I've now been on the Keppra for two months.
I definitely think it's helping. Not 100%, but on the right track. Before, I was having mild daily activity punctuated by strong clusters. Now the mild daily activity is virtually gone, and the clusters have not been as intense as the previous ones.
My mood is mostly ok. Two weeks ago I had several days where I felt downright depressed; I can't even remember the last time I felt that bad, and depression is not something I normally struggle with. I don't know if it was related to the meds or not, but it passed after a few days.
I'm still tired ALL the time. I think this is more about needing a vacation than the med. I've been working non-stop for the past three years so that plus various kinds of stress makes me tired. I'm making a point to schedule in more down time, and am hoping to take some days away this summer.
The Keppra does not play nicely with wine. :( It seems like other drinks are ok, but when I drink more than one glass of wine I feel crappy and woozy. When I've googled this, it says that alcohol may increase the side-effects of the Keppra, but that's not what's happening. It's like the Keppra is increasing the effects of the alcohol. But only with wine, which is sad because that's my favourite thing to drink. Now I just have to keep my amounts low. Also, an acquaintance who is a doctor said that her migraines are worse when she drinks cheap wine, but not when she drinks high-quality wine. So I'm going to try some better wine and see if it helps (doctor's orders ;).
One more month to my next neuro appointment. My prediction is that we will be increasing the dosage since it is helping. Unless something changes between now and then (which is entirely possible given how strange and unpredictable this has been since the start!).
Thursday, May 5, 2016
Wednesday, April 20, 2016
4/20
Last night I had a meeting with a client who has brain health issues (not the same as mine). Her condition cannot be treated by western medicine and her own doctors are now telling her to explore alternatives. As a result, she has begun researching some less-conventional therapies.
In the course of her search she came across cannabis oil and has started using it. She has only been using it for a couple of weeks and is already noticing marked improvement in her symptoms. Last night she told me about this and also that it can be helpful with seizures as well.
Like me, she is skeptical of naturopathy and is not a fan of marijuana, but she is buying the oil with a higher ratio of CBD (which has the medicinal effects) and less THC (which gives the psychoactive effects).
So today I went to look it up; lo and behold, the Epilepsy Foundation has a whole page about this:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy
The gist of it is that studies are currently being done and there seems to be benefit to CBD for seizures. However, not enough research has been completed yet. They are recommending that if a person's seizures are not responding to regular anticonvulsants, CBD may be a good thing to try.
Something I will be thinking about and reading more about over the next while!
In other news, I have been having some mild episode activity over the past couple of days, more like the mild days I had before starting on the Keppra. So the jury is still out on whether the med is helping. I do think it's helping to a point, but not 100%. Will see.
In the course of her search she came across cannabis oil and has started using it. She has only been using it for a couple of weeks and is already noticing marked improvement in her symptoms. Last night she told me about this and also that it can be helpful with seizures as well.
Like me, she is skeptical of naturopathy and is not a fan of marijuana, but she is buying the oil with a higher ratio of CBD (which has the medicinal effects) and less THC (which gives the psychoactive effects).
So today I went to look it up; lo and behold, the Epilepsy Foundation has a whole page about this:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy
The gist of it is that studies are currently being done and there seems to be benefit to CBD for seizures. However, not enough research has been completed yet. They are recommending that if a person's seizures are not responding to regular anticonvulsants, CBD may be a good thing to try.
Something I will be thinking about and reading more about over the next while!
In other news, I have been having some mild episode activity over the past couple of days, more like the mild days I had before starting on the Keppra. So the jury is still out on whether the med is helping. I do think it's helping to a point, but not 100%. Will see.
Friday, April 15, 2016
The Neurologist is In
Today I went to the Brain Health Fair at the convention centre, put on by the American Academy of Neurology, which is having a conference here this week.
It was cool, largely geared toward kids but still interesting for adults. I got to hold an actual human brain in my hand (!) and the guy showed me the temporal lobe.
They also had booths where you could speak to a neurologist so I went to the epilepsy booth and talked to a neuro there. I told him I'm in the process of being diagnosed. He asked me to describe my episodes so I tried, and told him about the testing and meds I've been having. He said that it definitely sounds like temporal lobe seizures. A few things I gleaned from the conversation:
I've now been on the Keppra for a little over a month, and it does seem to be helping. Not 100% yet. I did have a small cluster of strong ones last week, but this cluster was only 3 episodes over 2 days, which is an improvement over past ones. Also, I've had virtually no other activity since starting this med. Before, I was having mild activity daily plus the strong clusters. Now the daily mild activity is almost completely gone. So if that continues between now and June (when I see the neuro again), it looks like I am on the right med. Even though I did have the cluster last week, that may mean that the med needs more time or I may need a slightly higher dosage. It's looking promising though!
It was cool, largely geared toward kids but still interesting for adults. I got to hold an actual human brain in my hand (!) and the guy showed me the temporal lobe.
They also had booths where you could speak to a neurologist so I went to the epilepsy booth and talked to a neuro there. I told him I'm in the process of being diagnosed. He asked me to describe my episodes so I tried, and told him about the testing and meds I've been having. He said that it definitely sounds like temporal lobe seizures. A few things I gleaned from the conversation:
- Seizure meds often deplete folic acid stores, so it's a good idea for me to take a folic acid supplement, especially since I'm in child-bearing years (he asked if I plan to get pregnant; I said no, but he recommended the folic acid anyway, "just in case").
- It's not weird that my symptoms started so late in life; they can start at any time with no prior symptoms (I kind of knew this but wanted to double check)
- It's definitely possible that it has been caused by early childhood brain trauma. When I was a toddler I fell out of my high chair and hit my head, lost consciousness, and stopped breathing briefly. I asked if this could be the ultimate cause, and he said it definitely could be.
- Even though my MRI did not show brain damage (per previous point), he said that many MRIs are not powerful enough to show things like what I may have had, and if I had a more powerful MRI it might show. However, he said it wouldn't change treatment so it would just be for curiosity if I were to have another MRI.
- He was happy to hear that the Keppra seems to be working already, and said that my dosage is quite low and there is room to up it a bit. He said that as long as my seizures are responding to meds, then surgery won't be an issue, but sometimes they do surgery when people aren't responding to meds.
- He said it sounds like I'm "in good hands" and on the right track.
I've now been on the Keppra for a little over a month, and it does seem to be helping. Not 100% yet. I did have a small cluster of strong ones last week, but this cluster was only 3 episodes over 2 days, which is an improvement over past ones. Also, I've had virtually no other activity since starting this med. Before, I was having mild activity daily plus the strong clusters. Now the daily mild activity is almost completely gone. So if that continues between now and June (when I see the neuro again), it looks like I am on the right med. Even though I did have the cluster last week, that may mean that the med needs more time or I may need a slightly higher dosage. It's looking promising though!
Sunday, April 3, 2016
Just like Dostoyevsky
It's now been 6 weeks since I last recorded an episode in my tracker.
Four weeks on the new med.
It seems to be working.
I did have one 6-week stretch before, but even then I was having super mild activity, just not enough to record.
Now I'm having basically nothing. To the point that I sometimes forget that I have this, or think, "it's stopped so maybe I don't need the meds" (yes, I know it's the meds making it stop!). Periodically I stop and think about it because it feels weird to suddenly have nothing. I was talking to a friend about that who has lived with chronic pain and she said it's the same with her... when she doesn't have pain she has to stop and think about it and it seems strange.
I'm going to give it one more monthly cycle before coming to any conclusions, because it could come back just as quickly. But so far so good... I think the new med is helping.
Which means I will probably get a diagnosis the next time I see the neuro (in June). Partial seizures, temporal lobe. He still says complex and I still say simple, but I'm going to ask him about that and why he thinks complex (Dr Google says it usually requires a loss of consciousness, or other physical symptoms, which I haven't had... but Dr Google isn't a neurologist).
For those who want more info about what this is and means, here's a good page explaining it:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy
According to that article, Dostoyevsky had temporal lobe seizures too! At least I can claim something in common with a great author. ;)
Four weeks on the new med.
It seems to be working.
I did have one 6-week stretch before, but even then I was having super mild activity, just not enough to record.
Now I'm having basically nothing. To the point that I sometimes forget that I have this, or think, "it's stopped so maybe I don't need the meds" (yes, I know it's the meds making it stop!). Periodically I stop and think about it because it feels weird to suddenly have nothing. I was talking to a friend about that who has lived with chronic pain and she said it's the same with her... when she doesn't have pain she has to stop and think about it and it seems strange.
I'm going to give it one more monthly cycle before coming to any conclusions, because it could come back just as quickly. But so far so good... I think the new med is helping.
Which means I will probably get a diagnosis the next time I see the neuro (in June). Partial seizures, temporal lobe. He still says complex and I still say simple, but I'm going to ask him about that and why he thinks complex (Dr Google says it usually requires a loss of consciousness, or other physical symptoms, which I haven't had... but Dr Google isn't a neurologist).
For those who want more info about what this is and means, here's a good page explaining it:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy
According to that article, Dostoyevsky had temporal lobe seizures too! At least I can claim something in common with a great author. ;)
Wednesday, March 23, 2016
Six months
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! :)
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! :)
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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