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!

Acceptance...or not

I go back and forth with my acceptance of Parkinson’s disease. When I was first diagnosed, there was a part of me that was just glad to finally have a reason for some of the symptoms. At first, I actually felt a little less weird…because now I had a reason why I sometimes peed on myself and why my hand wouldn’t stop shaking. I could stop thinking I had become clumsy because I would fall down or lose my balance at odd times. It wasn’t me, it was the Parkinson’s.

That feeling didn’t last long. After a few weeks on the medicine, I was frustrated. I was coming home from work and getting into bed almost immediately. I felt like it took all my energy just to get through my workday. Weekends weren’t much better. The only way to make it through a whole day was to take a nap after taking the Requip. I thought it would get better after a few months on the meds, and I did learn to adjust a little. Occassionally, my boss would let me work from home, and on those days, I could stay up and do supper and bedtime with the kids. So that helped sometimes. But I was still mad about the things that I felt Parkinson’s was taking away from me.

I just wanted to be normal! I wanted to have energy. I wanted to be like the other moms who went to work everyday and still were able to cook dinner when they came home and tuck their kids in at night. I wanted to be able to clean my house…yes, really. I like a clean house and I really don’t mind cleaning. But I hated seeing my husband do it all. It made me feel like a failure. We started planning things around me…if we were going to do something on Saturday that might wear me out, we wouldn’t do anything on Sunday. I hated it! I wanted to be able to go to the zoo or the water park with my family without being worn out for days afterwards or without us having to leave early because “Mommy’s too tired.” I wanted to feel better. I wanted to be healthy.

And I wanted to have a baby…

The Diagnosis

Diagnosing Parkinson’s disease is tricky. There is no “test” to diagnose Parkinson’s disease. Doctors depend on their powers of observation and the elimination of other diseases to diagnose Parkinson’s. When a diagnosis of Parkinson’s is given, it is confirmed by prescribing levodopa or a dopamine agonist. If the symptoms respond to the medication, then the Parkinson’s diagnosis is confirmed. I began taking Requip XL (a dopamine agonist) at a low dosage and saw a response in my symptoms. With Requip, you have to step up your dosage until you reach the level that’s right for you. As I increased my dosage to the level my doctor thought was optimal, my symptoms practically disappeared. My tremor was gone for the most part (as the medication would wear off, it would start to come back). I actually had bladder control (something I had not had in years and didn’t even realized was possible). We even took a trip where I rode in the car for 5 hours straight without a single stop to use the bathroom. Anyone who has taken a trip with me in the last 10 years will tell you that is practically a miracle!

Of course, with Requip came side effects. The medicine made me tired in a different way than Parkinson’s did. It can cause “uncontrollable sleepiness.” People have fallen asleep while driving, eating, etc. I referred to it as “waves of exhaustion.” It would come over me very suddenly and I could fall asleep at my desk at work with my head in my hands. Before taking Requip, I would sometimes come home from work and crash – literally climb in bed and fall asleep at 5:30 in the afternoon. When I first started taking Requip, I was sometimes still doing that. I didn’t consider that much of a life improvement. It also made me sick to my stomach. I learned that I could eat a certain foods when taking my Requip and that would help with the nausea. The sleepiness faded somewhat over time, but I still dealt with some of those "waves of exhaustion" right after taking my medicine.

It was also very expensive. Okay, so that’s not really a side effect, really, but with the other medication called Azilect that I was placed on to try and prevent the progression of Parkinson’s disease, the expenses were starting to really add up. I’m not completely cheap, but I really didn’t like that we were spending more on my medicine each month than we were on our car payment.

But I was symptom free while on Requip. With the exception of the sleepiness, which was extremely annoying, the Requip did help, even with symptoms that I wouldn’t have recognized as symptoms, such as my recent tendency to cry over the slightest thing. I’m not a crier, so this was new and frustrating for me (and those around me!). One of the things dopamine does is make you feel good. When you feel good after eating something wonderful or having sex, that’s dopamine being released in your brain. Not having enough dopamine can make you feel sad and depressed at times. So in addition to relieving my other symptoms. Requip gave me back some dopamine and made me feel better. It wasn’t like taking a happy pill or anything. I just felt more like myself. That was definitely a good thing.

The worst thing about taking Requip was what it represented. The fact that my symptoms decreased or went away while I was on the medicine meant that I did indeed have Parkinson’s disease. When my neurologist saw the improvement in all of my symptoms, he said there was no way to fight it anymore and that I definitely had Parkinson’s disease.

You can read about my quest for a diagnosis here.