So last Sunday the four of us were starting to eat a very late breakfast when Michele had about a two minute focal seizure/absence seizure. She was having a more difficult morning, where the prior week she was doing pretty well. In fact the day before, we had gone to Monterey Bay Aquarium and had a lot of fun even though she was showing some increasing signs of something going on - lethargy, sleepiness, irritability, 99 degree temperature.
While Michele was having this seizure, unable to move or talk, she was aware of us around her, and I was busily getting the Ativan/lorazepam from her backpack to put under her tongue. Then for the rest of the day these seizures repeated about once per hour to happening every half-hour. I increased her Keppra and the seizures tamed by about 9PM, although by her heart rate monitor/alarm it looked like she had about a 2 minute seizure again in the middle of the night. She has ictal-tachycardia, meaning that her seizures are usually accompanied by a fast heartrate. I designed a portable heartrate event alarm to alert me or her caregivers to her seizures - prolonged seizures can be deadly.
With the ongoing seizures and the change in meds that Michele's neurologist prescribed the next day, I chose to suspend the used of LDN/Naltrexone for a bit. Well, this week off the LDN treatments has been accompanied by severe increase in disability. I had to brush Michele's teeth today and she can't help with standing anymore. Her left arm is completely paralyzed, swallowing problems are getting severe, the left side of her face is drooping, her speech is difficult, etc.. Much of this may be attributable to the increased meds. We will know pretty quickly, as I resumed the LDN tonight, figuring that all the downer pills that she takes at bedtime should keep her sleeping well enough for the LDN to be able to do its job in the early AM.
Will post more later - Michele calls.
Sunday, June 17, 2007
Friday, June 1, 2007
Is it PMS on Steroids - or Something Worse?
Michele has had core temperature regulation problems ever since her first big MS attack in 1993 so I am not surprised that this continues to be a problem. Her ideal temperature is below 98 F degrees, and when it goes above 98.5, the MS damaged area's make themselves known.
It has been a while since my last post, and that is because the past week has been increasingly difficult - due to Michele's higher core temperature, not well controlled by 6-800mg of Advil, and also because of a very 'psychotic' reaction to low blood-sugar. This hypoglycemic rage is easily cured by grabbing the nearest bit of food and waiting for her to absorb it....but it has made for some tense moments in this household. Now I know what my grandma went through when trying to wake me in the mornings for school when my blood-glucose was around 60mg/dl.
The very encouraging part of the past couple of weeks is that even while having problems due to poor thermo-regulation, and having the hypoglycemic rage - Michele is still doing pretty well - tremendously better than a couple of months ago. For instance today, when she was standing up as I was transferring her to her wheelchair, I asked her to take a step and she promptly moved her right foot towards the wheelchair so that I could rotate her to her seat. Also, she grabbed the couple of years of books on CD and had our son put them into her computer and was enjoying her favorite author Mary Higgins-Clark for the better part of today.
She is now taking an increased dose of Keppra -1gram twice daily and that has kept the seizure aura's away except for a couple of days ago when she had to take an Ativan/Lorazepam.
The disturbing part of all this though is this increased emotional volatility. I just had to take a break from writing this entry to go listen to a tirade on my evil intentions and lying while Michele was in tears and redfaced angry. It is midnight and I did get her settled into bed around 10:30 - now she is enraged that I am not in bed too. I can hear her sobbing now through the door. Last week she slammed her hand down on the bed next to me - waking up in another rage-like state. This dark side is the same one that presents when her blood-sugar is low. Oh, it is PMS time, maybe I just need to chill for another week. If LDN turns out to cause 3 week long PMS emotions every month - I don't think the rest of the family can survive.
In light of all of this - I am trying to figure out if it is the MS that has affected a section of Michele's brain, causing this appearance of the dark side, or if this is due to the LDN treatment. Time will tell, I need to go give her 2mg of Ativan to calm her down; she really does need to sleep tonight as tomorrow is our daughter's birthday party at the local ice rink so we need to get up early enough to get Michele ready for a day out.
Goodnight.
It has been a while since my last post, and that is because the past week has been increasingly difficult - due to Michele's higher core temperature, not well controlled by 6-800mg of Advil, and also because of a very 'psychotic' reaction to low blood-sugar. This hypoglycemic rage is easily cured by grabbing the nearest bit of food and waiting for her to absorb it....but it has made for some tense moments in this household. Now I know what my grandma went through when trying to wake me in the mornings for school when my blood-glucose was around 60mg/dl.
The very encouraging part of the past couple of weeks is that even while having problems due to poor thermo-regulation, and having the hypoglycemic rage - Michele is still doing pretty well - tremendously better than a couple of months ago. For instance today, when she was standing up as I was transferring her to her wheelchair, I asked her to take a step and she promptly moved her right foot towards the wheelchair so that I could rotate her to her seat. Also, she grabbed the couple of years of books on CD and had our son put them into her computer and was enjoying her favorite author Mary Higgins-Clark for the better part of today.
She is now taking an increased dose of Keppra -1gram twice daily and that has kept the seizure aura's away except for a couple of days ago when she had to take an Ativan/Lorazepam.
The disturbing part of all this though is this increased emotional volatility. I just had to take a break from writing this entry to go listen to a tirade on my evil intentions and lying while Michele was in tears and redfaced angry. It is midnight and I did get her settled into bed around 10:30 - now she is enraged that I am not in bed too. I can hear her sobbing now through the door. Last week she slammed her hand down on the bed next to me - waking up in another rage-like state. This dark side is the same one that presents when her blood-sugar is low. Oh, it is PMS time, maybe I just need to chill for another week. If LDN turns out to cause 3 week long PMS emotions every month - I don't think the rest of the family can survive.
In light of all of this - I am trying to figure out if it is the MS that has affected a section of Michele's brain, causing this appearance of the dark side, or if this is due to the LDN treatment. Time will tell, I need to go give her 2mg of Ativan to calm her down; she really does need to sleep tonight as tomorrow is our daughter's birthday party at the local ice rink so we need to get up early enough to get Michele ready for a day out.
Goodnight.
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