of drugs?

Because when a "computer technician" messes up, it doesn't kill people.
Also, who are "computer technicians"? I assembled my computer out of parts I ordered online, does that make me a computer technician? Are the guys at a computer store "computer technicians"? I think they may be in your imagination.

Like missmeyet? said, the medication could be stopping the symptoms worsening. Your best bet is seeing an independent doctor with you accompanying her, explain your concerns about her diagnosis and medications. But if she doesn't want too, then there's nothing you can do.

I like how you've concluded now that "Parkinsons-like Symptoms" means that stopping the medication could worsen symptoms, after you've just admitted that doctors do not always know everything about what they are prescribing and diagnosing.
She has had a lack of a fail-safe reaction the majority of her life; she had scoliosis when she was a kid -- the doctors attributed most of her symptoms to spinal fluid building up at the top of the spine near the brain stem; Parkinsons is not caused by spinal-fluid build-up - it's a neurological disorder.
Furthermore, L-DOPA could infact worsen her condition, and here are the reasons: excessive dopaminergic activity causes damage to associated pathways via oxidative stress resulting from dopamine's metabolism; now, if the body repairing neurons in one region of the brain means it will have less available resources for repairing neurons in a different region of the brain, such as the brain stem, then L-DOPA would be damaging to her condition. Even if this is not the case, the stimulating nature of L-DOPA would promote physical activity, which could be damaging to the brain stem if an injury sustained there is caused by physical trauma at the top of the spine and is not neurological in nature.

What I want to know is, why is she prescribed L-DOPA when, logically, one would think it might very well cause more harm than good to a person in her condition?
Furthermore, I feel that the pharmaceutical companies pressuring doctors into prescribing L-DOPA are to blame for it being prescribed to her when it wasn't needed and was potentially more damaging, and if that can be proven, I am going to take legal action.

Someone down the line should have recognized that:
- L-DOPA was prescribed under assumptions which later turned out to be false.
- She should have been taken off L-DOPA as soon as there was reasonable doubt about the cause of her condition being neurological in nature.

 

[SpunkySkunk347]

No.

How can you say that with certainty? The brain craves certain foods based on what the body needs; if the body is low on sodium for balancing out the water levels of cell membranes, it will crave salty foods. Couldn't the same apply to precursors of dopamine in foods? If not, by what mechanism does the body's craving for certain foods differ depending on what it needs? I'll tell you: because the sensation of craving is, to a degree, a learned pleasure-based sensation. If her body was able to make a clear distinction between excess dopamine and physical pain, it would attempt to cease any activities which lead to excess dopamine. Although the brain would be unable to determine this with certainty, it would still dampen the pleasure of any activities associated with dopamine production, such as the consumption of foods containing L-Tyrosine, until it could make more conclusions.

Since the CNS is not able to naturally recognize the presence of L-DOPA in the gastrointestinal tract due to its rarity in foods naturally ( thereby lacking presence genetically when it comes to the body's instincts for food consumption), when it comes to the region of the brain associated with hunger/appetite, the brain would only be able to associate L-Tyrosine with dopamine production, and not L-DOPA.

The foods which L-Tyrosine is present in are almost invariably foods with a high protein content, and therefore would also provide resources used in muscle growth and repair. The avoidance of L-Tyrosine would be expected to cumulatively result in protein deficiency, despite whether or not protein was able to be obtained by other sources -- the mere fact that a broad range of foods high in protein are being avoided would mean that less protein is going to be ingested over time compared to someone who wasn't avoiding foods with L-Tyrosine.

Check.

 

[Corazon]

There's a probability that your family member was over-prescribed a drug that they do not need. There's also a probability that it is exactly the perfect beneficial medicine and dosage.

The only thing that can really be done is to do some research, take her to a few doctors and get some 2nd opinions and ask them questions.

That is the best advice we can give you.

 

[SpunkySkunk347]

So she find's herself stuck in a paradox: trying to "stop thinking about it" causes her to subconsciously cut foods with L-Tyrosine out of her diet and ultimately amounts to an increase in back pain due to protein deficiency, and a lack of exercise for the affected muscles (which is also perpetuated by the pain); the worsening state of her back also worsens the state of her spine next to the brain stem, causing the neurological symptoms to worsen.

Then, as her brain tells her to "start thinking about it" again, the excess dopaminergic activity causes her body to wear itself out faster than it can repair itself and replenish its resources, which also causes a worsening of her condition.

All the while, she is unable to figure out why she is feeling the way she is, and keeps going back to the medical system for help, which is prescribing her the medication contributing to her problems. Can you say leech and parasite?

 

[missmeyet?]

Geez dude you are answering your own questions regardless, so why ask?

You are making assumptions about theories you have with absolutely no medical background to base it on. It doesn't always work the way you would think it should. Neurology is such a complex field and frequently they don't know what causes parkinsons symptoms. Yes the drug could make some of her symptoms worse but it also may be keeping worse symptoms in check.

If you feel it is a complete bullshit diagnosis and bullshit treatment then yes she should go to get a second opinion. She has to have been seen by more than just one doctor since she was put on this medication if she has been on it as long as you imply. When they ask why she takes it I can't believe all the docs are so corrupt that no one would investigate further. But for her symptoms (regardless of what the cause of them were) it is a somewhat nasty group of drugs that they use to treat it. Levadopa happens to be the less evil of them all.

You sound as if you feel you know enough about what she really needs but I would strongly suggest that you not encourage her to make any changes without consulting doctor, either current or a new one.

Have you ever went to a doctor appointment with her? That would be the perfect time for you to bring up those concerns (though I do not think you will be amused by the response, nor do I think you would listen if it didn't agree with your ideas-docs just love it when people think they know more about medical issues based on how they think things should work). My advice would be to bring it up but not with an attitude.

Also, are you the person that is in charge of her medical care? Does she take care of herself?You made comments that lead me to believe that this person is still mentally competent. Just because she is an older person and it "gets on your nerves" doesn't mean she shouldn't be allowed to do the things she wants such as gambling etc. It drives me nuts when people treat elderly people as if they are children. Its great and you should watch out for loved ones if you are concerned about medical care they are getting or not getting but base your arguments on facts not your opinion that the whole profession is corrupt and are idiots.

 

[Lady Codone]

Gambling addiction, shopping and other compulsive behaviors are directly linked to Parkinson's drugs. Not sure if that's been mentioned or not.

As for the cognitive effects/anxiety, it's probably the L-Dopa causing that too. Some people have full-on hallucinations from it, which makes sense because dopamine is the main neurotransmitter involved in schizophrenia.

AFAIK, there aren't many treatment options for Parkinson's besides drugs and deep-brain stimulation. If she were to quit the meds, her Parkinson's symptoms would undoubtedly become worse, so it's a balancing act for sure. If her doctors aren't being sympathetic or taking you seriously, go elsewhere. She deserves a good treatment team who's willing to try different things.