My first "episode" was 6 months ago today. Actually my first FOUR episodes happened that day, all very strong. At that time I thought it was just something strange, and I didn't realize that it was going to result in months of testing, doctors, hospitals, medications, side effects, anxiety, and stress. More than that, the possibility that I may now have a chronic illness. It feels strange to think back to that first day and all that has happened since.
Now I'm in week #3 of med #2. The new med seems to be a LOT better than the old one. The only side effect I have noticed so far is that it makes me tired, and that should improve over the next couple of weeks. I have been at full dose since Sunday.
The last episode I entered in my tracker was a month ago. That was the last cluster of "bad" ones. I will give it another month before I decide whether the meds are helping, but I think they just may be. I have had almost no activity since that cluster, and what I have had was mild.
Next appointment with the neuro is early June, and by then I will have a very good idea of whether the med is doing the trick. If it is, then he will likely give me a diagnosis of complex partial seizures.
Still lots of unknowns.
I was never one to take my health for granted; I frequently was grateful for how healthy I've always been. But wow how my perspective has changed in the sudden transition from "I've always been perfectly healthy" to "This is my life now." It's a sharp reminder to never assume, even in our 20s and 30s, even with a healthy lifestyle, that we can keep that. We're not promised that.
Onward! :)
Wednesday, March 23, 2016
Tuesday, March 15, 2016
Life is Beautiful!
When I was on the carbamazepine, I knew that it was affecting my moods. I knew it was making me sad, and I described it as having my emotional baseline lowered. But until I stopped taking it, I didn't realize how much it was affecting my moods.
I took my last dose of that on the Thursday evening that I got the rash. By the following Monday, I felt incredibly happy and positive and energetic... more than I had since starting the med. I was a bit shocked at the difference, to be honest. Suddenly life was good again.
I'm now one week into the new med, Keppra (levetiracetam). The first week was at half dose, and now I'm at 3/4 dose. Will go up to the full amount this coming weekend.
The only side effect I've noticed so far from the Keppra is that I'm often sleepy and my eyes feel tired. That's manageable, and the pharmacist said it will go away after about a month. No dizziness or drowsiness. Overall I feel pretty good.
The neuro said this med can make me irritable and grouchy, but I haven't noticed that yet (I'm relying on my friends to tell me if I become more bitchy than usual! ;).
I haven't had any episodes in the past couple of weeks but that doesn't necessarily mean anything since I have had weeks of episode-free time even without the meds. So we'll see how it goes.
Also, I picked up my CD from the hospital with my MRI and CT scans on it.
My brain!
The ones with the eyes creep me out:
The CD has over 1000 images on it, in various sets from different angles and depths. It's pretty cool and I'm passing it to a friend who does 3D printing, in hopes he can print my brain for me!
Also, the reports said:
"The brain is normal. No evidence of mesial temporal sclerosis, migrational abnormality, mass, or scar is identified. The ventricles are normal. No areas of restricted diffusion are present."
"Noncontrast CT head was performed. No intracranial mass, hemorrhage or infarction is present. The ventricles and sulci are normal for age."
And yet there's still something wrong, which isn't showing on the scans. :/
I took my last dose of that on the Thursday evening that I got the rash. By the following Monday, I felt incredibly happy and positive and energetic... more than I had since starting the med. I was a bit shocked at the difference, to be honest. Suddenly life was good again.
I'm now one week into the new med, Keppra (levetiracetam). The first week was at half dose, and now I'm at 3/4 dose. Will go up to the full amount this coming weekend.
The only side effect I've noticed so far from the Keppra is that I'm often sleepy and my eyes feel tired. That's manageable, and the pharmacist said it will go away after about a month. No dizziness or drowsiness. Overall I feel pretty good.
The neuro said this med can make me irritable and grouchy, but I haven't noticed that yet (I'm relying on my friends to tell me if I become more bitchy than usual! ;).
I haven't had any episodes in the past couple of weeks but that doesn't necessarily mean anything since I have had weeks of episode-free time even without the meds. So we'll see how it goes.
Also, I picked up my CD from the hospital with my MRI and CT scans on it.
My brain!
The ones with the eyes creep me out:
The CD has over 1000 images on it, in various sets from different angles and depths. It's pretty cool and I'm passing it to a friend who does 3D printing, in hopes he can print my brain for me!
Also, the reports said:
"The brain is normal. No evidence of mesial temporal sclerosis, migrational abnormality, mass, or scar is identified. The ventricles are normal. No areas of restricted diffusion are present."
"Noncontrast CT head was performed. No intracranial mass, hemorrhage or infarction is present. The ventricles and sulci are normal for age."
And yet there's still something wrong, which isn't showing on the scans. :/
Friday, March 4, 2016
Side Effect Bingo!
Carbamazepine, week 6:
After the rough week I had last week, this one started out much better. I was starting to feel myself again, emotionally, and thinking that I can tolerate this med. "Maybe I'm finally adapting," I thought.
My neuro follow-up was today at 11:45am.
Around 10am, as I was getting into the shower, I noticed that my stomach was covered in tiny red bumps. Weird. Of course my mind went instantly to Death Rash but this didn't look like that, more like a heat rash of some sort. One of the side effects that I don't think I've mentioned here is the heat sensitivity. There are days when my cheeks feel incredibly hot, and often after a run I have had a bit of a heat rash on my cheeks/temples. So I thought maybe this rash on my belly was that. It wasn't painful or itchy at the time.
I went to my appointment and told the neuro all of the side effects I've had, including the heat rash/bumps. He asked a couple of questions to make sure it wasn't the Death Rash. He also asked if the meds are helping at all. I said if anything, they are making the episodes slightly milder, but the episodes are still happening. He said since I'm tolerating it we would try giving it more time and then if the med isn't working in a few more months we'll try a different one.
Finished my work day, went home, and the bumps on my belly seemed more red and intense. I debated going to a walk-in clinic, but opted to call the nurse's line instead. I spoke with both a nurse and a pharmacist; both were really helpful and talked through lots of options. Both said to me that as long as the rash doesn't get worse, spread, start to hurt/itch, I'm ok to just monitor it for now. So I didn't go to the walk-in.
9pm, I felt an itch on my neck. I went to scratch my neck and felt bumps. Checked it out in the bathroom and sure enough, the rash had spread up to my chest, neck, shoulders, and arms, and was starting to get itchy.
I considered that "getting worse" and decided to get it checked. Walk-ins closed at 9, so I went to Emerg (second time there in one month! yay!). Sat in Emerg for over an hour while they looked at people with breaks and sprains (don't they know I'm a P1?!?!).
Finally I saw a doctor, told him what was happening, showed him the rash. I also told him about how/why I thought it was a heat rash at first, some of the other side effects, and also that I'm still having episodes. He said, "this is not the med for you."
He told me to stop taking it right away, and gave me a prescription for a different med (Keppra). He also said he will send a note to the neuro to let him know, and I will also call the neuro's office in the morning.
A part of me is greatly relieved that I don't have to take Carbamazepine anymore. I asked whether it's ok to go cold turkey since I've read about withdrawal issues, and he said it should be fine.
Haven't researched the Keppra yet... hopefully it's not as bad!
After the rough week I had last week, this one started out much better. I was starting to feel myself again, emotionally, and thinking that I can tolerate this med. "Maybe I'm finally adapting," I thought.
My neuro follow-up was today at 11:45am.
Around 10am, as I was getting into the shower, I noticed that my stomach was covered in tiny red bumps. Weird. Of course my mind went instantly to Death Rash but this didn't look like that, more like a heat rash of some sort. One of the side effects that I don't think I've mentioned here is the heat sensitivity. There are days when my cheeks feel incredibly hot, and often after a run I have had a bit of a heat rash on my cheeks/temples. So I thought maybe this rash on my belly was that. It wasn't painful or itchy at the time.
I went to my appointment and told the neuro all of the side effects I've had, including the heat rash/bumps. He asked a couple of questions to make sure it wasn't the Death Rash. He also asked if the meds are helping at all. I said if anything, they are making the episodes slightly milder, but the episodes are still happening. He said since I'm tolerating it we would try giving it more time and then if the med isn't working in a few more months we'll try a different one.
Finished my work day, went home, and the bumps on my belly seemed more red and intense. I debated going to a walk-in clinic, but opted to call the nurse's line instead. I spoke with both a nurse and a pharmacist; both were really helpful and talked through lots of options. Both said to me that as long as the rash doesn't get worse, spread, start to hurt/itch, I'm ok to just monitor it for now. So I didn't go to the walk-in.
9pm, I felt an itch on my neck. I went to scratch my neck and felt bumps. Checked it out in the bathroom and sure enough, the rash had spread up to my chest, neck, shoulders, and arms, and was starting to get itchy.
I considered that "getting worse" and decided to get it checked. Walk-ins closed at 9, so I went to Emerg (second time there in one month! yay!). Sat in Emerg for over an hour while they looked at people with breaks and sprains (don't they know I'm a P1?!?!).
Finally I saw a doctor, told him what was happening, showed him the rash. I also told him about how/why I thought it was a heat rash at first, some of the other side effects, and also that I'm still having episodes. He said, "this is not the med for you."
He told me to stop taking it right away, and gave me a prescription for a different med (Keppra). He also said he will send a note to the neuro to let him know, and I will also call the neuro's office in the morning.
A part of me is greatly relieved that I don't have to take Carbamazepine anymore. I asked whether it's ok to go cold turkey since I've read about withdrawal issues, and he said it should be fine.
Haven't researched the Keppra yet... hopefully it's not as bad!
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