Scared? Who, ME?

I’m trying very hard not to get scared. So far, I haven’t succeeded.

The Lamictal rash continues to get worse. I’ve already reduced my daily dosage by 100 mg, but the rash keeps spreading. There’s no indication that it’s progressing into Stevens-Johnson syndrome thank goodness, but it’s still miserable. And nothing provides any relief. I’ve tried pretty much every over the counter and home remedy to ease the pain and itching, but nothing has touched it yet. And the Doctor has already put me through all the steroid and antihistamine treatments with no effect. I just have to suffer through it until the drug has cleared my system.

That’s the least of my worries.

Of course the real problem here is that I can no longer take Lamictal. It’s been a wonder drug up until now, completely getting the mood swings under control, with negligible side effects. But now I cannot take it anymore, and there are very few good substitutes, if any.

Which scares the hell out of me.

I’ve really become comfortable with being normal. I know that sounds a little silly; who wouldn’t be happy being healthy?  In my experience however, living with Bipolar Disorder, even when not in an episode I don’t ever feel I can relax and live naturally. I’m under constant vigil; monitoring my moods and looking for signs that it’s about to change. When the cycles never really stop, the illness stays a focal point for daily living. I could never stop feeling sick.

But after three years on the Lamictal my emotional swings had stabilized to the point I didn’t really think about it. I wasn’t living my life with bipolar disorder; I was living life. And a marvelous life it has been! I’ve been able to get back into so many things that I enjoy that I had lost. I was no longer spending all my energy fighting to control my moods, and have been able to refocus my energies on fun and productive activities. In fact, as a result of all the therapy and self evaluation that I’ve been through as part of my recovery I’ve been able to enjoy things even more than I ever have. Dancing for example. In the past I was always worried about how I looked, or what others thought about how I was doing. I’m very competitive, and I always wanted to be better than everyone else. But now? I’ve learned to just enjoy the music and move. The saying is ‘Dance like no one is watching’ became real for me. It was the simple joy of the dance that mattered, not the approval of others.

Work has been going okay too. I’ll admit, it’s been extraordinarily stressful lately. All of us in this job are grossly overworked and subjected to daily bombardments from all sides. It’s not just me that is so stressed out; it’s all of us. That’s not fun, but in truth I’ve not only been handling it, but I’ve been handling it as well as if not better than anyone else. All the coping techniques and relaxation exercises I’ve learned has been a tremendous help in dealing with such a stressful environment.

Yes, Lamictal has been a miracle drug for me.

And I can’t take it anymore.

I keep telling myself that this is not the end of the world, and I still have the knowledge gained and experience of maintaining this illness that is going to keep me from getting out of control again. And even though it might not be the same medication, there are other ones available that could potentially be just as effective. Not to mention there are new ones coming onto the market all the time. It might take some trial and error, but I have every reason to believe that I can continue to live my life without being totally dominated by the disease.

Yep. That’s what I keep telling myself. Now I just have to figure out how to believe it.

How quickly we forget! When things are going well, it’s easy to let go of the absolute horror that can come with a deep depression. Manias seem to be almost silly; surely I can recognize and control such outrageous behaviors! And the longer you succeed at living without the swings, the easier it becomes. Not that you ever really let your guard down, but it’s just not something you have to think about all the time. History and success builds trust in the medications, and you no longer are consumed by it.

Now, the ‘what ifs’ are raising their ugly heads.

I’m not going to be able to take this wonderful medication any more. Especially considering my work environment, I’m primed to have a manic episode. The pace is break neck at best, the hours are long, and the sheer volume of tasks is just completely overwhelming. With running wide open all the time it would be extremely easy to cross the line into mania.

Oh My God. A manic episode could be catastrophic.

Jobs are damned near impossible to get these days. And Lord knows I’ve lost more than one job when the Mania took over. Okay…I’ll be honest. I’ve eventually lost all my jobs when I’ve been manic. Without a job, this economy and the current state of unemployment benefits would give me about 3 months before I was destitute. And the odds of finding new employment are slim to none.

A major depression would be just as bad, if not worse. Not only would I be faced with the same financial crisis, but the depression itself could easily kill me. It almost did the last time.

I can’t keep doing this. I just can’t.

But wait a minute; I’m getting ahead of myself. Forewarned is forearmed, right? I DO have the experience and tools to deal with this disease. My awareness levels have never been more tuned. I know the signs, and have places to seek help when I need it. There is a strong support system behind me. Now that I’ve had a taste of living untouched by the illness, I am more motivated than ever to stay there. I won’t give up, and I won’t lose hope. To do so would just be putting a gun to my head, and I have way too much at stake to let that happen. This is just a bump in the road; a new challenge. Maybe I did have the bad reaction from the Lamictal, but it didn’t kill me. And it easily could have. It could have been a lot worse.

I firmly believe that everything happens for a reason, and those reasons are to shape who we become. I don’t think that I’m through giving all I can, or being all I can be yet, so losing this medication isn’t the end. It’s just the next phase.

So let’s get to it!

*****

I also feel compelled to add some information about the Lamictal Rash. First of all, it’s very rare. Clinical trials concluded that the incident of serious rash was only 0.08% in adults. And it is extremely rare for the rash to develop outside the first 6 weeks or so of therapy. While it can obviously happen after taking the medication for years, it is just something to be aware of, not be concerned about. And while every rash that develops while taking Lamictal should be examined, to my uneducated and layman view if the rash is due to the medication, it will be very evident. This is not a mild patch of skin irritation. And it doesn’t respond to normal remedies.

Lamictal Rash 20140327_203850

I would NEVER presume to offer medical advice. If there is ANY question as to a drug reaction, seek qualified medical help. And trust your Doctor. Just because one person has a bad reaction doesn’t mean everyone will. These drugs are too good and the need for them too great to let that tiny percentage who experience side effects scare anyone away.

This is just my story.

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5 Responses to Scared? Who, ME?

  1. I was on Lamictal in 2010 for a few month. During my fourth month on this medicine I developed a rash and bumps on my body. Over time my memory started to slip, my concentration crashed, and I was cramping and shaking 24/7. Eventually I went to my family doctor who then sent me to the ER. After some blood and urine test it was discovered that I had Lithium poising. The doctors told me I was extremely lucky I came in when i did because it was shutting my kidneys down and infecting my skin, by the way I was hardly urinating at all during this time.
    My recommendations to anyone on this drug to get continuous blood test to make sure they won’t end up like I did.

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  2. bpnana says:

    So sorry that you’re going through this. I hope it clears up soon, and you find another medication that works well…

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  3. Karla Smith says:

    I have been prescribed Lamictal not because I have bipolar disorder, but to “have more patience” with the stressors in my life. Though I am taking a small dosage, it appears that I am one of the unlucky ones – bumps with redness on my abdomem, a few on my legs, gastric problems also. It has helped me greatly. Does it cause GERD, Acid Reflux. Mine has been acting up, and I cannot distinguish if it is the Lamictal or Stress, which always triggers it.

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    • I would strongly suggest seeing a dermatologist as soon as you can. My General Practitioner Dr. assumed my rash was from the Lamictal and told me to discontinue immediately. When the rash didn’t go away, I saw a dermatologist who determined it was just stress, and treated it as such. I’m back on the Lamictal and the rash is gone.

      Best of luck!

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