[MaryCAngelLady]

I have Parkinson's and so far my symptons are still mild. i am experiencing sore spots on my muscles that I can pinpoint with my finger. Is this normal? Or is it unrelated? I am taking Mirapex and am also experiencing severe daytime sleepiness. Any insight would be appreciated since I have only been dealing with P.D. for about 3 years.

[vlhperry]

Dear Mary,

Perhaps the following link discussing the merits of Mirapex would be of interest to you.

http://neurotalk.psychcentral.com/thread37504.html

It is a very recent discussion. As many have said, some would want to sue the pharmacy for pushing this drug to market too soon, others have found it to be most enhancing to the quality of your life. I am afraid just about every drug prescribed for PD has been discussed on this forum, both the good and bad aspects of them, and you will find it hard to find a 100% quorum on any of them.

I would suggest starting with this forum, educating yourself as much as possible, and then you need to learn to have faith in how the drugs make you feel, and choose for yourself what works for you. That includes not only pharmceutical drugs but also natural holistic treatments as many find these to be as helpful. Try to keep an open mind to the infinite opinions on this site of what works for people and discuss any ideas with your physician. If he is not open to trying what you feels works for you, you may need to see a Movement Disorder Physician. Try not to pin your anger on any entity either a person on this forum, a family member, or the medical profession. You didn't ask for the disease to enter your life, nor did anyone else. But now that you have it you must learn to take responsibility for your health by educating yourself on the options and choosing what works for you.

You will find that some physicians tend to slot their patients into certain categories which your symptoms do not fit. Find a physician who is openminded and is willing to listen to you and allow you some leeway to find the best recipe of the available treatments that fit your specific symptoms.

Some times I feel like I have entered a world with a whole new set of rules, none which are the same as they were in my life prior to having the diagnosis of Parkinson's disease. I see Cheshire cats' grinning at me from all different directions, the white rabbit rushing around, angry and mad at everyone for making him late, and just waiting for the time I meet the Queen of Hearts who will scream, "Off with her head!" and then it will all be over. You must use your common sence, keep your character stable, and be true to yourself and your beliefs.

Peace to you,
Vicky

[lou_lou]

Originally Posted by MaryCAngelLady

I have Parkinson's and so far my symptons are still mild. i am experiencing sore spots on my muscles that I can pinpoint with my finger. Is this normal? Or is it unrelated? I am taking Mirapex and am also experiencing severe daytime sleepiness. Any insight would be appreciated since I have only been dealing with P.D. for about 3 years.

welcome and hello dear angelady~
may I ask you about the pain where is it exactly, do you have stiffness cramping in the legs -joints and perhaps the neck and shoulders,
I know that I have pain and stiffness, sometimes cramping in the calf muscles,
so I personally use - living calcium made by Garden of Life -it has a very
soothing effect on my leg/neck/dystonic/ pain - I do not sell any products - but this is what I use and I have had PD for 15years,

I also use motrin as well...
also do you breathe deeply or more shallow?
do you have gout in your family, or arthritis?
please gove abit more details -
thank you~

[MaryCAngelLady]

I have a couple of areas on my collar bone, done the side of my legs, a spot near my knees and on the top of my shoulders. I do have some cramping and the aching is very bad in my calves if I miss a dose of mirapex.

Thanks so much for your information. I have so much to learn.

Originally Posted by CTenaLouise

welcome and hello dear angelady~
may I ask you about the pain where is it exactly, do you have stiffness cramping in the legs -joints and perhaps the neck and shoulders,
I know that I have pain and stiffness, sometimes cramping in the calf muscles,
so I personally use - living calcium made by Garden of Life -it has a very
soothing effect on my leg/neck/dystonic/ pain - I do not sell any products - but this is what I use and I have had PD for 15years,

I also use motrin as well...
also do you breathe deeply or more shallow?
do you have gout in your family, or arthritis?
please gove abit more details -
thank you~

[lou_lou]

I just found this website - I have used both ashwagandha and triphala,
for a long time - I was told about Ayurveda by a lovely lady from India,
that I met while visiting a friend in Washington DC...
she said - it helped her husband heal from cancer.
every medicine has some type of side effect, it may be it takes certain minerals and vitamins etc, from the body quickly, or worse...
but all medicine has an effect...

peace angelady -
sincerely
tena

here's bit of info and the link -

http://www.ayurvedhealthcare.com/nat...amps-cure.html


Ayurvedic approach

In Ayurveda, muscles cramps or spasms are simply caused by vata dosha. Increased by mobile, rough or cold qualities, Vata makes a muscle hard and stiff, unable to relax and goes into a spasm.

· Instant relief
When you experience a spasm or muscle cramp, here’s what you can do to increase circulation and help the muscle relax:

· Grab hold of the spasm
· Simultaneously, press your index finger deeply into the ‘centre’ (the bulging central of the muscle) for 15 to 20 minutes. Its like a marma point, an acupressure point found in the centre of the muscle and pressing on it helps the muscle to relax.
· Take in deep breaths

· Contract and relax exercise
Alternate and repeat contracting and relaxing exercises to improve circulation and help release lactic acid, which will relax the muscles.

· Massage
Apply a little oil to the stomach muscle and massage gently. You can use Mahanarayan oil, sesame oil or other oil for massage. Massaging the painful cramped muscle will help relax muscle fibres, pacify the vata and improve circulation. This will give relieve to the spasm. After the massage, apply a little heat by using a hot water bottle and press it over the muscles to sooth and heal the muscle pain.

Vata people in winter, exposed to cold are susceptible to getting cramped muscles. Rubbing Mahanarayan oil and applying heat after the massage can help.

· Pressure point remedy
Another acupressure point is found at the midpoint of both the lips. Apparently, these energy points on the lips transmit messages to the brain, signaling the motor system to relax the muscles.

When you have a spasm on the upper part of the body like the arm or fingers, grab hold of the middle of your upper lip between your index finger and thumb. If spasm is in the legs or lower part of the body, do the same but grab the middle of the lower lips instead. Both both of these points, continue holding for about half a minute and pressure should be fairly strong but not hard enough to cause pain. This should relieve the spasm.

· Relaxing herbal tea
Make a tea using equal amounts of chamomile tea, confrey tea and jatamamsi tea (1/3 teaspoon each) to hep relax your muscles. You can use the tea individually.

· Ginger soak
If you have a cramp in the foot, have a ginger soak. Put 1 or 3 tablespoons of salt in a bucket of warm water and add ¼ cup of hot ginger powder and 2/3 cup baking soda per tubful of water. This is an effective way for relaxing muscles.

Remedy for abdominal cramps
Abdominal cramps may be linked with muscle cramps and eating a big meal, or lifting too heavy a load, putting a strain on the abdominal muscles may cause it. Other causes include acid indigestion, gas in the stomach or constipation.

· Herbal antacid formula
Use:

¼ teaspoon guduchi
½ teaspoon shatavatari
a pinch of shanka brasma

Take this whole amount 1 or 2 times a day after food.

· Shankavati herbal compound
Take 1 200 mg Shankavati tablet after dinner.

· Warm milk
The akaline property in milk helps pacify acidity in abdominal cramps. Besides, milk is also a good source of calcium, which helps muscles relax. Take a cup of warm milk at bedtime to help dispel spasm in the stomach or acid irritation. If you are lactose intolerant, take low lactose milk.

· Hingwastak churna
This helps relieve abdominal muscle cramps but may create some gas. Take ¼ teaspoon 2 times after lunch and dinner.

· Garlic compound
Also known as Lagsunadivati, garlic helps relax muscles and calms the vata dosha, relieving pain from the muscle cramps. You can use it for both smooth muscle cramps or skeletal muscle spasm. Take 1 tablet after dinner for 5 consecutive days. Odorless garlic tablets are also helpful but take as prescribed on the package.

· Triphala drink
See below.

Prevention for muscle cramps and spasm
· Dashamoola tea
Steep ½ teaspoon dashamoola powder in a cup of warm water for a few minutes. Take a cup or two of the tea every Saturday as a preventive measure to avoid future cramps.

· Yogaraj guggulu
· Vata in the muscles is the root cause of muscle cramps. Taking a yogaraj guggulu tablet of 200 mg, 2 to 3 times daily for about a month will effectively pacify vata.

· Triphala drink
You can improve absorption of calcium by taking this drink very early in the morning or at night before bed. Use ½ teaspoon triphala powder for every cup of boiling water. It is also helpful in relieving gas in the stomach and prevent getting muscle cramps in the abdomen.

· Mineral supplements
If you have muscle cramps often, you may lack calcium or your body is not absorbing enough calcium from your diet. Take some supplements of calcium, zinc and magnesium at bedtimes as prescribed. The formula should contain approximately a dose of 1,200 mg of calcium, 600 mg of magnesium and 60 mg of zinc.

[mikekoop]

Dear Mary

I had a very bad experience while on Mirapex. At first it seemed to do a good job at controlling my symptoms but I started to have severe swelling of my lower legs and feet which resulted in blistering as well. I experienced much soreness and stooping as well as alot of drooling. My doc did not believe it was the Mirapex at first but after a year of no improvement he took me off the Mirapex and put me on Sinemet. Within days I noticed a drastic change in my condition and I am now back to where I was when I was first diagnosed over 2 years ago.

[jcitron]

Mirapex helped me a little bit for a little while in combination with the Sinemet. What I didn't like was the nausea and extreme sleepiness that would hit me randomly. I was in the middle typing a paper for school, and ended up "checking for light leaks" for what seemed like a few minutes. Four hours later, I woke up with a string of b's going across the pages and the keyboard clicking at me continuously. Apparently, I had completely nodded off in the middle and didn't know what I was doing!

The muscle pains seem to be part of the equation. I have them in my shoulders, neck and bicep muscles. The biceps always feel like I've been punched or walked into a doorway.

John

[lou_lou]

Joe Neglia was a retired government intelligence worker with Parkinson's disease when he suddenly developed what he calls a gambling habit from hell. After losing thousands of dollars playing slot machines near his California home several times a day for nearly two years, Neglia stumbled across an Internet report linking a popular Parkinson's drug he used with compulsive gambling.

"I thought, 'Oh my God, this must be it,'" he said, after stopping the drug, Mirapex, "all desire to gamble just went away completely. I felt like I had my brain back."

A Mayo Clinic study published Monday in July's Archives of Neurology describes 11 other Parkinson's patients who developed the unusual problem while taking Mirapex or similar drugs between 2002 and 2004. Doctors have since identified 14 additional Mayo patients with the problem, said lead author Dr. M. Leann Dodd, a Mayo psychiatrist.

"It's certainly enough for us to be cautious as we are using it," Dodd said. "We wouldn't want them to have some kind of financial ruin or difficulties that could be prevented."

Excessive Gambling, Sex and Shopping
Dr. Leo Verhagen, a Parkinson's specialist at Chicago's Rush University Medical Center who was not involved in the study, says he and some colleagues all have a few patients who developed compulsive gambling while taking Mirapex, a drug that relieves tremors and stiffness. The behavior usually disappears when the drug dose is lowered, Verhagen said. He praised the Mayo article for raising awareness for doctors and patients.


Neglia, 54, now living in Millersville, Md., was not treated at Mayo or involved in the study. He said the problem is underreported "because of the embarrassment factor" and is one of several patients suing manufacturer Boehringer-Ingelheim Pharmaceuticals Inc., accusing the company of failing to adequately warn patients about the potential side effects.

California attorney Daniel Kodam, who filed the lawsuit last year, said he's spoken with more than 200 Mirapex patients who developed compulsive behaviors, including excessive gambling, sex and shopping. He is seeking to have the complaint certified as a nationwide class-action lawsuit. A similar suit has been filed in Canada, Kodam said.

Neglia said he has contacted the As Food and Drug Administration but that the agency has failed to act on numerous adverse reaction reports about Mirapex. An FDA spokeswoman said the agency is examining the reports to determine if there's any connection to the drug but declined to say how many it has received.

No Scientific Evidence

Katherine King O'Connor, a spokeswoman for the Ridgefield, Conn.-based Boehringer-Ingelheim Pharmaceuticals, said there's no scientific evidence that Mirapex causes the problem. Still, the company revised Mirapex's package insert earlier this year to include compulsive behavior among potential side effects after receiving "rare" reports -- all after the drug was approved for US use in 1997, O'Connor said.



Mirapex was among top-selling Parkinson's drugs last year, with more than $200 million in US sales, according to IMS Health, a pharmaceutical information and consulting firm.

Mirapex, or pramipexole, reduces tremors and the slow, stiff movements that are a hallmark of Parkinson's disease. It belongs to a class of drugs that mimic the effects of dopamine, a brain chemical that controls movement and is deficient in Parkinson's disease.

Mirapex targets dopamine receptors in a brain region associated with emotions that include pleasure and reward-seeking behavior, Dodd said. It can also cause extreme sudden sleepiness.

It is sometimes used alone or with the mainstay Parkinson's drug, levodopa.

'Like a Light Switch Being Turned Off'

Though a few of the Mayo patients took related drugs, Dodd said most used Mirapex. They included a 68-year-old man who lost more than $200,000 at casinos over six months and a 41-year-old computer programmer who became "consumed" with Internet gambling, losing $5,000 within a few months.

Dodd said Mayo doctors now ask patients using the drugs if they have suddenly taken up gambling. Affected patients are usually switched to different drugs or doses, and the result is often dramatic, "like a light switch being turned off when they stopped the drug," she said.

unfotunately many links have been totally removed or the site sold to
a casino site?

http://www.ocf.berkeley.edu/~pills/p...yarticles.html

Study Links Parkinson's Drug to Gambling
CHICAGO Jul 12, 2005 — Joe Neglia was a retired government intelligence worker with Parkinson's disease when he suddenly developed what he calls a gambling habit from hell. After losing thousands of dollars playing slot machines near his California home several times a day for nearly two years, Neglia stumbled across an Internet report linking a popular Parkinson's drug he used with compulsive gambling.

"I thought, 'Oh my God, this must be it,'" he said. Three days after stopping the drug, Mirapex, "all desire to gamble just went away completely. I felt like I had my brain back."

A Mayo Clinic study published Monday in July's Archives of Neurology describes 11 other Parkinson's patients who developed the unusual problem while taking Mirapex or similar drugs between 2002 and 2004. Doctors have since identified 14 additional Mayo patients with the problem, said lead author Dr. M. Leann Dodd, a Mayo psychiatrist.

"It's certainly enough for us to be cautious as we are using it," Dodd said. "We wouldn't want them to have some kind of financial ruin or difficulties that could be prevented."

Dr. Leo Verhagen, a Parkinson's specialist at Chicago's Rush University Medical Center who was not involved in the study, says he and some colleagues all have a few patients who developed compulsive gambling while taking Mirapex, a drug that relieves tremors and stiffness. The behavior usually disappears when the drug dose is lowered, Verhagen said. He praised the Mayo article for raising awareness for doctors and patients.

Neglia, 54, now living in Millersville, Md., was not treated at Mayo or involved in the study. He said the problem is underreported "because of the embarrassment factor" and is one of several patients suing manufacturer Boehringer-Ingelheim Pharmaceuticals Inc., accusing the company of failing to adequately warn patients about the potential side effects.

California attorney Daniel Kodam, who filed the lawsuit last year, said he's spoken with more than 200 Mirapex patients who developed compulsive behaviors, including excessive gambling, sex and shopping. He is seeking to have the complaint certified as a nationwide class-action lawsuit. A similar suit has been filed in Canada, Kodam said

[Ronhutton]

In all the reports about gambling, compulsive behaviour etc using Mirapex, I have not seen any information on dosage used. Could it be that above a certain threshold level, compulsive behaviour is shown? I take only 1mg of MIrapex per day, and never spend more than a few $ per week on the lottery.
I have had no inclination to gamble more.
Dose level is as important as the drug! There are many examples. Warfarin is a rat poison in high dose, but is used as a human drug in low dose.
A glass of whisky is very nice, but drink the bottle and it will kill you. Even salt in high dosage will kill, but is essential in low dose.
I wonder what dosage has been used in cases where gambling etc raises its head? It may be possible to establish a safe threshold.
Ron

[aftermathman]

no dosage from studies but the quoted max is 4.5mg per day.

I am on this dose and still feel the positives of Mirapex outweigh the negatives.

Now go to go, need to get to the bookies and from there to the donkey sanctuary. Who says life isn't worth living

Neil.