What kind of pain killer is ok?

[Guest guest]

Hi,

I always get confused about which pain killer to take. Isn't there one

or two that are not good to take if you have a mitochondrial disorder?

I would like to take something that is anti-inflamatory. I have been

overdoing it with TV and reading and I have had a killer headache for

days. Anyone have this problem of having to limit the TV/reading?

Thanks very much,

Adam

[Guest guest]

Hi Adam,

Tylenol is the pain medication to avoid. Advil, Motrin, etc are ok as long as

you follow the dosage guidelines.

lies can NOT sustain any visual activity or any activity, truth be told,

without raising her lactate levels and getting a headache.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Adam

Aleve is also another anti-inflammatory that you can take.

laurie

> Hi,

>

> I always get confused about which pain killer to take. Isn't there one

> or two that are not good to take if you have a mitochondrial disorder?

> I would like to take something that is anti-inflamatory. I have been

> overdoing it with TV and reading and I have had a killer headache for

> days. Anyone have this problem of having to limit the TV/reading?

>

> Thanks very much,

> Adam

>

>

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>

>

>

>

>

>

[Guest guest]

I didn't realize that mito folks should avoid tylenol. Does anyone

know why? Personally, I took so much ibuprofen in the past that my

gut can't handle it anymore. I'm not sure, but isn't Aleve an

NSAIDs (non-steroidal anti-inflammatory)? If so, that would

probably hurt my gut, too. But as far as I can tell, I haven't had

a bad reaction to tylenol--not that it helps much either.

Interested in learning more....

Shayna

>

> Hi Adam,

>

> Tylenol is the pain medication to avoid. Advil, Motrin, etc are

ok as long as you follow the dosage guidelines.

>

> lies can NOT sustain any visual activity or any activity,

truth be told, without raising her lactate levels and getting a

headache.

>

>

Anyone have this problem of having to limit the TV/reading?>

>

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Adam,

In addition, I would add that taking any pain med for more than 2 or 3

days total in a week will only cause rebound headaches, not get rid of

them.

Also, if you happen to wake up with headaches it could indicate either

possible allergies to your bedding or possible sleep apnea. I'm not a

doc, just have personal experience with both.

Joanne Kocourek wrote:

>Hi Adam,

>

> Tylenol is the pain medication to avoid. Advil, Motrin, etc are ok as long

as you follow the dosage guidelines.

>

> lies can NOT sustain any visual activity or any activity, truth be told,

without raising her lactate levels and getting a headache.

>

>

Anyone have this problem of having to limit the TV/reading?>

>

>

>

>Joanne Kocourek (mom to , lies, and )

>visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

The biobabble is that acetaminophen induces caspases-dependent apoptosis

with mitochondria as primary target. I do take it occasionally but wouldn't

take it regularly at all.

Barbara

> Re: What kind of pain killer is ok?

>

> The way I understand it is that the pathway used for Tylenol is though

> the mitochondria, so it causes damage to even people without mito

> disease and it make our % of bad mito even greater with a greater

> likelihood of increased problems and disease progression. The same

> thing is true for tobacco and alcohol. Bad for everyone, but even worse

> for us.

>

>

>

> shaynapearl wrote:

>

> >I didn't realize that mito folks should avoid tylenol. Does anyone

> >know why? Personally, I took so much ibuprofen in the past that my

> >gut can't handle it anymore. I'm not sure, but isn't Aleve an

> >NSAIDs (non-steroidal anti-inflammatory)? If so, that would

> >probably hurt my gut, too. But as far as I can tell, I haven't had

> >a bad reaction to tylenol--not that it helps much either.

> >Interested in learning more....

> >Shayna

[Guest guest]

Shayna

Aleve is a different class of NSAID than Motin, etc. It is Naproxa

sodium. I take prox (prescription dose) and have taken it in the

past when I was having stomach problems with other things. The liquid

is suppose to be easier on the stomach than tablets.

laurie

> I didn't realize that mito folks should avoid tylenol. Does anyone

> know why? Personally, I took so much ibuprofen in the past that my

> gut can't handle it anymore. I'm not sure, but isn't Aleve an

> NSAIDs (non-steroidal anti-inflammatory)? If so, that would

> probably hurt my gut, too. But as far as I can tell, I haven't had

> a bad reaction to tylenol--not that it helps much either.

> Interested in learning more....

> Shayna

>

>

>

>

> >

> > Hi Adam,

> >

> > Tylenol is the pain medication to avoid. Advil, Motrin, etc are

> ok as long as you follow the dosage guidelines.

> >

> > lies can NOT sustain any visual activity or any activity,

> truth be told, without raising her lactate levels and getting a

> headache.

> >

> >

mitochondrial disorder?

> > Anyone have this problem of having to limit the TV/reading?>

> >

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Hi, Barbara

I always find your posts so informative. I like " biobabble " ) I

was glad to learn about acetaminophen, although the knowledge came a

little late for me. My rhumatologist had me on a maximum dose of it

for months and months when I was incorrectly diagnosed with RA a long

time ago.

On a more serious topic, I am sorry you are having problems with your

stoma. Can anything ever be easy for us?? I wish I had something to

add to the topic, but have no experience in that area. I am confident

that you will find a solution though - if anyone can, it is you. Best

of luck with it.

Regards

Sunny

> The biobabble is that acetaminophen induces caspases-dependent

> apoptosis

> with mitochondria as primary target. I do take it occasionally but

> wouldn't

> take it regularly at all.

>

>

[Guest guest]

The way I understand it is that the pathway used for Tylenol is though

the mitochondria, so it causes damage to even people without mito

disease and it make our % of bad mito even greater with a greater

likelihood of increased problems and disease progression. The same

thing is true for tobacco and alcohol. Bad for everyone, but even worse

for us.

shaynapearl wrote:

>I didn't realize that mito folks should avoid tylenol. Does anyone

>know why? Personally, I took so much ibuprofen in the past that my

>gut can't handle it anymore. I'm not sure, but isn't Aleve an

>NSAIDs (non-steroidal anti-inflammatory)? If so, that would

>probably hurt my gut, too. But as far as I can tell, I haven't had

>a bad reaction to tylenol--not that it helps much either.

>Interested in learning more....

>Shayna

>

>

>

>

>

>

>>Hi Adam,

>>

>> Tylenol is the pain medication to avoid. Advil, Motrin, etc are

>>

>>

>ok as long as you follow the dosage guidelines.

>

>

>>

>> lies can NOT sustain any visual activity or any activity,

>>

>>

>truth be told, without raising her lactate levels and getting a

>headache.

>

>

>>

>

>>

>mitochondrial disorder?

>

>

>>Anyone have this problem of having to limit the TV/reading?>

>>

>>

>>

>>Joanne Kocourek (mom to , lies, and )

>>visit us at: http://www.caringbridge.org/il/annakris

>>

>>

[Guest guest]

Bless your heart, thank you, Sunny.

B

> Re: What kind of pain killer is ok?

>

> Hi, Barbara

>

> I always find your posts so informative. I like " biobabble " ) I

> was glad to learn about acetaminophen, although the knowledge came a

> little late for me. My rhumatologist had me on a maximum dose of it

> for months and months when I was incorrectly diagnosed with RA a long

> time ago.

>

> On a more serious topic, I am sorry you are having problems with your

> stoma. Can anything ever be easy for us?? I wish I had something to

> add to the topic, but have no experience in that area. I am confident

> that you will find a solution though - if anyone can, it is you. Best

> of luck with it.

>

> Regards

>

> Sunny

[Guest guest]

We were told for my son and I (MELAS) to avoid aspirin but tylenol or motrin (or

generics) were the ones to take. Motrin is supposed to work better on fevers

and tylenol better on pain. This was the doc in Milwaukee who diagnosed us.

Janet Sample

Re: What kind of pain killer is ok?

Adam,

In addition, I would add that taking any pain med for more than 2 or 3

days total in a week will only cause rebound headaches, not get rid of

them.

Also, if you happen to wake up with headaches it could indicate either

possible allergies to your bedding or possible sleep apnea. I'm not a

doc, just have personal experience with both.

Joanne Kocourek wrote:

>Hi Adam,

>

> Tylenol is the pain medication to avoid. Advil, Motrin, etc are ok as long

as you follow the dosage guidelines.

>

> lies can NOT sustain any visual activity or any activity, truth be

told, without raising her lactate levels and getting a headache.

>

>

Anyone have this problem of having to limit the TV/reading?>

>

>

>

>Joanne Kocourek (mom to , lies, and )

>visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Hi Adam

I have a lot of trouble sleeping during the night, and there's little else

to do with myself besides TV or reading. Like you, I've sometimes worsened

my headache by way too much of both of these. I've suspected that this is

mainly due to how I sit, namely in an easy chair with my feet up, and my

head therefore bent forward a bit. I bend my head forward even more when

reading. Finally converting to regular reading glasses (1.50, I'm age 56)

has helped, but I still bend a lot. I also think part of it is the TOTAL

lack of exercise, i.e. not even moving around much. Also, when I use a neck

pillow and give up TV or reading for a spell, I usually feel better, for a

while anyway.

I am frequently stuffed up in my nasal passages, not a lot but more than a

little. I've noticed that some of my worst headaches correlates with the

most stuffiness. I've also noticed that some exercise helps with this. I

walk somewhat (on a level beach) slowly, for half to one mile, with one

sitdown in the middle. This amount of exercise is VERY tiring, and I'm

generally sore in my muscles all over, and hence it's hard for me to get

started doing it. It also can make me dizzy and faint, if I start out too

quickly. However, it does get my heart and breath going faster, not a lot

though because that would trigger a mini-crash. With rest stops, and

carefully calibrated amount of exertion, I've found I can trigger myself

into a kind of second wind. I get warm then, and my breath is deeper, and if

I've been doing this daily for many days, I find that I can go then a LONG

ways further, with more stamina AND an overall feeling of being safe with it

(i.e. less prone to dizziness). And I've noticed two important things after

these walks (even the shorter ones), that lasts for the rest of the day,

namely (1) the stuffiness is much less, and (2) the headache is much

relieved.

Intriguingly, I've also found that I can get most of the above value by

taking an OTC decongestant, anything containing pseudoephedrine. I don't

like to overdo this, but sometimes I do it when desperate. Of course, I'm

not surprised that this helps with the stuffiness, but it's fascinating to

me that it not only helps a lot with headache, but I also get this

much-better feeling of stamina and safety. This would seem to fit with the

sleep apnea theory, but I'm not convinced, in my case. I do have my first

sleep study scheduled for late January, and I'm both a bit afraid of this

and looking forward to maybe learning more.

I don't know if any of above is relevant to your situation, but I hope it

helps. Good luck!

Steve D.

> Date: Wed, 30 Nov 2005 13:33:50 -0500

>

> Subject: What kind of pain killer is ok?

>

> Hi,

>

> I always get confused about which pain killer to take. Isn't there one

> or two that are not good to take if you have a mitochondrial disorder?

> I would like to take something that is anti-inflamatory. I have been

> overdoing it with TV and reading and I have had a killer headache for

> days. Anyone have this problem of having to limit the TV/reading?

>

> Thanks very much,

> Adam

[Guest guest]

My understanding is that another reason for avoiding tylenol is that it

accumulates in liver and kidney, and therefore one shouldn't take it for a

long time continuously. As a lifetime OTC pain-relief user (abuser, really,

but that's another story, and my excuse is that I've had horrible headaches

all my life), I read that on the bottle and ignored it, along with all the

other warnings.

The problem with these warnings is that a FEW are really important, but

they're mixed in with a long list of obvious or minor stuff. Like a

microwave oven that, according to the several pages of risk warnings in the

manual, could slip off the counter and land on your feet, and also poses a

risk of electrocution and therefore shouldn't be used outdoors in the rain.

Duh. You get so you skip over all this stuff to get to the tiny section

about how to operate it.

So after a few months of trying to get headache help with tylenol, I

discovered that I was getting ferocious pain in my lower back, much like I

had had many times earlier. Only this time the pain was different, and

worse. And then I finally figured out that this was probably kidney pain.

Sure enough, the pain went away after I stopped the tylenol.

Steve D.

> Date: Thu, 01 Dec 2005 00:55:47 -0000

>

> Subject: Re: What kind of pain killer is ok?

>

> I didn't realize that mito folks should avoid tylenol. Does anyone

> know why? Personally, I took so much ibuprofen in the past that my

> gut can't handle it anymore. I'm not sure, but isn't Aleve an

> NSAIDs (non-steroidal anti-inflammatory)? If so, that would

> probably hurt my gut, too. But as far as I can tell, I haven't had

> a bad reaction to tylenol--not that it helps much either.

> Interested in learning more....

> Shayna

>

>

>

>

>>

>> Hi Adam,

>>

>> Tylenol is the pain medication to avoid. Advil, Motrin, etc are

> ok as long as you follow the dosage guidelines.

>>

>> lies can NOT sustain any visual activity or any activity,

> truth be told, without raising her lactate levels and getting a

> headache.

>>

>>

mitochondrial disorder?

>> Anyone have this problem of having to limit the TV/reading?>

>>

>>

>>

>> Joanne Kocourek (mom to , lies, and )

>> visit us at: http://www.caringbridge.org/il/annakris