how do you get by without stimulants?

[Guest guest]

When they first thought I had MS I was started on stimulants, i.e.,

ritalin, adderall, provigil, for the fatigue. I have had to switch

them back and forth because the effect starts to wear off over time.

Just about everyone I talked to with MS was on one of them. Now that

I am being tested and treated for Mito, I haven't been able to find a

single person with mito who is taking them.

My doctor has left me on them pretty much because I can't get out of

bed without them in the morning. I have tried numerous times but in

five years I haven't been able to go a single day without them. If I

try, I can't keep my eyes open, focused or stay awake for more than a

few minutes.

If I really do have mito, then how is it that everybody else with it

doesn't need the stimulants like I do? How do you get through the

day? The morning for that matter?

One of my friends thinks that maybe I have developed an addiction to

the stimulants and that the overwhelming fatigue I feel when I try to

go without them is withdrawal and not necessarily the fatigue I would

feel just due to the mito. If that's a possibility it would help me

to know just how much fatigue others have. If you work, have you

ever fallen asleep at your desk? Have you had to pull over just

driving home because you might fall asleep? Do you feel sometimes

that you are barely conscious? Sometimes, I don't have the energy to

make a phone call or have a simple conversation with someone about

the weather. Do you have that much fatigue?

Thanks for your input.

[Guest guest]

I have lots of fatigue and sometimes sleepiness. When I will still

working and sometimes now, I just don't have the energy to do

anything. If I push myself, I just get worse.

Have you tried discontinuing the stimulants very slowly? My

daughter-in-law was on a stimulant for a sleep problem (not mito or

MS) and had to go off it very slowly. She was also told to stay away

from caffeine during the process and after.

laurie

> When they first thought I had MS I was started on stimulants, i.e.,

> ritalin, adderall, provigil, for the fatigue. I have had to switch

> them back and forth because the effect starts to wear off over time.

> Just about everyone I talked to with MS was on one of them. Now that

> I am being tested and treated for Mito, I haven't been able to find a

> single person with mito who is taking them.

>

> My doctor has left me on them pretty much because I can't get out of

> bed without them in the morning. I have tried numerous times but in

> five years I haven't been able to go a single day without them. If I

> try, I can't keep my eyes open, focused or stay awake for more than a

> few minutes.

>

> If I really do have mito, then how is it that everybody else with it

> doesn't need the stimulants like I do? How do you get through the

> day? The morning for that matter?

>

> One of my friends thinks that maybe I have developed an addiction to

> the stimulants and that the overwhelming fatigue I feel when I try to

> go without them is withdrawal and not necessarily the fatigue I would

> feel just due to the mito. If that's a possibility it would help me

> to know just how much fatigue others have. If you work, have you

> ever fallen asleep at your desk? Have you had to pull over just

> driving home because you might fall asleep? Do you feel sometimes

> that you are barely conscious? Sometimes, I don't have the energy to

> make a phone call or have a simple conversation with someone about

> the weather. Do you have that much fatigue?

>

> Thanks for your input.

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

--- semandyred semandyred@...> wrote:

> When they first thought I had MS I was started on

> stimulants, i.e.,

> ritalin, adderall, provigil, for the fatigue.

I have CNS hypersomnolence. Have you been tested for

that? You do it with an overnight sleep study and then

have four to five planned naps the next day. I slept

during all naps. Anyway, I took Provigil once but it

didn't really help. I didn't sleep at all that night.

I feel terrible. If I don't move I fall asleep. I

sleep if I ride in a car. If driving a distance I eat,

keep the radio on and have to stop frequently for naps

or to walk around. I drink a lot of Diet Pepsi. My

typical amount is about six cans a day.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

hi semandyred - answers - yes, yes and yes! I need a really good night's sleep

and sometimes a nap to get through the day and have to watch some of the foods I

eat, which drain me of energy. Am trying CoQ10 in the hope it will give me

extra energy. pamela

how do you get by without stimulants?

When they first thought I had MS I was started on stimulants, i.e.,

ritalin, adderall, provigil, for the fatigue. I have had to switch

them back and forth because the effect starts to wear off over time.

Just about everyone I talked to with MS was on one of them. Now that

I am being tested and treated for Mito, I haven't been able to find a

single person with mito who is taking them.

My doctor has left me on them pretty much because I can't get out of

bed without them in the morning. I have tried numerous times but in

five years I haven't been able to go a single day without them. If I

try, I can't keep my eyes open, focused or stay awake for more than a

few minutes.

If I really do have mito, then how is it that everybody else with it

doesn't need the stimulants like I do? How do you get through the

day? The morning for that matter?

One of my friends thinks that maybe I have developed an addiction to

the stimulants and that the overwhelming fatigue I feel when I try to

go without them is withdrawal and not necessarily the fatigue I would

feel just due to the mito. If that's a possibility it would help me

to know just how much fatigue others have. If you work, have you

ever fallen asleep at your desk? Have you had to pull over just

driving home because you might fall asleep? Do you feel sometimes

that you are barely conscious? Sometimes, I don't have the energy to

make a phone call or have a simple conversation with someone about

the weather. Do you have that much fatigue?

Thanks for your input.

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

I also tried Provigil , didnt help at all...made me worse actually..

[Guest guest]

--- MitomomX3@... wrote:

> I also tried Provigil , didnt help at all...made me

> worse actually..

And I feel TERRIBLE!!!! But what do you do? I'm really

scared that I'll soon be unable to work. As I'm the

primary breadwinner what will we do?

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

--- MitomomX3@... wrote:

> I also tried Provigil , didnt help at all...made me

> worse actually..

And I feel TERRIBLE!!!! But what do you do? I'm really

scared that I'll soon be unable to work. As I'm the

primary breadwinner what will we do?

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Ah, see---my question exactly. If I were not working full time, I could

probably get by on at least less stimulants if not none at all. But in order to

stay awake at my desk for longer than 10 minutes, read one sheet of notes, or do

anything at all related to my job, I have to take maximum amounts of three

different kinds of stimulants. I have to wonder if this is right? I am a

single mother so I have to provide income and I don't know if I would meet the

criteria for being disabled, but I don't want to have a heartattack because I

have to take this much medication just to sit up straight in my desk and keep my

eyes open. Just not sure what to do from here.

Van Verst tbnkatie@...> wrote:

--- MitomomX3@... wrote:

> I also tried Provigil , didnt help at all...made me

> worse actually..

And I feel TERRIBLE!!!! But what do you do? I'm really

scared that I'll soon be unable to work. As I'm the

primary breadwinner what will we do?

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Heidi

Have you had a sleep study done recently?

laurie

> Ah, see---my question exactly. If I were not working full time, I could

> probably get by on at least less stimulants if not none at all. But in

> order to stay awake at my desk for longer than 10 minutes, read one sheet of

> notes, or do anything at all related to my job, I have to take maximum

> amounts of three different kinds of stimulants. I have to wonder if this is

> right? I am a single mother so I have to provide income and I don't know if

> I would meet the criteria for being disabled, but I don't want to have a

> heartattack because I have to take this much medication just to sit up

> straight in my desk and keep my eyes open. Just not sure what to do from

> here.

>

>

>

> Van Verst tbnkatie@...> wrote:

>

>

> --- MitomomX3@... wrote:

>

> > I also tried Provigil , didnt help at all...made me

> > worse actually..

>

> And I feel TERRIBLE!!!! But what do you do? I'm really

> scared that I'll soon be unable to work. As I'm the

> primary breadwinner what will we do?

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

[Guest guest]

I have not had a sleep study done. I was going to at one time but the sleep lab

required that I be off the stimulants for two weeks before the study. Well,

like I said in my post, I can't go off the stimulants for two days let alone two

weeks so I couldn't have it done. My doctor said that I was at low risk for a

sleep disorder anyway so I didn't pursue it. If I could have one done without

having to go that time, I would do so.

Laurie Fitzgerald laurie.fitzgerald@...> wrote: Heidi

Have you had a sleep study done recently?

laurie

> Ah, see---my question exactly. If I were not working full time, I could

> probably get by on at least less stimulants if not none at all. But in

> order to stay awake at my desk for longer than 10 minutes, read one sheet of

> notes, or do anything at all related to my job, I have to take maximum

> amounts of three different kinds of stimulants. I have to wonder if this is

> right? I am a single mother so I have to provide income and I don't know if

> I would meet the criteria for being disabled, but I don't want to have a

> heartattack because I have to take this much medication just to sit up

> straight in my desk and keep my eyes open. Just not sure what to do from

> here.

>

>

>

> Van Verst tbnkatie@...> wrote:

>

>

> --- MitomomX3@... wrote:

>

> > I also tried Provigil , didnt help at all...made me

> > worse actually..

>

> And I feel TERRIBLE!!!! But what do you do? I'm really

> scared that I'll soon be unable to work. As I'm the

> primary breadwinner what will we do?

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

[Guest guest]

Stimulants essentially are " filling in " for your reduced

neurotransmitter activity. I would hope that if you are able to work

more on the components of the mito cocktail, which mostly are

vitamins and supplements, you could wean yourself off of stimulants.

Stimulants can cause heart issues, already a risk in us mitoers. My

decrease in fatigue, especially at night, I believe is due to my

response to NADH supplementation. It is sold as an " energy pill "

for " regular people " , but is a raw material for Complex I (along with

CoQ10) and is on Dr. Shoffner's mito cocktail list.

I buy it from the manufacturer:

http://www.enadh.com/

I don't necessarily believe that it has benefits for everybody, not

even all mitoers, but it sure helps me be able to take care of my

kids after working all day. Note that I didn't respond to CoQ10, and

got insomnia from it, so it's possible I have an NADH deficit instead

of a CoQ10 deficit.

YMMV, I'm not a medical doctor, etc.

Take care,

RH

> >

> > > I also tried Provigil , didnt help at all...made me

> > > worse actually..

> >

> > And I feel TERRIBLE!!!! But what do you do? I'm really

> > scared that I'll soon be unable to work. As I'm the

> > primary breadwinner what will we do?

> >

> >

> >

> > Mom to the two best kids in the world!

> > http://www.caringbridge.org/visit/thomasandkatie

> >

> > __________________________________________________

> >

[Guest guest]

Heidi

Earlier, you asked " If I really do have mito, then how is it that everybody else

with it doesn't need the stimulants like I do? How do you get through the day?

The morning for that matter? "

My answer to those last two: I don't. I greatly limit what I can do in a day,

and I have a lot of help.

My take on stimulants is, I suppose I could take them and do more, at least for

a while, until I completely wiped myself out (literally?). For me, it's not so

much how to maintain ordinary daytime activities like a full-time job, it's that

I've recognized that I simply can't. This is hard to accept, and I so wish I

could do more, but I just can't and so somehow my life gets rearranged (and

limited) around this fact. It never occurred to me to try stimulants.

All this accepting of mine is " easy for me to say " , since I have a vastly

supportive and understanding wife, and we're past raising kids. College loans

are piling up, but maybe one of our kids will make a living someday. :-) We have

some limited resources, like my disability pension. We're struggling financially

but nothing like what single moms face if they can't work, and there is no

family help. I'm very sorry for your situation, and I hope you can somehow find

a way through this difficulty. I would imagine that the incredible degree of

sleepiness you have must be qualifying for disability on its own. " I would

imagine " but unfortunately it's usually not that simple. But it should be.

No, Heidi, it isn't " right " . I fear for the burnout cycle you're living, with so

much stimulants. I hope you can reduce them gradually, and get treatment for

your underlying condition.

Steve D.

Re: how do you get by without stimulants?

Ah, see---my question exactly. If I were not working full time, I could

probably get by on at least less stimulants if not none at all. But in order to

stay awake at my desk for longer than 10 minutes, read one sheet of notes, or do

anything at all related to my job, I have to take maximum amounts of three

different kinds of stimulants. I have to wonder if this is right? I am a

single mother so I have to provide income and I don't know if I would meet the

criteria for being disabled, but I don't want to have a heartattack because I

have to take this much medication just to sit up straight in my desk and keep my

eyes open. Just not sure what to do from here.

Van Verst tbnkatie@...> wrote:

--- MitomomX3@... wrote:

> I also tried Provigil , didnt help at all...made me

> worse actually..

And I feel TERRIBLE!!!! But what do you do? I'm really

scared that I'll soon be unable to work. As I'm the

primary breadwinner what will we do?

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

[Guest guest]

Just wanted to alert the group that when I clicked on the enadh link below,

the site immediately attempted to load a Trojan horse on my machine, though

my software blocked it. I was surprised that a reputable company would have

malware on their site.

Barbara

> Re: how do you get by without stimulants?

>

> Stimulants essentially are " filling in " for your reduced

> neurotransmitter activity. I would hope that if you are able to work

> more on the components of the mito cocktail, which mostly are

> vitamins and supplements, you could wean yourself off of stimulants.

>

> Stimulants can cause heart issues, already a risk in us mitoers. My

> decrease in fatigue, especially at night, I believe is due to my

> response to NADH supplementation. It is sold as an " energy pill "

> for " regular people " , but is a raw material for Complex I (along with

> CoQ10) and is on Dr. Shoffner's mito cocktail list.

>

> I buy it from the manufacturer:

> http://www.enadh.com/

>

> I don't necessarily believe that it has benefits for everybody, not

> even all mitoers, but it sure helps me be able to take care of my

> kids after working all day. Note that I didn't respond to CoQ10, and

> got insomnia from it, so it's possible I have an NADH deficit instead

> of a CoQ10 deficit.

>

> YMMV, I'm not a medical doctor, etc.

>

> Take care,

> RH

>

>

>

>

>

>

>

> > >

> > > > I also tried Provigil , didnt help at all...made me

> > > > worse actually..

> > >

> > > And I feel TERRIBLE!!!! But what do you do? I'm really

> > > scared that I'll soon be unable to work. As I'm the

> > > primary breadwinner what will we do?

> > >

> > >

> > >

> > > Mom to the two best kids in the world!

> > > http://www.caringbridge.org/visit/thomasandkatie

> > >

> > > __________________________________________________

> > >

[Guest guest]

Thank you Barbara for the heads up.

How are you doing?

Barbara Seaman wrote:

>Just wanted to alert the group that when I clicked on the enadh link below,

>the site immediately attempted to load a Trojan horse on my machine, though

>my software blocked it. I was surprised that a reputable company would have

>malware on their site.

>

>Barbara

>

>

>

>> Re: how do you get by without stimulants?

>>

>>Stimulants essentially are " filling in " for your reduced

>>neurotransmitter activity. I would hope that if you are able to work

>>more on the components of the mito cocktail, which mostly are

>>vitamins and supplements, you could wean yourself off of stimulants.

>>

>>Stimulants can cause heart issues, already a risk in us mitoers. My

>>decrease in fatigue, especially at night, I believe is due to my

>>response to NADH supplementation. It is sold as an " energy pill "

>>for " regular people " , but is a raw material for Complex I (along with

>>CoQ10) and is on Dr. Shoffner's mito cocktail list.

>>

>>I buy it from the manufacturer:

>>http://www.enadh.com/

>>

>>I don't necessarily believe that it has benefits for everybody, not

>>even all mitoers, but it sure helps me be able to take care of my

>>kids after working all day. Note that I didn't respond to CoQ10, and

>>got insomnia from it, so it's possible I have an NADH deficit instead

>>of a CoQ10 deficit.

>>

>>YMMV, I'm not a medical doctor, etc.

>>

>>Take care,

>>RH

>>

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

Not good right now. Pretty wretched, actually. Long story.........my j-tube

feedings have gotten all messed up because gut hasn't healed from the Feb 2

tube pulling. I am now on TPN via PICC line until we can get the j-tube back

up to speed, though the TPN formula in turn messed up my hyperinsulinism big

time. We have tried to adjust the formula several times, but muscle is still

shot to pot, feels pulverized and everything burns like crazy. Worst case on

the tube problem might involve more surgery, but I am trying like everything

to avoid that. My PCP is lost and does whatever I suggest, which is scary.

Oh for a mito expert!!

Barbara

>

> How are you doing?

>

>

>

[Guest guest]

Hi Barbara,

I'm sorry to hear you're having a rough time right now. Have you thought

about running your TPN over a longer period of time to keep your blood sugars

more stabilized? Heidi C. has an issue with diabetes and blood sugar issues

and she runs her TPN over 24 hrs and can't be disconnected. I run mine over

approx. 21 hrs/day right now b/c the longer I am off, the more trouble I have

with blood sugars dropping low and confusion issues. They have tested my

acylcarnitines off TPN and the longer I am off, the worse they get b/c of

fasting.

The pharmacist at my homecare co. has quite a few of us on long term TPN who

have mito (probably 5-10 mito patients now out of the 120+ long term TPN

consumers that they have) and he's getting fairly knowledgeable in the combined

management of mito and TPN. If you want his contact info, please e-mail me

offlist and I'd be happy to give it to you.

Hope you start feeling better.

Malisa

In a message dated 3/18/2006 8:17:45 P.M. Eastern Standard Time,

wheatchild@... writes:

Kristie! Hardly out of the hospital yourself! Bless you for responding. I

hate PICC's too and swore I'd never have one at home. Never say never, I

guess. The vein has gotten irritated, of course, so I've been applying warm

moist compresses 4x/day as instructed and it has helped. I was worried we'd

have to move it already. I do have a very good IV nurse who knows his stuff,

so that is comforting. I can call him anytime 24/7. No, definitely not

adding insulin as I make way too much all by myself, no deficiency there,

ha. I keep getting all the symptoms of excess insulin [profound weakness,

nausea, flushing] with the TPN, and then dreadful hypoglycemic stuff coming

off the TPN. We are tapering 1.5 hours now coming off and fiddling with

percentages of carbs, protein, fats, as well as lowering total TPN calories

to help smooth out the peaks and valleys. Lipids have always been under 20%

per my request due to my broad beta ox defect. Yesterday the pharmacist

decided to lower the dextrose further and substitute water as my BUN was

going up, maybe because of all the protein, but I don't know. Neither do

they. I'm hoping to be off TPN soon, but it all depends on what happens with

the taper off. Wed I worked up a protocol for simultaneously gearing up

J-tube and downsizing TPN, gave it to my PCP and he said fine, do it. I had

to explain that I didn't know IF it would work, only that I was going to

try. He was a bit crestfallen. We have found that taking Pepsid helps with

the raw gut pain. Who would have known something that simple would help? We

are also trying Peptamen, a predigested formula, as I haven't been able to

tolerate my old formula since the tube was pulled. It just runs through. I

was having trouble getting in medications and food, either by mouth or

J-tube. Calorie count got very low, triggered crisis 10 days ago. Tonight

I'm actually feeling half human, but mornings have been wretched. We are

lost in some metabolic maze. Not been this messed up since I've had the

tube, almost 3 years. Will check out the TPN list when I can. Thanks!! Hope

you are home to stay for a while. I saw your " bed head " pix and had to

laugh. Looks SO familiar.........

(((Hugs)))

B

[Guest guest]

Kristie! Hardly out of the hospital yourself! Bless you for responding. I

hate PICC's too and swore I'd never have one at home. Never say never, I

guess. The vein has gotten irritated, of course, so I've been applying warm

moist compresses 4x/day as instructed and it has helped. I was worried we'd

have to move it already. I do have a very good IV nurse who knows his stuff,

so that is comforting. I can call him anytime 24/7. No, definitely not

adding insulin as I make way too much all by myself, no deficiency there,

ha. I keep getting all the symptoms of excess insulin [profound weakness,

nausea, flushing] with the TPN, and then dreadful hypoglycemic stuff coming

off the TPN. We are tapering 1.5 hours now coming off and fiddling with

percentages of carbs, protein, fats, as well as lowering total TPN calories

to help smooth out the peaks and valleys. Lipids have always been under 20%

per my request due to my broad beta ox defect. Yesterday the pharmacist

decided to lower the dextrose further and substitute water as my BUN was

going up, maybe because of all the protein, but I don't know. Neither do

they. I'm hoping to be off TPN soon, but it all depends on what happens with

the taper off. Wed I worked up a protocol for simultaneously gearing up

J-tube and downsizing TPN, gave it to my PCP and he said fine, do it. I had

to explain that I didn't know IF it would work, only that I was going to

try. He was a bit crestfallen. We have found that taking Pepsid helps with

the raw gut pain. Who would have known something that simple would help? We

are also trying Peptamen, a predigested formula, as I haven't been able to

tolerate my old formula since the tube was pulled. It just runs through. I

was having trouble getting in medications and food, either by mouth or

J-tube. Calorie count got very low, triggered crisis 10 days ago. Tonight

I'm actually feeling half human, but mornings have been wretched. We are

lost in some metabolic maze. Not been this messed up since I've had the

tube, almost 3 years. Will check out the TPN list when I can. Thanks!! Hope

you are home to stay for a while. I saw your " bed head " pix and had to

laugh. Looks SO familiar.........

(((Hugs)))

B

>

> Barbara,

>

>

> I'm sorry your are having problems with your tube and are now doing the

TPN

> stuff via PICC. PICC's and I just don't get along! Are they adding any

> insulin to your TPN? How much lipids are you getting? Might I suggest

you

> check out the yahoo TPN list? There is a wealth of info there and lots of

> mito folks.

>

>

>

> Hugs,

> Kristie

[Guest guest]

Barbara you amaze me! Was your PICC put in by an IV team or through

Interventional Radiology? I had only one PICC done by the IV team and it

infiltrated and was infected in less than 24 hours. After that experience I

won't let one be done unless it is done by IR, in a surgical suite with

sterile fields! Is it a true PICC or a mid-line? I pray you don't have to

move it. I have way too many scars from PICCs being moved this year alone.

As far as the TPN stuff. I can tell you that I too make way too much

insulin and get very hypoglycemic coming off TPN, but for some reason no one

can seem to explain my pancreas shuts off while I'm on TPN and so we do add

insulin to my TPN and it has helped to even out the highs and lows. It is

something you might want to consider. I'm also on continuous TPN feeds at

this point so the only time I'm off is while I'm changing bags. It sure had

my docs baffled in the hospital, but heh whatever works. It does sound like

your pharmacist is on top of things. I'm still breaking mine in. They are

just beginning to get the mito picture. Oh, also wanted to mention that I

also add zantac directly to the TPN and that helps immensely with gut pain.

I hope you get this metabolic maze straightened out soon and are no worse

for the wear.

L&H,

Kristie

_____

From: [mailto: ] On Behalf

Of Barbara Seaman

Sent: Saturday, March 18, 2006 8:17 PM

To:

Subject: RE: how do you get by without stimulants?

Kristie! Hardly out of the hospital yourself! Bless you for responding. I

hate PICC's too and swore I'd never have one at home. Never say never, I

guess. The vein has gotten irritated, of course, so I've been applying warm

moist compresses 4x/day as instructed and it has helped. I was worried we'd

have to move it already. I do have a very good IV nurse who knows his stuff,

so that is comforting. I can call him anytime 24/7. No, definitely not

adding insulin as I make way too much all by myself, no deficiency there,

ha. I keep getting all the symptoms of excess insulin [profound weakness,

nausea, flushing] with the TPN, and then dreadful hypoglycemic stuff coming

off the TPN. We are tapering 1.5 hours now coming off and fiddling with

percentages of carbs, protein, fats, as well as lowering total TPN calories

to help smooth out the peaks and valleys. Lipids have always been under 20%

per my request due to my broad beta ox defect. Yesterday the pharmacist

decided to lower the dextrose further and substitute water as my BUN was

going up, maybe because of all the protein, but I don't know. Neither do

they. I'm hoping to be off TPN soon, but it all depends on what happens with

the taper off. Wed I worked up a protocol for simultaneously gearing up

J-tube and downsizing TPN, gave it to my PCP and he said fine, do it. I had

to explain that I didn't know IF it would work, only that I was going to

try. He was a bit crestfallen. We have found that taking Pepsid helps with

the raw gut pain. Who would have known something that simple would help? We

are also trying Peptamen, a predigested formula, as I haven't been able to

tolerate my old formula since the tube was pulled. It just runs through. I

was having trouble getting in medications and food, either by mouth or

J-tube. Calorie count got very low, triggered crisis 10 days ago. Tonight

I'm actually feeling half human, but mornings have been wretched. We are

lost in some metabolic maze. Not been this messed up since I've had the

tube, almost 3 years. Will check out the TPN list when I can. Thanks!! Hope

you are home to stay for a while. I saw your " bed head " pix and had to

laugh. Looks SO familiar.........

(((Hugs)))

B

>

> Barbara,

>

>

> I'm sorry your are having problems with your tube and are now doing the

TPN

> stuff via PICC. PICC's and I just don't get along! Are they adding any

> insulin to your TPN? How much lipids are you getting? Might I suggest

you

> check out the yahoo TPN list? There is a wealth of info there and lots of

> mito folks.

>

>

>

> Hugs,

> Kristie

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Barbara you amaze me! Was your PICC put in by an IV team or through

Interventional Radiology? I had only one PICC done by the IV team and it

infiltrated and was infected in less than 24 hours. After that experience I

won't let one be done unless it is done by IR, in a surgical suite with

sterile fields! Is it a true PICC or a mid-line? I pray you don't have to

move it. I have way too many scars from PICCs being moved this year alone.

As far as the TPN stuff. I can tell you that I too make way too much

insulin and get very hypoglycemic coming off TPN, but for some reason no one

can seem to explain my pancreas shuts off while I'm on TPN and so we do add

insulin to my TPN and it has helped to even out the highs and lows. It is

something you might want to consider. I'm also on continuous TPN feeds at

this point so the only time I'm off is while I'm changing bags. It sure had

my docs baffled in the hospital, but heh whatever works. It does sound like

your pharmacist is on top of things. I'm still breaking mine in. They are

just beginning to get the mito picture. Oh, also wanted to mention that I

also add zantac directly to the TPN and that helps immensely with gut pain.

I hope you get this metabolic maze straightened out soon and are no worse

for the wear.

L&H,

Kristie

_____

From: [mailto: ] On Behalf

Of Barbara Seaman

Sent: Saturday, March 18, 2006 8:17 PM

To:

Subject: RE: how do you get by without stimulants?

Kristie! Hardly out of the hospital yourself! Bless you for responding. I

hate PICC's too and swore I'd never have one at home. Never say never, I

guess. The vein has gotten irritated, of course, so I've been applying warm

moist compresses 4x/day as instructed and it has helped. I was worried we'd

have to move it already. I do have a very good IV nurse who knows his stuff,

so that is comforting. I can call him anytime 24/7. No, definitely not

adding insulin as I make way too much all by myself, no deficiency there,

ha. I keep getting all the symptoms of excess insulin [profound weakness,

nausea, flushing] with the TPN, and then dreadful hypoglycemic stuff coming

off the TPN. We are tapering 1.5 hours now coming off and fiddling with

percentages of carbs, protein, fats, as well as lowering total TPN calories

to help smooth out the peaks and valleys. Lipids have always been under 20%

per my request due to my broad beta ox defect. Yesterday the pharmacist

decided to lower the dextrose further and substitute water as my BUN was

going up, maybe because of all the protein, but I don't know. Neither do

they. I'm hoping to be off TPN soon, but it all depends on what happens with

the taper off. Wed I worked up a protocol for simultaneously gearing up

J-tube and downsizing TPN, gave it to my PCP and he said fine, do it. I had

to explain that I didn't know IF it would work, only that I was going to

try. He was a bit crestfallen. We have found that taking Pepsid helps with

the raw gut pain. Who would have known something that simple would help? We

are also trying Peptamen, a predigested formula, as I haven't been able to

tolerate my old formula since the tube was pulled. It just runs through. I

was having trouble getting in medications and food, either by mouth or

J-tube. Calorie count got very low, triggered crisis 10 days ago. Tonight

I'm actually feeling half human, but mornings have been wretched. We are

lost in some metabolic maze. Not been this messed up since I've had the

tube, almost 3 years. Will check out the TPN list when I can. Thanks!! Hope

you are home to stay for a while. I saw your " bed head " pix and had to

laugh. Looks SO familiar.........

(((Hugs)))

B

>

> Barbara,

>

>

> I'm sorry your are having problems with your tube and are now doing the

TPN

> stuff via PICC. PICC's and I just don't get along! Are they adding any

> insulin to your TPN? How much lipids are you getting? Might I suggest

you

> check out the yahoo TPN list? There is a wealth of info there and lots of

> mito folks.

>

>

>

> Hugs,

> Kristie

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

I rarely post to this board, mainly just try to read and learn.. I've

been overtly symptomatic for almost 2 years. I had a muscle biopsy 9

months ago with the diagnosis of disorder of cellular energetics, CPT II

deficiency vs VLCAD vs. Complex I defect-final genetic tests are pending

(biopsy by Shoffner).

My most debilitating symptom now is severe fatigue and sleepiness. My

level

of symptoms very closely corresponds to what you describe. I

have also tried to continue to work-although I recently had to cut back from

full time. There is absolutely no way I could do what I am able to do

without stimulants. I have taken Provigil, which helps tremendously,

although my physician had to double the dose I was on. I have also tried

Adderall,

which also really helped. I also try to drink caffefinated beverages to

help stay awake. As time goes on, this problem has progressed more than

others. Time off, where I sleep most of the time, seems to help for 1-3

days, then I'm back where I started from. I am on the cocktail, which

hasn't seemed to help. In fact, it is very hard for me to predict

exacerbations, except to say that stress-physical and mental-and inadequate

sleep do play a role.

In the meantime, I continue to take my provigil, just

thankful that something at least partially helps with one of my symptoms.

Just

wanted to let you know that I can relate and sympathize. Best of luck to

you,

and I hope you somehow get some improvement.

JT

how do you get by without stimulants?

> When they first thought I had MS I was started on stimulants, i.e.,

> ritalin, adderall, provigil, for the fatigue. I have had to switch

> them back and forth because the effect starts to wear off over time.

> Just about everyone I talked to with MS was on one of them. Now that

> I am being tested and treated for Mito, I haven't been able to find a

> single person with mito who is taking them.

>

> My doctor has left me on them pretty much because I can't get out of

> bed without them in the morning. I have tried numerous times but in

> five years I haven't been able to go a single day without them. If I

> try, I can't keep my eyes open, focused or stay awake for more than a

> few minutes.

>

> If I really do have mito, then how is it that everybody else with it

> doesn't need the stimulants like I do? How do you get through the

> day? The morning for that matter?

>

> One of my friends thinks that maybe I have developed an addiction to

> the stimulants and that the overwhelming fatigue I feel when I try to

> go without them is withdrawal and not necessarily the fatigue I would

> feel just due to the mito. If that's a possibility it would help me

> to know just how much fatigue others have. If you work, have you

> ever fallen asleep at your desk? Have you had to pull over just

> driving home because you might fall asleep? Do you feel sometimes

> that you are barely conscious? Sometimes, I don't have the energy to

> make a phone call or have a simple conversation with someone about

> the weather. Do you have that much fatigue?

>

> Thanks for your input.

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the postings

> and consult with their physicians regarding changes in their own

> treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the

> attack.

>

>

[Guest guest]

TPN stands for total parenteral nutrition or in other words, intravenous

nutrition that goes straight into the veins. People may need TPN for a variety

of reasons but most often people with mito need it for dysmotility of the

stomach or gut that prevents us from being able to eat or absorb enough

nutrients. This website may have further info. on TPN and tube feedings into the

stomach or small intestine _www.oley.org_ (http://www.oley.org)

TPN must be delivered into a central vein, meaning a vein near the heart.

This is b/c the osmolarity of TPN is too viscous to go into a peripheral vein.

Oftentimes, high sugar content, high potassium and other things in TPN can

make peripheral administration difficult. Thus, many people on TPN have a

central line. There are several kinds of central lines--hickmans, broviacs,

ports,

and PICCs to name a few. PICC lines are peripherally inserted central

catheters. This basically means that they insert a long spaghetti like tube in

a

vein near your elbow and they thread it all the way up the vein till the tip of

the tube rests near your heart. This way, TPN can be delivered into a central

vein.

Low blood sugar (also called hypoglycemia) occurs oftentimes when someone is

fasting or if you have a condition that produces too much insulin in your

body. Low blood sugar can also occur in diabetics if they have given themselves

too much insulin and haven't eaten enough. Symptoms of low blood sugar can

be tremulousness, sweating, shaking, confusion, dizziness and many others. If

you do a google search on hypoglycemia, you will probably find lots of links

on low blood sugar describing what it is and what the symptoms are.

The most accurate way to find out if your blood sugar is low is to get a

glucometer which will give you a measurement of how much sugar is in your blood

(around 70-120 is normal). If there is a high suspicion of low blood sugar

then you can ask your doctor to prescribe you a glucometer. Sometimes insurance

will pay for it. However, an informal way to see if low blood sugar is

causing your confusion would be to drink a glass of orange juice and eat a

carbohydrate (bread and peanut butter, etc) when you feel this way. If your

symptoms

of confusion start to clear up, then you may have been experiencing

hypoglycemia.

Lots of things can cause confusion though, so it's important for your doctor

to rule out other causes. Always pass your concerns by your doctor before

doing any sort of suggestion on your own.

Hope these explanations help.

Malisa

In a message dated 3/19/2006 11:41:34 A.M. Eastern Standard Time,

issnowwhite54@... writes:

hello, I am trying to acquaint myself with these

abbreviations. Could you tell me what TPN means, and

PICC? I also hear alot about blood sugar problems

etc.And the problems that occur. Such as confussion

problems? Could you explain that alittle more. I am

new do this disease, and I have many issues that I am

checking out. I've been reading alot of articles that

have helped. But right now I am working on confussion

issues.What is exactly low blood sugar, how do you

find out is yours is low, etc? Please help me fill in

these blank areas?

[Guest guest]

hello, I am trying to acquaint myself with these

abbreviations. Could you tell me what TPN means, and

PICC? I also hear alot about blood sugar problems

etc.And the problems that occur. Such as confussion

problems? Could you explain that alittle more. I am

new do this disease, and I have many issues that I am

checking out. I've been reading alot of articles that

have helped. But right now I am working on confussion

issues.What is exactly low blood sugar, how do you

find out is yours is low, etc? Please help me fill in

these blank areas?

--- Malilibear@... wrote:

>

> Hi Barbara,

> I'm sorry to hear you're having a rough time right

> now. Have you thought

> about running your TPN over a longer period of time

> to keep your blood sugars

> more stabilized? Heidi C. has an issue with diabetes

> and blood sugar issues

> and she runs her TPN over 24 hrs and can't be

> disconnected. I run mine over

> approx. 21 hrs/day right now b/c the longer I am

> off, the more trouble I have

> with blood sugars dropping low and confusion issues.

> They have tested my

> acylcarnitines off TPN and the longer I am off, the

> worse they get b/c of fasting.

> The pharmacist at my homecare co. has quite a few of

> us on long term TPN who

> have mito (probably 5-10 mito patients now out of

> the 120+ long term TPN

> consumers that they have) and he's getting fairly

> knowledgeable in the combined

> management of mito and TPN. If you want his contact

> info, please e-mail me

> offlist and I'd be happy to give it to you.

>

> Hope you start feeling better.

> Malisa

>

> In a message dated 3/18/2006 8:17:45 P.M. Eastern

> Standard Time,

> wheatchild@... writes:

>

> Kristie! Hardly out of the hospital yourself! Bless

> you for responding. I

> hate PICC's too and swore I'd never have one at

> home. Never say never, I

> guess. The vein has gotten irritated, of course, so

> I've been applying warm

> moist compresses 4x/day as instructed and it has

> helped. I was worried we'd

> have to move it already. I do have a very good IV

> nurse who knows his stuff,

> so that is comforting. I can call him anytime 24/7.

> No, definitely not

> adding insulin as I make way too much all by

> myself, no deficiency there,

> ha. I keep getting all the symptoms of excess

> insulin [profound weakness,

> nausea, flushing] with the TPN, and then dreadful

> hypoglycemic stuff coming

> off the TPN. We are tapering 1.5 hours now coming

> off and fiddling with

> percentages of carbs, protein, fats, as well as

> lowering total TPN calories

> to help smooth out the peaks and valleys. Lipids

> have always been under 20%

> per my request due to my broad beta ox defect.

> Yesterday the pharmacist

> decided to lower the dextrose further and substitute

> water as my BUN was

> going up, maybe because of all the protein, but I

> don't know. Neither do

> they. I'm hoping to be off TPN soon, but it all

> depends on what happens with

> the taper off. Wed I worked up a protocol for

> simultaneously gearing up

> J-tube and downsizing TPN, gave it to my PCP and he

> said fine, do it. I had

> to explain that I didn't know IF it would work, only

> that I was going to

> try. He was a bit crestfallen. We have found that

> taking Pepsid helps with

> the raw gut pain. Who would have known something

> that simple would help? We

> are also trying Peptamen, a predigested formula, as

> I haven't been able to

> tolerate my old formula since the tube was pulled.

> It just runs through. I

> was having trouble getting in medications and food,

> either by mouth or

> J-tube. Calorie count got very low, triggered crisis

> 10 days ago. Tonight

> I'm actually feeling half human, but mornings have

> been wretched. We are

> lost in some metabolic maze. Not been this messed up

> since I've had the

> tube, almost 3 years. Will check out the TPN list

> when I can. Thanks!! Hope

> you are home to stay for a while. I saw your " bed

> head " pix and had to

> laugh. Looks SO familiar.........

>

> (((Hugs)))

> B

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Sorry, that hasn't happened to me. Perhaps you mean " spyware " - that

is a cookie that keeps track of your other sites, that's pretty

common.

Take care,

RH

> > > >

> > > > > I also tried Provigil , didnt help at all...made me

> > > > > worse actually..

> > > >

> > > > And I feel TERRIBLE!!!! But what do you do? I'm really

> > > > scared that I'll soon be unable to work. As I'm the

> > > > primary breadwinner what will we do?

> > > >

> > > >

> > > >

> > > > Mom to the two best kids in the world!

> > > > http://www.caringbridge.org/visit/thomasandkatie

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

Malware is just another name for it. I believe it means malicious

software and it can install virus/trojans and track keystrokes too among

other things.

ohgminion wrote:

>Sorry, that hasn't happened to me. Perhaps you mean " spyware " - that

>is a cookie that keeps track of your other sites, that's pretty

>common.

>

>Take care,

>RH

>

>

>

>

>

>>Just wanted to alert the group that when I clicked on the enadh

>>

>>

>link below,

>

>

>>the site immediately attempted to load a Trojan horse on my

>>

>>

>machine, though

>

>

>>my software blocked it. I was surprised that a reputable company

>>

>>

>would have

>

>

>>malware on their site.

>>

>>Barbara

>>

>>

>>

[Guest guest]

The other thing is that we all essentially have different diseases

that affect our mitochondria. Even people with the same genetic

defect causing their mito disease can have different symptoms, and

different levels of disability.

I am a good and bad example of this - I have a complete lack of

activity in Complex I according to a fresh muscle biopsy test, but

can work 40+ hours per week (including commuting) and have severe

fatigue only at night. But even particularly for me, I had months

and months over the past 10 years where I couldn't drive due to

seizures, and would have to sleep for 30 minutes or more after

getting to work due to fatigue. I pursued most of my last two

degrees via telecommuting.

Others have had success with medications meant mainly for other

conditions, but since mitochondrial diseases are generally multi-

system, this might be expected. I had success with Mestinon for my

double vision, when they thought I had myasthenia gravis, although it

was later proven I definitely don't have that condition.

I'm sure this is all very confusing for people new to mitochondrial

diseases, but remember it is still confusing for many of us who have

been for years

Take care,

RH

>

> > I also tried Provigil , didnt help at all...made me

> > worse actually..

>

> And I feel TERRIBLE!!!! But what do you do? I'm really

> scared that I'll soon be unable to work. As I'm the

> primary breadwinner what will we do?

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

>

>

>