Re: brain won't shut down to sleep/Caroline

[Guest guest]

Caroline,

We have no idea what type of mito we have. I have often wondered if it was MELAS. Caden, my oldest affected child ( 6yrs ) had a stroke before he was ever born with NO real neurological effects or evidence per MRI. He had really obvious facial paralysis on one side. Now, it's only minor.

I am fairly certain I have been screened for the most common ones such as MELAS, MERF, etc.. I know nothing has ever shown up as far as DNA mutations etc..

We thought for a while that we only had MADD/GA2 - A Fatty Oxidation Disorder but have learned that it's only secondary to the Primary (unidentified mito. condition). We have excellent Metabolic doctors, so I'm confident we are in good hands but nothing seems to be simple with mitochondrial diseases. I just don't know how to stop this cycle. I have only been this bad one other time in my life and it was by the grace of God that I pulled through. I only had a local neurologist who had NO clue what was going on. He first thought it was atypical MS due to the large area on my brain. It was not in multiple spots.. It's all one big connected area. That's why he thought it was atypical MS.

After all, MS is called Multiple Sclerosis because of the multiple demylenating areas on the brain. My met. dr says it's not demylenation like I was told. It's scaring from a stroke. I am patiently waiting on my parents to arrive. They have to drive over an hour to get to my house. It's very rare that I have to call them for help but they are always there for me when I need them. Thank God! I have NO one else. My husband has to work. (someone has to). He's such a tremendous support though. He came home last night and put up loads of laundry for me. I feel so guilty sometimes because he had no idea what he was marrying into. I knew I had "weird" things happen to me but had no idea how sick I was or how sick I would later get. I think age & stress have really played a big part in my progression. ( not to mention two sick children ).

I am also going to try and get to the cardiologist tomorrow, just to make sure everythings functioning ok. My heart is pretty heavy. I will get to see my boys pediatric cardiologist and she's GREAT! She actually sits right in the room with you while you get the echo.

Well, I have to print a paper for my mom so she'll know what meds to give what child, later..

I'd like to hear more about your mother when you get a chance. Did she have any scaring on her brain from her stroke? How well did she recover? I recovered great in regards to the size of scar that is on my brain. I have plenty of residual side effects that are really only noticeable to me unless I point them out to someone OR a physician does a neurological exam.

Krystena s

brain won't shut down to sleep>Date: Mon, 26 Jul 2004 08:43:53 -0400>>Has anyone or their child, ever felt like their brain wouldn't shut down >long enough to go to sleep?>>This happened to me in 2000 when I had a stroke. and it's been happening >to me again for the past 3 days really bad.>I CANNOT sleep. When I do fall asleep, I am awake within 2 hrs at the >MOST.. I can remember everything I was thinking in my sleep. It's not >exactly like dreaming. It's like you are still awake but not conscious and >in your brain/mind I am talking to people or finishing converesations that >you had earlier. ( kinda like a dream because I fill in the people's faces >that I am talking to ). Just very scary.>The best way I can describe it is by saying it't not shutting down. I think >the extra work it's having to do by not sleeping/resting, it's making me >dizzy when I am awake. I am uncoordinated and feel like I am not in the >world mos of the time. Just super dizzy. Such a horrible feeling. I keep >bumping into things. This is very hard with 4 children ( two with mito.) to >take care of. My left arm was jerking last night to. My vision has suddenly >gotten worse. I have to get new contact scripts about 2x per yr. It happens >over night sometimes. I am so scared that I have had another stroke. I have >a massive scar on the right side of my brain already and have residual side >effects from that on the left side of my body.>>Any help would be greatly appreciated,>Krystena sPlease contact mito-owner with any problems or questions.

[Guest guest]

Krystena,

I hope everything goes well with your cardiologist appt. When my mother had

her episode, she was living 7 hours away from me. My father and sister were

there with her, but my dad decided not to pursue anything with the doctors

there because they aren't very good there. Then, my dad's cancer problems

flared up again, quickly overshadowing her health. Plus, with her extreme

denial (something I have to deal with/fight with everyday now), her health

seemed just ok. She does have some slurred speech, short-term memory loss,

and confusion. She is in assissted living because my parents adopted four

of my sisters' children because she (my sister) due to her uncontrolled

bipolar I due to MELAS was and is unable to care for them. All four

children have MELAS at high levels in their blood and all are manifesting at

different levels. They are Angie (8yo), Shelly (7yo), and the twins Becky &

Bobby (5yo). I have 2 children of my own Caitlin (7yo) and (5yo).

& I were tested a year ago for MELAS, and we are at 0%. However, I

have bipolar II and severe migraines, and is very skinny, with poor

muscle development, and a bad appetite. Our geneticist said that the 0%

result can be deveiving because the mito DNA replicate fast sometimes in the

blood, making the result look lower than it really is. My mother was

diagnosed 5 yrs ago @ age 60 with 4% in her blood with only the bipolar I

and low energy levels. I'm sure she's higher now that the disease has

picked up steam.

So, to answer your question, I never saw the the MRI results from her

hospital stay for stroke-like episode, and I don't know how much scarring

she has on her brain. I'm worried with all her heart problems and recent

hospitalization coupled with her grief from Dad's death in March AND her

being transferred to assisted living that she's working towards another

stroke-like episode. At this point though, she's giving me a lot problems

because she doesn't want to stay there. She tells me everyday that she

feels much better and wants to come home. She's also on oxygen 24/7 because

she smoked for 51 years. I've explained to her and so have my siblings that

she has to stay there because she can't take care of herself, much less 4

young children. I have my own daily problems adjusting to my family of 4

growing to a family of 8. They all need to see their various specialists

(luckily close by) before school starts. I know that Angie needs hearing

aids. My mom doesn't seem to grasp the logistics of all of this, which is

very fustrating to me. I'm going to talk to our trust lawyer who also did

Mom's will. I am her medical power of attorney, and I need to see what my

options are. I am 3rd in line for guardianship for the children according

to our family trust. First is my mom, of course, then my sister, who

doesn't want the children (a whole other issue).So, I need to see what my

legal options are -- none of them easy. As you can probably tell, I am

stressed. The funny thing is that the 6 children are the easy part. It's

all that family stuff that's difficult. I love children in general. ; I

volunteer in children's ministries at church, and have picked up a few hints

and tips. I love these children and so does my husband. He, like your

husband, has the paying job, for which I am eternally grateful. Not many

husbands would handle this situation very well at all! He's awesome!

Caroline

>

>Reply-To: Mito

>To: Mito >

>Subject: Re: brain won't shut down to sleep/Caroline

>Date: Tue, 27 Jul 2004 16:03:10 -0400

>

>Caroline,

>

>We have no idea what type of mito we have. I have often wondered if it was

>MELAS. Caden, my oldest affected child ( 6yrs ) had a stroke before he was

>ever born with NO real neurological effects or evidence per MRI. He had

>really obvious facial paralysis on one side. Now, it's only minor.

>I am fairly certain I have been screened for the most common ones such as

>MELAS, MERF, etc.. I know nothing has ever shown up as far as DNA mutations

>etc..

>We thought for a while that we only had MADD/GA2 - A Fatty Oxidation

>Disorder but have learned that it's only secondary to the Primary

>(unidentified mito. condition). We have excellent Metabolic doctors, so I'm

>confident we are in good hands but nothing seems to be simple with

>mitochondrial diseases. I just don't know how to stop this cycle. I have

>only been this bad one other time in my life and it was by the grace of God

>that I pulled through. I only had a local neurologist who had NO clue what

>was going on. He first thought it was atypical MS due to the large area on

>my brain. It was not in multiple spots.. It's all one big connected area.

>That's why he thought it was atypical MS.

>After all, MS is called Multiple Sclerosis because of the multiple

>demylenating areas on the brain. My met. dr says it's not demylenation like

>I was told. It's scaring from a stroke. I am patiently waiting on my

>parents to arrive. They have to drive over an hour to get to my house. It's

>very rare that I have to call them for help but they are always there for

>me when I need them. Thank God! I have NO one else. My husband has to work.

>(someone has to). He's such a tremendous support though. He came home last

>night and put up loads of laundry for me. I feel so guilty sometimes

>because he had no idea what he was marrying into. I knew I had " weird "

>things happen to me but had no idea how sick I was or how sick I would

>later get. I think age & stress have really played a big part in my

>progression. ( not to mention two sick children ).

>I am also going to try and get to the cardiologist tomorrow, just to make

>sure everythings functioning ok. My heart is pretty heavy. I will get to

>see my boys pediatric cardiologist and she's GREAT! She actually sits right

>in the room with you while you get the echo.

>

>Well, I have to print a paper for my mom so she'll know what meds to give

>what child, later..

>

>

>I'd like to hear more about your mother when you get a chance. Did she have

>any scaring on her brain from her stroke? How well did she recover? I

>recovered great in regards to the size of scar that is on my brain. I have

>plenty of residual side effects that are really only noticeable to me

>unless I point them out to someone OR a physician does a neurological exam.

>

>Krystena s

>

>

>

> brain won't shut down to sleep

> >Date: Mon, 26 Jul 2004 08:43:53 -0400

> >

> >Has anyone or their child, ever felt like their brain wouldn't shut

>down

> >long enough to go to sleep?

> >

> >This happened to me in 2000 when I had a stroke. and it's been

>happening

> >to me again for the past 3 days really bad.

> >I CANNOT sleep. When I do fall asleep, I am awake within 2 hrs at the

> >MOST.. I can remember everything I was thinking in my sleep. It's not

> >exactly like dreaming. It's like you are still awake but not conscious

>and

> >in your brain/mind I am talking to people or finishing converesations

>that

> >you had earlier. ( kinda like a dream because I fill in the people's

>faces

> >that I am talking to ). Just very scary.

> >The best way I can describe it is by saying it't not shutting down. I

>think

> >the extra work it's having to do by not sleeping/resting, it's making

>me

> >dizzy when I am awake. I am uncoordinated and feel like I am not in the

> >world mos of the time. Just super dizzy. Such a horrible feeling. I

>keep

> >bumping into things. This is very hard with 4 children ( two with

>mito.) to

> >take care of. My left arm was jerking last night to. My vision has

>suddenly

> >gotten worse. I have to get new contact scripts about 2x per yr. It

>happens

> >over night sometimes. I am so scared that I have had another stroke. I

>have

> >a massive scar on the right side of my brain already and have residual

>side

> >effects from that on the left side of my body.

> >

> >Any help would be greatly appreciated,

> >Krystena s

>

>

>

>

>

> Please contact mito-owner with any problems or

>questions.

>

>

>