Requip Withdrawals

I have to talk a little bit about coming off my medicine only because what I thought would be a somewhat simple process was anything but. In a previous post I talked a little bit about how I had to step up my dosage of Requip to reach the level that was right for me. To come off of Requip, I couldn’t just stop taking the medicine. I had to step down the dosage.

IT WAS AWFUL.

After the first week at a lower dosage, I started hurting. I was expecting my symptoms to come back. I wasn’t expecting to have withdrawals. It’s not like I was taking narcotics or pain meds.

The second week was even worse. I ached all over. My legs felt like they needed to be cut off. A friend who is a nurse told us that coming off of Parkinsons’s medication is often compared to the withdrawals a cocaine user goes through when he is trying to get clean. It’s really no wonder that once people start taking drugs, they keep taking them. I completely understood the need for relief from the pain.

Sitting on the couch or laying in bed wishing for relief from the pain, I often felt like if I could get relief from just taking another Requip, I would. Two things kept me going. The first is obviously that I really wanted to get pregnant and knew I had to be off the medicine to be able to do that. The second is that I knew that even if I went into the kitchen and took a Requip, the pain would not go away or let up. I would have to take it for several days for it to build back up in my system before I would get any relief.

Thankfully, it only took a few weeks to step down off of the Requip. I finished my other medications around the same time. That was at the beginning of April. It was now time to try to get pregnant!

What Causes Parkinson's Disease?

There is currently no cure for Parkinson’s disease. Medications treat only the symptoms and come with some pretty nasty side effects, as I am quickly learning.

After being diagnosed with Parkinson’s, I began trying to discover what could have caused me to develop this disease at such a young age. There are many theories on what causes Parkinson’s. The disease itself develops when the dopamine producing cells in the brain begin to die off. But doctors do not know why these cells begin to die. The traditional thought around the subject is that there are environmental triggers that cause the disease. This is because certain professions where workers are exposed to toxic chemicals seem to have higher instances of the disease. However, newer research suggests that mutations of certain genes can either cause Parkinson’s or make a person more likely to develop Parkinson’s. The cause could also be a combination: the genes make you more susceptible, but then something in your environment triggers the actual loss of dopamine producing cells.

Since some families have multiple people with Parkinson’s, researchers have long looked for a hereditary tendency towards Parkinson’s. It has been hard to establish a completely genetic link to Parkinson’s, however, since families also share many environmental factors. No one in my family history has Parkinson’s disease. Both my parents are living - neither has Parkinson’s. Two of my four grandparents are living, neither has Parkinson’s. My deceased grandparents did not have Parkinson’s either. So how did I get it?

A mutation in a gene has been linked to higher rates of Parkinson’s. As part of a research study, I was tested for this gene mutation thought to cause Parkinson’s disease. I do not have this particular gene. But, this is a big area for research in Parkinson’s right now, and scientists are discovering more genes that could be linked to the disease.

I looked at environmental factors. Even thought we don’t know what causes Parkinson’s, one thing is clear. Certain areas of the United States (and the world) have higher rates of Parkinson’s. This is thought to be because of chemicals or pesticides used in those areas. I do not live in a rural farming area and I have never worked in a factory. I grew up in the suburbs and have worked in an office building for most of my adult life.

I have decided I will probably never know what caused my Parkinson’s disease. And even if I discovered how I got it, I can’t change the fact that it’s here.

About Parkinson's Disease

Parkinson’s disease is a progressive, degenerative neurological disorder resulting from the loss of dopamine producing cells in the brain. There is no cure for Parkinson’s disease and no one knows what causes these cells to die. The loss of these dopamine-producing cells can cause a variety of symptoms, such as tremor, loss of balance, and muscle stiffness. Medications treat the symptoms of the disease, but often come with harsh side effects. Additionally, these medications are only helpful for a time before the patient builds up a tolerance to the medication, which causes the medicine to lose its efficacy.

In addition to the primary motor symptoms of tremor, loss of balance, stiffness, and slowness of movement, many Parkinson’s patients also struggle with non-motor symptoms. Some of these can be far more troubling to the patient than the motor symptoms. These symptoms can include sleep difficulties,  blood pressure changes, difficulty regulating body temperature, and problems with urinary frequency. A Parkinson’s patient may also experience anxiety, depression and mood changes, slower cognitive functions such as a loss of memory or difficulty multi-tasking, and behavioral changes, such as binge eating, hyper-sexuality or gambling. The patient may also have numbness, tingling, and pain. Believe me, pain is a symptom. I had read that Parkinson’s is a painless disease, but this is not true. Many of the Parkinson’s patients I have spoken with cite pain as a symptom.

There are a lot of Parkinson’s symptoms. Some patients have a lot of symptoms, some have just a few. There is no “standard” set of Parkinson’s symptoms. Many people refer to Parkinson’s disease as a “boutique” disease because each case is individual.

Parkinson’s disease can be difficult to diagnose, because there is no way to test for the disease. Doctors must rely on their powers of observation and the patients response to anti-Parkinsonian drugs. Many young onset Parkinson’s patients spend several years trying to obtain the correct diagnosis for their symptoms.

Some resources that give more information on Parkinson’s disease:

American Parkinson’s Disease Association

National Young Onset Center

Michael J Fox Foundation

The Decision

The majority of people with Parkinson’s are over the age of 60. They obviously don’t deal with issues such as pregnancy. So there is not a lot of research out there that tells how Parkinson’s affects a pregnancy or how a pregnancy affects Parkinson’s. One small study that tracked 17 pregnant women with Parkinson’s showed that pregnancy was associated with a permanent worsening of symptoms in 10 of the women. All the babies were born healthy and there were no complications during the pregnancies themselves. So the risk to the baby was no greater than that of any normal pregnancy. That was good news.

The bad news: no medicine during pregnancy or breastfeeding or even while trying to conceive meant that I could be off my medicine for a couple of years. This was a pretty big deal since I was taking a medicine specifically to slow the progression of the disease. At the recommendation of my neurologist, I was also taking a couple of supplements that had been shown to slow the Parkinson’s progression. All of that would have to go. So I would be giving up my meds, and taking a risk that the pregnancy might permanently worsen my symptoms.

My husband was very scared about the worsening of my symptoms. Me? I wanted a baby bad enough that I was willing to risk a worsening of my symptoms. Of course, then that brought up a whole new round of questions I had to consider. Is it fair to have a baby and possibly not be able to give 100% physically to him? I struggled with this, and with whether I was being selfish or not. There were just so many unknowns and no way to know how my symptoms would progress or if they would progress at all. I always just kept coming back to the baby. I just wasn’t ready to give up that dream.

We knew that if we decided to try to have a baby that we didn’t want to take any drastic measures to get pregnant. With my first, getting pregnant took more than 2 years. I had my Fallopian tubes cleared twice and had surgery for Stage 4 endometriosis. I took Clomid for 7 months before conceiving. However, after she was born in November, I was pregnant again in February (even though I was exclusively breastfeeding). That pregnancy ended in a miscarriage. By July of the same year, I was pregnant with my son, even though I was still breastfeeding. But it had been 6 years since he was born, and since endometriosis can grow back, it was really hard to guess at how easily I might conceive or if I would even be able to get pregnant at all.

After consulting with both my neurologist and my OB, we decided I would come off my meds 1 month before we started trying to get pregnant. That would give the Parkinson’s meds time to leave my system. My plan was to (hopefully) conceive within 6 -9 months, be pregnant for 9 months, and have some time to breastfeed the baby. That would limit my time off meds to a little over 2 years, which I considered a reasonable amount of time off. I didn’t really feel like I had 2 years, or even a whole year, to try and conceive. I needed to be back on my medicine within 2 years or so and if it took a long time to get pregnant that would not be possible. So I was praying that I would get pregnant very quickly!