[Virginia Therese]

Hi, everyone...I've just returned from a short vacation to Maine in New England...definetly a "prescription" I would suggest all of you ask your doctors to write...a very calm and serene atmosphere there in Ogunquit, Maine.

Now, I'll get to the point. You may or may not remember that my pwp (Doreen) experienced sudden and terrible dyskinesias...I had asked for input from all of you so that I would be able to discuss this with her neurologist at her last appointment. I was about ready to discuss with her "neuro" the possibility of eliminating Comtan from her "med" regimen based on a lot of research I had done AND based, too, on what I had gleaned from the input I received from forum. Before I had the opportunity to ask if he would consider eliminating the Comtan, he, himself, said that he was going to eliminate it. Doreen had also displayed some cognitive/behavioral problems while taking the Comtan and that situation has greatly improved, although, I do think that there is still some "tweaking" needed. Now...to the question...I SEEM to detect a correlation between the dyskinesias AND the behavioral/cognitive, i.e., only when there is dyskinesia present does there seem to be a degree of confusion and memory impairment (she had experienced these along with disorientation and disorganization while taking Comtan). Once the dyskinesia episodes subside, so do the cognitive problems subside...and, so it is that I ask: "Am I just imagining OR could there be any significance/validity to this "in sync" phenomena? I am just curious to know if anyone else has had that assessment made by a caregiver, etc.
Thank you for any input you may have..once again...I need this so that I will be able to report this to Doreen's neurologist when I call him on Monday. He will probably think that I "need help" of some kind...but, I am so intent on trying to help Doreen that I care not what anyone thinks of my questions!

Thank you for all your many kind and very informative responses to all my question, always....

Therese

[lou_lou]

that is good news!
I will tell you this -everydrug causes some kind of reaction -or some kind of side effect, we don't take Acetamenophen, for headaches because we have an Acetamenophen shortage in our bodies... it is because we want a quick fix for our bodies to stop hurting, and shaking hurts -
My sister calls massage therapy passive exercise -because the body is being
put through it's paces by the theraputic touch, and therefore - because shakling is movement, I would called shaking -dykinesia - passive exercise.
(((hugs to you and doreen)))

[lou_lou]

PS. -
I have been on Klonopin forever,
my dosage has remained the same for the last few years, however - according to the drug information - I am way over do for a complete blood count / and liver analysis. -for toxic liver...

so far nothing has ever been checked -unless some bad happens or I request it from my Doctor?
_______________

GENERIC NAME: CLONAZEPAM - ORAL (klo-NAY-zeh-pam)
BRAND NAME(S): Klonopin



USES: Clonazepam is used to treat seizure disorders and panic attacks. It belongs to a class of medications called benzodiazepines which act on the brain and nerves (central nervous system) to produce a calming effect.

This drug works by enhancing the effects of a certain natural chemical in the body (GABA).

HOW TO USE: Take this medication by mouth 2 or 3 times a day, or as directed by your doctor. Dosage is based on your medical condition and response to therapy. Use this medication regularly in order to get the most benefit from it. Remember to use it at the same times each day. Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Do not suddenly stop using this drug without your doctor's approval. Some conditions may become worse when the drug is abruptly stopped. Your dose may need to be gradually decreased. When used for an extended period, this medication may not work as well and may require different dosing. Talk with your doctor if this medication stops working well.

SIDE EFFECTS:
Drowsiness, dizziness, blurred vision, muscle pain, excessive hair growth or loss, change in sexual desire, weight change, increased saliva production, sore gums, or cough may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. Tell your doctor immediately if any of these serious side effects occur: loss of coordination, mental/mood/behavior changes.

Tell your doctor immediately if any of these unlikely but serious side effects occur: slowed breathing, easy bruising/bleeding, unusual eye movements, unusual fatigue, fast/pounding heartbeat, unusual muscle movement, one-sided weakness, slurred speech, trouble urinating.

If you have several different types of seizure disorders, you may experience a worsening of seizure activity at the start of using this medication. Consult your doctor immediately if this happens. The addition or dosage adjustment of other anti-seizure medications may be necessary to keep seizures under control. A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.

HOW TO USE: Take this medication by mouth 2 or 3 times a day, or as directed by your doctor. Dosage is based on your medical condition and response to therapy. Use this medication regularly in order to get the most benefit from it. Remember to use it at the same times each day. Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Do not suddenly stop using this drug without your doctor's approval. Some conditions may become worse when the drug is abruptly stopped. Your dose may need to be gradually decreased. When used for an extended period, this medication may not work as well and may require different dosing. Talk with your doctor if this medication stops working well.

SIDE EFFECTS: Drowsiness, dizziness, blurred vision, muscle pain, excessive hair growth or loss, change in sexual desire, weight change, increased saliva production, sore gums, or cough may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. Tell your doctor immediately if any of these serious side effects occur: loss of coordination, mental/mood/behavior changes. Tell your doctor immediately if any of these unlikely but serious side effects occur: slowed breathing, easy bruising/bleeding, unusual eye movements, unusual fatigue, fast/pounding heartbeat, unusual muscle movement, one-sided weakness, slurred speech, trouble urinating. If you have several different types of seizure disorders, you may experience a worsening of seizure activity at the start of using this medication. Consult your doctor immediately if this happens. The addition or dosage adjustment of other anti-seizure medications may be necessary to keep seizures under control. A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.

PRECAUTIONS: Before taking clonazepam, tell your doctor or pharmacist if you are allergic to it; or to other benzodiazepines (e.g., diazepam, lorazepam); or if you have any other allergies. This medication should not be used if you have certain medical conditions. Before using this medicine, consult your doctor or pharmacist if you have: narrow angle glaucoma, severe liver disease. Before using this medication, tell your doctor or pharmacist your medical history, especially of: alcohol use, drug dependency, kidney disease, liver disease, lung/breathing disorders, mental/mood disorders, open angle glaucoma. This drug may make you dizzy or drowsy; use caution engaging in activities requiring alertness such as driving or using machinery. Avoid alcoholic beverages. Caution is advised when using this drug in the elderly because they may be more sensitive to its effects, especially drowsiness and confusion. Caution is advised when using this drug in children because the long-term effects on physical and mental/behavioral development are uncertain. Discuss the risks and benefits with your doctor. This medication is not recommended for use during pregnancy due to the potential for fetal harm. If you become pregnant or think you may be pregnant, inform your doctor immediately. Consult your doctor for more details. This drug passes into breast milk and may have undesirable effects on a nursing infant. Therefore, breast-feeding while using this medication is not recommended. Consult your doctor before breast-feeding.

DRUG INTERACTIONS: This drug should not be used with the following medication because very serious interactions may occur: sodium oxybate. If you are currently using this medication, tell your doctor or pharmacist before starting clonazepam. Before using this medication, tell your doctor or pharmacist of all prescription and nonprescription/herbal products you may use, especially of: certain antidepressants (e.g., fluoxetine, fluvoxamine, nefazodone), cimetidine, kava. Tell your doctor or pharmacist if you also take drugs that cause drowsiness such as: antihistamines that cause drowsiness (e.g., diphenhydramine), anti-anxiety drugs (e.g., diazepam), other anti-seizure drugs (e.g., carbamazepine), medicine for sleep (e.g., sedatives), muscle relaxants, narcotic pain relievers (e.g., codeine), psychiatric medicines (e.g., phenothiazines such as chlorpromazine, or tricyclics such as amitriptyline), tranquilizers. Check the labels on all your medicines (e.g., cough-and-cold products) because they may contain ingredients that cause drowsiness. Ask your pharmacist about the safe use of those products. Do not start or stop any medicine without doctor or pharmacist approval.

OVERDOSE: If overdose is suspected, contact your local poison control center or emergency room immediately. US residents can call the US national poison hotline at 1-800-222-1222. Canadian residents should call their local poison control center directly. Symptoms of overdose may include: severe drowsiness and confusion, loss of consciousness, slowed/decreased reflexes.

NOTES: Do not share this medication with others. It is against the law.

Laboratory and/or medical tests (e.g., liver function tests, complete blood count) should be performed periodically to monitor your progress or check for side effects. Consult your doctor for more details.


MISSED DOSE: If you miss a dose, use it as soon as you remember. If it is near the time of the next dose, skip the missed dose and resume your usual dosing schedule. Do not double the dose to catch up.
STORAGE: Store at room temperature (77 degrees F or 25 degrees C) away from light and moisture. Brief storage between 59-86 degrees F (15-30 degrees C) is permitted. Do not store in the bathroom. Keep all medicines away from children and pets.

MEDICAL ALERT: Your condition can cause complications in a medical emergency. For enrollment information call MedicAlert at 1-800-854-1166 (USA) or 1-800-668-1507 (Canada).

[wwally0]

Good evening folks. I'm in Nova Scotia for a few days as my Grandmother turned 93 and she still runs around like a teenager. Hope I'm not repeating myself; I'm writing PD advocacy work, reporting to a PD support group and doing the “visiting relatives circuit,” so I don’t know who I've told what. To answer your question Therese,
Comtan gave me a *h*e*l*l* of a ride. It does a good job for many, but it really set me back. I didn’t know that I’d be able to make this trip ‘till just before I left as my driving confidence was nil.
Recent drug changes:
- decreased Sinemet when Comtan started and went through withdrawal+++
- reinstated Sinemet, yet remained shaky all over for some weeks
- allergic reaction to Comtan – facial rash and hives on extremities and a swollen tongue which I discovered when biting it through the night
- Comtan stopped and Sinemet increased
Overall results - I was worse than ever on Comtan – Whenever my meds are out of whack my mental acuity and short term memory definitely plummet – plus the fatigue. I was definitely toxic. My neuro was on vacation at the time so had to make adjustments myself. While toxicity contributes to confusion it will clear in fairly short order. This is the first time I’ve experienced a systemic shock from a drug. After stopping Comtan, I started facial grimacing (brand new for me) – could actually feel my lower jaw moving right to left and lips trembling – that symptom took another week or so to subside. Another factor that helps the fog to lift is to ensure that a body is keeping regular -- a sluggish bowel can increase potential toxicity. In retrospect, I should have been more cautious when the 1st dose turned urine the brightest shade of orange – sorry, too much information, I know. Hope some of this late-night meandering is helpful. I’m feeling much better and hopefully Doreen is too. Best regards, Guy

[made it up]

Hi Therese,
When you say behavioural changes what kind does Doreen have?
I used to get a bit hyped up and think I could do just about anything after the Sinemet kicked in. Then came the off and with it I came back to earth with a giant thud.
When I took Comtan I too had problems a bit like Guy, when extremely dyskinetic I got oral dyskinesias too. Tasmar another COMT inhibitor after a time wasn't much better, that plus the sunset orange urine Comtan gives!

Is Doreen on Amantadine now Therese?
Regards,
Lee

[Virginia Therese]

Tena...so much information...thank you...and I agree that most doctors do not follow through with medical tests to determine organ damage, etc.

...and Guy...You spoke of your "late-night" meandering. I think that could be applied to my post last night, in that I really didn't make too clear my main question, i.e., related to my perception that there seems to be a correlation between the dyskinesia AND the behavioral problems, e.g., impaired short-term memory, confusion, lack of concentration, etc. Once the dyskinesia resolves, so do these behavioral problems...or, so it seems to me...and I guess I'm just searching for information that might validate this perceived correlation and a possible reason for it.

...and Lee...no...Doreen has not yet taken Amantadine, but this was discussed at her last visit with the neurologist as a definite possibility to address specifically the dyskinesia. However, he first wanted to eliminate the Comtan (one thing at a time is his procedure...otherwise, there's no way to be certain what "med" is doing what)...but, he certainly was not adverse to prescribing Amantadine, and I think he will probably add this to her medication regimen soon, i.e., after I've described to him the response to the elimination of the Comtan. I know from what many of you have told me about Amantadine and its positive results that this could very possibly be so helpful for Doreen in eliminating...or, at least, alleviating the dyskinesia. Doreen also takes Cogentin specifically geared to treating the tremor which has been her predominant PD symptom for 10 years+...and, at the present time, she has NO tremor so that it seems that the Cogentin is "working" for the tremor. However, this medication can also have similar adverse side effects to that of Comtan, although to a lesser degree, so now I'm curious as to whether or not the Cogentin needs adjusting even though it has done wonders for the tremor...always something, right? I'll just "sneak in" this one question, here. Are any of you familiar with Cogentin...have you ever taken it...and, if so, what have been the results?

In looking back at this post, it almost seems like a "brain teaser" exercise...but, then, that's good for the brain, right? Thank you all, again, for your very valuable input. I will just say that I have "volumes" of reading material about PD right here in my home, but it is this forum that most helps me to be a better carepartner...thanks, again...

Therese

[wwally0]

This question is difficult to sort out and it is not lack of clarity, but the complex nature of PD -- too little medication, too much, disagreeable reactions, and adjustment periods (when a foggy confused state can level out and dissipate on its own over days and sometimes weeks). Also, sometimes the mental landscape shifts, after an increase or when medications just don’t mix well. Even a cold can effect metabolization.

If by dyskinesia you mean involuntary movements that can show up as doses of Sinemet peak, I’d be inclined (my opinion only) to say that there is only a partial correlation between dyskinesia and impaired short-term memory, confusion or a lack of concentration.

For me dyskinesia is only one symptom separate from the main causes of confusion. For example, my dyskinesia is better when I stick to Sinemet 100/25s approximately every 2 hours during the day and early evening rather than taking higher doses less frequently. There is a balance and muscle to mind connection that is seldom discussed. If my meds are finely tuned my muscles behave better and my mental muscle follows suit. If I have dyskinesia+++ I’m overtired and the fog rolls in. Some days I have one speed and it is slooow -- bradykinesia (slowness of motion) weighs me down. You may ask me a question and I'll have the answer, but there is a delay in the response time. Just as I drag my left foot so go-eth my mind. I may just make this “mind, muscle, balance” my new mantra. Your neuro’s have patience; deal with one drug at a time common sense approach is also very reassuring. Guy

[Virginia Therese]

I read your reply to my post with great interest, Guy...and "yes"...by dyskinesia I did mean involuntary movements...BUT, they seem NOT to be related to nor do they seem to correspond to the peaking of Sinemet...as Doreen said when she read your reply: "They come when they feel like it!!!" Your mantra..."mind, muscle, balance"...very appropriate with information that confirmed it. Also, "if foot drags, so goeth my mind"seemed to really emphasize what you had said.
Thank you so much, Guy, for taking the time to respond to my post...and I hope that things are going reasonably well for you.

Therese