Re: Carnitine side effects-?'s

[Guest guest]

Darla,

I am not sure if Carnitine had anything to do with Aspyn's death, but the day before she crashed they started her on the carnatine, the next day she started acting funny, Aspyn was not one that was ever a fussy baby even when she was feeling her worst. We told the doctors many times that day that Aspyn was not acting like herself. After further testing they determined Aspyn was actually improving and they figured that her not acting like herself was just her body getting back to "normal" later that day is when she crashed and they did a chest x-ray only to find that within a couple days her heart had tripled in size. They never actually said why they thought this happened, but my gut feeling really was that she had a bad reaction to the carnatine. Only a feeling, but when I hear stuff like what you are going through it makes me wonder.

Sorry I don't really have anything else to offer, but I thought I would just share my story.

How is the baby doing? It sounds like she is gaining weight well, I am glad to hear that all seems to good.

Wayne and BlockMommy and Daddy of Aspyn RemarNovember 14, 2001 to July 15, 2002Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyPlease visit Aspyn at www.aspynblock.com or www.rememberinghannah.co.uk/aspyn.htm

Carnitine side effects-?'s

Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options?

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I am not sure if Carnitine had anything to do with Aspyn's death, but the day before she crashed they started her on the carnatine, the next day she started acting funny, Aspyn was not one that was ever a fussy baby even when she was feeling her worst. We told the doctors many times that day that Aspyn was not acting like herself. After further testing they determined Aspyn was actually improving and they figured that her not acting like herself was just her body getting back to "normal" later that day is when she crashed and they did a chest x-ray only to find that within a couple days her heart had tripled in size. They never actually said why they thought this happened, but my gut feeling really was that she had a bad reaction to the carnatine. Only a feeling, but when I hear stuff like what you are going through it makes me wonder.

Sorry I don't really have anything else to offer, but I thought I would just share my story.

How is the baby doing? It sounds like she is gaining weight well, I am glad to hear that all seems to good.

Wayne and BlockMommy and Daddy of Aspyn RemarNovember 14, 2001 to July 15, 2002Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyPlease visit Aspyn at www.aspynblock.com or www.rememberinghannah.co.uk/aspyn.htm

Carnitine side effects-?'s

Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options?

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I am not sure if Carnitine had anything to do with Aspyn's death, but the day before she crashed they started her on the carnatine, the next day she started acting funny, Aspyn was not one that was ever a fussy baby even when she was feeling her worst. We told the doctors many times that day that Aspyn was not acting like herself. After further testing they determined Aspyn was actually improving and they figured that her not acting like herself was just her body getting back to "normal" later that day is when she crashed and they did a chest x-ray only to find that within a couple days her heart had tripled in size. They never actually said why they thought this happened, but my gut feeling really was that she had a bad reaction to the carnatine. Only a feeling, but when I hear stuff like what you are going through it makes me wonder.

Sorry I don't really have anything else to offer, but I thought I would just share my story.

How is the baby doing? It sounds like she is gaining weight well, I am glad to hear that all seems to good.

Wayne and BlockMommy and Daddy of Aspyn RemarNovember 14, 2001 to July 15, 2002Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyPlease visit Aspyn at www.aspynblock.com or www.rememberinghannah.co.uk/aspyn.htm

Carnitine side effects-?'s

Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options?

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

The baby, Zipporrah, is doing pretty good. She has had a few issues with swallowing air and gassiness more than my other babys have had but otherwise she has been fine. We are enjoying getting to know her and it is always amazing looking into their eyes and watching them as they explore their new world. I am always amazed at the miracle of life. I hope you are doing well also. It is always sad to remember the suffering your family went through with the death of Aspyn. She was one of the first I remember hearing about when I first joined this group and I have thought about you quite often. Darla: mommy to Asenath Carnitine side effects-?'s Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options? Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

The baby, Zipporrah, is doing pretty good. She has had a few issues with swallowing air and gassiness more than my other babys have had but otherwise she has been fine. We are enjoying getting to know her and it is always amazing looking into their eyes and watching them as they explore their new world. I am always amazed at the miracle of life. I hope you are doing well also. It is always sad to remember the suffering your family went through with the death of Aspyn. She was one of the first I remember hearing about when I first joined this group and I have thought about you quite often. Darla: mommy to Asenath Carnitine side effects-?'s Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options? Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

The baby, Zipporrah, is doing pretty good. She has had a few issues with swallowing air and gassiness more than my other babys have had but otherwise she has been fine. We are enjoying getting to know her and it is always amazing looking into their eyes and watching them as they explore their new world. I am always amazed at the miracle of life. I hope you are doing well also. It is always sad to remember the suffering your family went through with the death of Aspyn. She was one of the first I remember hearing about when I first joined this group and I have thought about you quite often. Darla: mommy to Asenath Carnitine side effects-?'s Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options? Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla,

My first question is are you breast feeding? That always really depleted

me. You obviously have been through a lot physically and we all know how

fatique can affect someone with mito- soft or full blown. I don't

remember much in my life that was more fatiquing then nuturing a new

born. 2nd only to the worry, maintaining and constant attention that a

Mito toddler requires. PLUS all the other children. You must be majorly

run down!

I would be concerned that Asenath might be having similar symptoms. Is

there anything the medicos can do to rest your concerns??? I don't

know..... don't know.... those words we all have heard so many

times........

Sorry I wasn't more help. Thinking of you and yours.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Darla,

My first question is are you breast feeding? That always really depleted

me. You obviously have been through a lot physically and we all know how

fatique can affect someone with mito- soft or full blown. I don't

remember much in my life that was more fatiquing then nuturing a new

born. 2nd only to the worry, maintaining and constant attention that a

Mito toddler requires. PLUS all the other children. You must be majorly

run down!

I would be concerned that Asenath might be having similar symptoms. Is

there anything the medicos can do to rest your concerns??? I don't

know..... don't know.... those words we all have heard so many

times........

Sorry I wasn't more help. Thinking of you and yours.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Darla,

My first question is are you breast feeding? That always really depleted

me. You obviously have been through a lot physically and we all know how

fatique can affect someone with mito- soft or full blown. I don't

remember much in my life that was more fatiquing then nuturing a new

born. 2nd only to the worry, maintaining and constant attention that a

Mito toddler requires. PLUS all the other children. You must be majorly

run down!

I would be concerned that Asenath might be having similar symptoms. Is

there anything the medicos can do to rest your concerns??? I don't

know..... don't know.... those words we all have heard so many

times........

Sorry I wasn't more help. Thinking of you and yours.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Darla, I had to diminish the dose of carnitine, because I cannot sleep. My optimum dose is 100 mg/day, but for my mother is 200 mg. But if I don't take it I feel me wrong. You have to set up the optimum.

la

Carnitine side effects-?'s

Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options?

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla, I had to diminish the dose of carnitine, because I cannot sleep. My optimum dose is 100 mg/day, but for my mother is 200 mg. But if I don't take it I feel me wrong. You have to set up the optimum.

la

Carnitine side effects-?'s

Dr. Whiteman put me on Carnitine about 8 weeks ago and shortly after beginning to take them I began having heart palpitations and heart arrhythmias. When I spoke to Dr. Whiteman about 3 weeks ago about it he recommended I stop using the carnitor for now to see if that was the problem. He said that some people react that way with their use. Well, within a couple days after stopping them I noticed that I no longer had the heart issues anymore. Number one question- Has anyone else had these type of problems with Carnitor? Number two question-With Asenath being so young, how do I know SHE isn't having the same problems? Then, ever since I stopped the meds I have gotten weaker and begun to experience several symptoms. (Not sure if it is the fact that I stopped the med, the fact that I just had a baby, or both that is causing all this.) I have been having more muscle pain, muscle jerks and times where my legs will give out and can feel my arms lose their strength suddenly too, and I have just started having problems with black-outs again. The black outs are an issue with blood pressure drops when standing after bending over or after sitting or lying I think, and I have experienced all these symptoms many times before when I am run down. Question three-If I need the Carnitor to not have a crisis, which is what I feel I am headed for, then how can I if it causes the heart issues? Is there other options?

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.