I started this med last week on a quarter dose for three days, then a half dose for 5 days. Today is day 8 so I will be bumping up to 3/4 dose tomorrow.
Every day I have a moment where I self-assess. How am I feeling? Any side effects?
The only thing I've noticed so far (which may not even be related to the med) is that my regular emotions--both good and bad--seem to be amplified. The reason I say it may not be related to the med is that I'm also under a lot of stress this week, and stress can have that same effect.
Monday and Tuesday were highly emotional for me, again triggered by stress. After I went for a hard run Tuesday night, I felt a ton better. Today I feel much more myself.
So for week 1... no issues.
Oh, and I'm barring myself from alcohol for a couple of weeks while I see how my body and mind react. The reason is that the first night I started the med, I had a couple of drinks--then woke up in the middle of the night with a killer stomach cramp. Don't know if it was the med or the alcohol or both or neither, but I figure it's safer not to have any alcohol for now, at least until I see how things go.
coffee, on the other hand....
Wednesday, January 27, 2016
Thursday, January 21, 2016
Gratitude and Frustration
After I posted my update yesterday, so many comments, messages, and phone calls came. Everyone is so supportive, and I'm so grateful for that. It's so good to know I have a support crew to depend on if I need that over the next while.
What has been frustrating me--and I wasn't able to express it until I said it out loud on the phone a few minutes ago--is that everyone thinks "all the tests came back normal" is good news. I know you all mean well, and I know it's a good thing that I don't have, say, a malignant brain tumour. But it's not good news.
"All the tests came back normal" simply means we still don't know what's wrong. I may or may not be having seizures. So we try a seizure med (which may or may not result in mood changes, suicidal ideation, blood/marrow problems, allergic reactions, etc.). The seizure med may or may not make a difference. If it does, yay(?) I have epilepsy. If it doesn't, it's back to trial and error with a different med. Maybe more testing.
Best case scenario(?) this first med works and I get diagnosed with seizures/epilepsy and potentially lose my licence. But life will go on and I will manage that.
Worst case, I continue trying meds and tests and doctors for months or years. Some people go through all of this and never find out what was wrong.
This is why I was so upset last night, and why I'm not sure how to respond to all the "this is good news" comments. To me it's not good news.
But, I'm not dying. And like I said, I am super grateful for all the support. I don't want this to come off as rude or ungrateful... I just feel the need to express why I'm not happy about "all the tests came back normal". :/
In any case, I know I will be ok and that you all will be there for me in the process. :)
Now excuse me while I go take out my frustration on a punching bag.... :)
What has been frustrating me--and I wasn't able to express it until I said it out loud on the phone a few minutes ago--is that everyone thinks "all the tests came back normal" is good news. I know you all mean well, and I know it's a good thing that I don't have, say, a malignant brain tumour. But it's not good news.
"All the tests came back normal" simply means we still don't know what's wrong. I may or may not be having seizures. So we try a seizure med (which may or may not result in mood changes, suicidal ideation, blood/marrow problems, allergic reactions, etc.). The seizure med may or may not make a difference. If it does, yay(?) I have epilepsy. If it doesn't, it's back to trial and error with a different med. Maybe more testing.
Best case scenario(?) this first med works and I get diagnosed with seizures/epilepsy and potentially lose my licence. But life will go on and I will manage that.
Worst case, I continue trying meds and tests and doctors for months or years. Some people go through all of this and never find out what was wrong.
This is why I was so upset last night, and why I'm not sure how to respond to all the "this is good news" comments. To me it's not good news.
But, I'm not dying. And like I said, I am super grateful for all the support. I don't want this to come off as rude or ungrateful... I just feel the need to express why I'm not happy about "all the tests came back normal". :/
In any case, I know I will be ok and that you all will be there for me in the process. :)
Now excuse me while I go take out my frustration on a punching bag.... :)
Wednesday, January 20, 2016
It LOOKS ok....
So, I had my second neuro appointment today.
As I mentioned last week, my symptoms had come back strongly after being really mild for awhile. I had two strong episodes on Jan 10, and one each on Jan 12 and 13 (both of those two were during strenuous exercise, though that hasn't generally been the pattern so maybe just coincidence).
This week has been ok, though I was feeling a lot of anxiety today about the appointment. I was "hoping for the best" but wasn't really sure what that would be... none of my options seem great, except maybe the migraine option.
Anyway, all my tests came back normal.
That's both good news and bad news. It rules out major things like brain tumours, lesions, and mesial temporal sclerosis. It does not rule out seizures/epilepsy.
The long and short is that I still don't know what's wrong with me, but seizures are becoming more probable. Which is really what I've thought all along, even though I was really hoping it would be something else.
I asked about getting other tests done and he said at this point they aren't likely to show anything different. He seems to be leaning toward complex partial seizures. I still think simple partial, but he keeps saying complex (I don't have any motor responses, that I know of, and the psychic simple partial matches my deja vu experience).
So he said the next logical step is to start me on some seizure meds and see what happens. Sometimes they use the meds to diagnose. If these meds clear up my symptoms, we'll know that that's what it was. If the symptoms continue on the meds, we try something else. In any case, he's starting me on a med that is commonly used to treat partial seizures. It's called carbamazepine.
The meds can have side effects on blood/bone marrow so I have to go for blood tests in a few weeks to make sure everything is ok. They can make me tired/dizzy, but he said it shouldn't be bad because we're doing a very gradual start and gradual increase. They can also cause mood changes and/or suicidal thoughts.
I go back March 3 to see how things are going. In the meantime I just need to observe whether I think the meds are helping or not. It may take a few weeks because my symptoms go through mild phases where I might not notice anything for a bit.
Oh, and I got to see my brain. He showed me the CT and MRI images, and explained what they're looking for on each one. My brain LOOKS healthy. Nothing obvious on the images. Again, both good news and bad. :/
I have to say I'm feeling rather upset after the appointment. I shouldn't be. I mean, it is what I expected. And if it is something I can manage with meds, it's not the end of the world. Really things could be a LOT worse. Even without meds, my symptoms are manageable. But I'm still feeling stressed/emotional about it all.
Will feel better once I've had some sleep and time to process.
As I mentioned last week, my symptoms had come back strongly after being really mild for awhile. I had two strong episodes on Jan 10, and one each on Jan 12 and 13 (both of those two were during strenuous exercise, though that hasn't generally been the pattern so maybe just coincidence).
This week has been ok, though I was feeling a lot of anxiety today about the appointment. I was "hoping for the best" but wasn't really sure what that would be... none of my options seem great, except maybe the migraine option.
Anyway, all my tests came back normal.
That's both good news and bad news. It rules out major things like brain tumours, lesions, and mesial temporal sclerosis. It does not rule out seizures/epilepsy.
The long and short is that I still don't know what's wrong with me, but seizures are becoming more probable. Which is really what I've thought all along, even though I was really hoping it would be something else.
I asked about getting other tests done and he said at this point they aren't likely to show anything different. He seems to be leaning toward complex partial seizures. I still think simple partial, but he keeps saying complex (I don't have any motor responses, that I know of, and the psychic simple partial matches my deja vu experience).
So he said the next logical step is to start me on some seizure meds and see what happens. Sometimes they use the meds to diagnose. If these meds clear up my symptoms, we'll know that that's what it was. If the symptoms continue on the meds, we try something else. In any case, he's starting me on a med that is commonly used to treat partial seizures. It's called carbamazepine.
The meds can have side effects on blood/bone marrow so I have to go for blood tests in a few weeks to make sure everything is ok. They can make me tired/dizzy, but he said it shouldn't be bad because we're doing a very gradual start and gradual increase. They can also cause mood changes and/or suicidal thoughts.
I go back March 3 to see how things are going. In the meantime I just need to observe whether I think the meds are helping or not. It may take a few weeks because my symptoms go through mild phases where I might not notice anything for a bit.
Oh, and I got to see my brain. He showed me the CT and MRI images, and explained what they're looking for on each one. My brain LOOKS healthy. Nothing obvious on the images. Again, both good news and bad. :/
I have to say I'm feeling rather upset after the appointment. I shouldn't be. I mean, it is what I expected. And if it is something I can manage with meds, it's not the end of the world. Really things could be a LOT worse. Even without meds, my symptoms are manageable. But I'm still feeling stressed/emotional about it all.
Will feel better once I've had some sleep and time to process.
Wednesday, January 13, 2016
there's no name for this
So, I had a pretty strong episode yesterday in the middle of kickboxing class. I don't think anyone noticed. When it happened, we were sitting on the floor stretching (between warm-up and the rest of the workout). We were sitting there and it hit me and took me a few seconds to come out of it, and just then everyone was starting to stand up. The guy who was sitting right in front of me (facing me) offered his hand to help me up, so part of me wonders if he noticed that something was happening, or if he was just being a gentleman. Either way, I let him give me the hand up. After that I felt fine.
I wish I could adequately describe what it feels like, but it's really hard to explain. It's like I'm suddenly dreaming, and the dream always feels like I've had it before. There are images, emotions, and with the strong ones I get dizzy and the dream blocks out what else is going on around me, but then it just fades off and is gone. The mild ones don't block out what's happening around me and I'm fully conscious while it's happening. The really strong ones make me dizzy and overtake me for a minute. They all just fade off in the end and I can't for the life of me remember what the dream was about (because it wasn't really a dream, obviously, just something misfiring in my brain!).
Back in the days of mystics they probably would have thought this was something spiritual. I know with other kinds of seizures or strange episodes they usually thought there was something spiritual happening, possessions and things. I can sort of understand why now, because it just completely overtakes me and I can't force myself out of it... it has to go away on its own. The strong ones can last up to a minute or two (at least, that's how it feels), but the mild ones are extremely brief, a few seconds.
I wish I could adequately describe what it feels like, but it's really hard to explain. It's like I'm suddenly dreaming, and the dream always feels like I've had it before. There are images, emotions, and with the strong ones I get dizzy and the dream blocks out what else is going on around me, but then it just fades off and is gone. The mild ones don't block out what's happening around me and I'm fully conscious while it's happening. The really strong ones make me dizzy and overtake me for a minute. They all just fade off in the end and I can't for the life of me remember what the dream was about (because it wasn't really a dream, obviously, just something misfiring in my brain!).
Back in the days of mystics they probably would have thought this was something spiritual. I know with other kinds of seizures or strange episodes they usually thought there was something spiritual happening, possessions and things. I can sort of understand why now, because it just completely overtakes me and I can't force myself out of it... it has to go away on its own. The strong ones can last up to a minute or two (at least, that's how it feels), but the mild ones are extremely brief, a few seconds.
Sunday, January 10, 2016
anxiety
For the past several weeks my episodes have been extremely mild and light, barely there. I just have this fleeting moment of memory, but without the dizziness or intensity of before. So I've been thinking it's getting better.
Until just now... I just had a really strong one, strongest one since possibly November. And I had the feeling that it was a replica of a previous one (same location, time of day, etc.) but when I look back in my log there isn't one that matches. Maybe that's part of the deja vu... feeling like I've had this same *episode* before, even though I haven't.
This one also came with a wave of anxiety that made my body tingle. Anxiety can be part of the temporal lobe response and was a bigger factor in some of my earlier episodes, back in Sept/Oct. Today I don't know if it was part of the episode or if I'm feeling anxiety because of such a strong episode after thinking I was getting better.
I don't know. But I'm glad that my neuro appointment is coming up soon (Jan 20). And hoping he has something helpful to tell me. I thought it was going away, and now I'm upset because it's not.
Until just now... I just had a really strong one, strongest one since possibly November. And I had the feeling that it was a replica of a previous one (same location, time of day, etc.) but when I look back in my log there isn't one that matches. Maybe that's part of the deja vu... feeling like I've had this same *episode* before, even though I haven't.
This one also came with a wave of anxiety that made my body tingle. Anxiety can be part of the temporal lobe response and was a bigger factor in some of my earlier episodes, back in Sept/Oct. Today I don't know if it was part of the episode or if I'm feeling anxiety because of such a strong episode after thinking I was getting better.
I don't know. But I'm glad that my neuro appointment is coming up soon (Jan 20). And hoping he has something helpful to tell me. I thought it was going away, and now I'm upset because it's not.
Friday, January 1, 2016
boring update
I haven't updated this in a bit so I thought I should... though there is not much to tell!
I got called for a cancellation spot on my MRI, which meant that I had the MRI on December 21 instead of Jan 19. This was really good news because it means my neuro will have all the test results by the time I see him on Jan 20.
And I have to say, I am pretty impressed that within 5 weeks of meeting the neuro, my first round of testing was done. Some people have to wait months and months for these tests. I am grateful for getting in quickly, and I am extremely grateful for the Canadian health care system. In other countries I would be paying thousands for these tests... or putting them off because of the cost. Our system isn't perfect but I love that in the stress of having something wrong with me, I don't have to stress about the cost of having something wrong with me!
The MRI was an interesting experience. I was on day 2 of a cold and had a splitting headache so the noise of the MRI was hard to manage. Aside from that it was painless.
My episodes continue almost daily, but with a much lower intensity than a couple of months ago. Often it's just a twinge. I can't explain the twinge, but I feel it in both my brain and in my stomach simultaneously. Sometimes it's that feeling of trying to remember a memory or feeling and being unable to grasp it. I haven't had any of the major episodes with dizziness/nausea since November. I take that as an improvement.
Now I'm just waiting for my Jan 20 appointment and hoping there are some answers in all these tests!
I got called for a cancellation spot on my MRI, which meant that I had the MRI on December 21 instead of Jan 19. This was really good news because it means my neuro will have all the test results by the time I see him on Jan 20.
And I have to say, I am pretty impressed that within 5 weeks of meeting the neuro, my first round of testing was done. Some people have to wait months and months for these tests. I am grateful for getting in quickly, and I am extremely grateful for the Canadian health care system. In other countries I would be paying thousands for these tests... or putting them off because of the cost. Our system isn't perfect but I love that in the stress of having something wrong with me, I don't have to stress about the cost of having something wrong with me!
The MRI was an interesting experience. I was on day 2 of a cold and had a splitting headache so the noise of the MRI was hard to manage. Aside from that it was painless.
My episodes continue almost daily, but with a much lower intensity than a couple of months ago. Often it's just a twinge. I can't explain the twinge, but I feel it in both my brain and in my stomach simultaneously. Sometimes it's that feeling of trying to remember a memory or feeling and being unable to grasp it. I haven't had any of the major episodes with dizziness/nausea since November. I take that as an improvement.
Now I'm just waiting for my Jan 20 appointment and hoping there are some answers in all these tests!
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