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Hi everyone - asking for your thoughts again for my daughter (22).

First an update if you remember her last problem was acute pelvic pain which was

thought to be gynaecological as it seemed to come before and into her period.

Laparoscopy showed nothing significant. BC pill was tried continuously and it

made it much worse so after several dashes to emergency was finally ceased.

The pain was helped only by heat. It was unrelenting and I think broke her down

as she started blacking out (dx for this was neurocardiogenic vasovagal syncope

which some of you had mentioned already). Anyway we started her on Magnesium

Orotate 800 mg per day 2-3 months ago and amazingly the pain seems to have gone

away! Quite a miracle, so it must have been some sort of cramping or spasm.

As part of her mito investigations she has been to a gastroenterologist who is

checking her for dysmotility and he thinks that it might be related ie spasm of

the colon triggered by hormonal changes. Well hopefully it is gone and she is

not willing to stop the Mg Orotate to find out !

With one problem gone another has started and that is severe and frightening

depression which is so unlike how she has been in the past. I believe she is

in crisis the only thing I am not sure about is whether it is just a direct

result of feeling low about not being able to perform over the last few years

(she is constantly fatigued and sick, glands up etc) and this affected school

years and further study in photography . Or perhaps there is a biochemical

reason ie an energy crisis between the mitochondria and the brain (perhaps

related to all the pain she has been experiencing over the last year) . I feel

the latter must be closer or maybe its a combination. Penny has been on CoQ10

300 mg for a few months now and just started B2 - yet to try Carnitine but that

is next. Any other ideas and has anyone had anything similar? She is not

really responding that well to SSRI antidepressants at least yet (after a few

weeks on them) they are not enough to stop some dramatic episodes of sudden

diving into sobbing, shaking, episodes where she is terrified she might hurt

herself, temporary inability to function etc. Other times she is quite happy

and normal. I feel it has to be related to the mito. My thinking is that no

matter what you throw at someone they're not going to work if the energy

pathways are not there - does that make sense? I'm not sure whether she needs

more rest or more exercise - for sure we always strive for better nutrition.

Any ideas or experiences would be appreciated. Would be good to understand the

processes like some of you biochemistry wizards .. Pamela (Melas) about Penny

(also Melas)

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Pamela

I'm glad Penny's abdominal pain is gone. I wouldn't stop the mag

orotate to find out either.

As for depression. If I had to guess, and that is what it is, I'd say

it is a combination of her situation and neurochemical problems. It is

known that depression is caused by the same neuro-transmitter problem

as migraines. Does Penny have migraines? I have taken Paxil for

several years. It deals with the chemical problem and therefore has

reduced the migraines to almost nothing. I also take B-2. I also have

situational depression when things are going badly. It may be that

Penny needs a different med for the depression. There are many

different classes and one might work better for her than another. I

hope you get this problem worked out.

Hugs to you both,

laurie

>

>

>

>

>

>

> Hi everyone - asking for your thoughts again for my daughter (22).

>

> First an update if you remember her last problem was acute pelvic pain

> which was thought to be gynaecological as it seemed to come before and into

> her period. Laparoscopy showed nothing significant. BC pill was tried

> continuously and it made it much worse so after several dashes to emergency

> was finally ceased. The pain was helped only by heat. It was unrelenting and

> I think broke her down as she started blacking out (dx for this was

> neurocardiogenic vasovagal syncope which some of you had mentioned already).

> Anyway we started her on Magnesium Orotate 800 mg per day 2-3 months ago and

> amazingly the pain seems to have gone away! Quite a miracle, so it must have

> been some sort of cramping or spasm. As part of her mito investigations she

> has been to a gastroenterologist who is checking her for dysmotility and he

> thinks that it might be related ie spasm of the colon triggered by hormonal

> changes. Well hopefully it is gone and she is not willing to stop the Mg

> Orotate to find out !

>

> With one problem gone another has started and that is severe and

> frightening depression which is so unlike how she has been in the past. I

> believe she is in crisis the only thing I am not sure about is whether it is

> just a direct result of feeling low about not being able to perform over the

> last few years (she is constantly fatigued and sick, glands up etc) and this

> affected school years and further study in photography . Or perhaps there is

> a biochemical reason ie an energy crisis between the mitochondria and the

> brain (perhaps related to all the pain she has been experiencing over the

> last year) . I feel the latter must be closer or maybe its a combination.

> Penny has been on CoQ10 300 mg for a few months now and just started B2 -

> yet to try Carnitine but that is next. Any other ideas and has anyone had

> anything similar? She is not really responding that well to SSRI

> antidepressants at least yet (after a few weeks on them) they are not enough

> to stop some dramatic episodes of sudden diving into sobbing, shaking,

> episodes where she is terrified she might hurt herself, temporary inability

> to function etc. Other times she is quite happy and normal. I feel it has to

> be related to the mito. My thinking is that no matter what you throw at

> someone they're not going to work if the energy pathways are not there -

> does that make sense? I'm not sure whether she needs more rest or more

> exercise - for sure we always strive for better nutrition. Any ideas or

> experiences would be appreciated. Would be good to understand the processes

> like some of you biochemistry wizards .. Pamela (Melas) about Penny (also

> Melas)

>

>

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There are a number (albeit small) of individuals with mitochondrial disease or

other metabolic disease with severe depression or other spych issues, that seem

to respond very well to extremely high doses of vitatmin B12 taken sublingually.

IT isn't overly expensive so it might be worth trying. It doesn't taste great

but the clinical response has been remarkable.

pamelama33 pamelama33@...> wrote: Hi

everyone - asking for your thoughts again for my daughter (22).

First an update if you remember her last problem was acute pelvic pain which

was thought to be gynaecological as it seemed to come before and into her

period. Laparoscopy showed nothing significant. BC pill was tried continuously

and it made it much worse so after several dashes to emergency was finally

ceased. The pain was helped only by heat. It was unrelenting and I think

broke her down as she started blacking out (dx for this was neurocardiogenic

vasovagal syncope which some of you had mentioned already). Anyway we started

her on Magnesium Orotate 800 mg per day 2-3 months ago and amazingly the pain

seems to have gone away! Quite a miracle, so it must have been some sort of

cramping or spasm. As part of her mito investigations she has been to a

gastroenterologist who is checking her for dysmotility and he thinks that it

might be related ie spasm of the colon triggered by hormonal changes. Well

hopefully it is gone and she is not willing to stop the Mg

Orotate to find out !

With one problem gone another has started and that is severe and frightening

depression which is so unlike how she has been in the past. I believe she is

in crisis the only thing I am not sure about is whether it is just a direct

result of feeling low about not being able to perform over the last few years

(she is constantly fatigued and sick, glands up etc) and this affected school

years and further study in photography . Or perhaps there is a biochemical

reason ie an energy crisis between the mitochondria and the brain (perhaps

related to all the pain she has been experiencing over the last year) . I feel

the latter must be closer or maybe its a combination. Penny has been on CoQ10

300 mg for a few months now and just started B2 - yet to try Carnitine but that

is next. Any other ideas and has anyone had anything similar? She is not

really responding that well to SSRI antidepressants at least yet (after a few

weeks on them) they are not enough to stop some

dramatic episodes of sudden diving into sobbing, shaking, episodes where she is

terrified she might hurt herself, temporary inability to function etc. Other

times she is quite happy and normal. I feel it has to be related to the mito.

My thinking is that no matter what you throw at someone they're not going to

work if the energy pathways are not there - does that make sense? I'm not sure

whether she needs more rest or more exercise - for sure we always strive for

better nutrition. Any ideas or experiences would be appreciated. Would be

good to understand the processes like some of you biochemistry wizards .. Pamela

(Melas) about Penny (also Melas)

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My daughter has a clinical diagnosis of mito (She is 32.) She was

treated with Elavil, Prozac and Zoloft at different times for

depression. Zoloft worked best of any but was not too effective. It

takes time for those medicines to work. A seizure medicine was added,

I think Lamictal and that helped the most. She is off antidepressants

and Lamictal at the moment but is on 1500 mg of Neurontin daily. When

my daughter is in crisis she is psychotic. We have found D10 IV

effective in calming the waters. Good luck, Shelby

> Hi everyone - asking for your thoughts again for my daughter (22).

>

> First an update if you remember her last problem was acute pelvic

> pain which was thought to be gynaecological as it seemed to come

> before and into her period. Laparoscopy showed nothing significant. BC

> pill was tried continuously and it made it much worse so after several

> dashes to emergency was finally ceased. The pain was helped only by

> heat. It was unrelenting and I think broke her down as she started

> blacking out (dx for this was neurocardiogenic vasovagal syncope which

> some of you had mentioned already). Anyway we started her on Magnesium

> Orotate 800 mg per day 2-3 months ago and amazingly the pain seems to

> have gone away! Quite a miracle, so it must have been some sort of

> cramping or spasm. As part of her mito investigations she has been to

> a gastroenterologist who is checking her for dysmotility and he thinks

> that it might be related ie spasm of the colon triggered by hormonal

> changes. Well hopefully it is gone and she is not willing to stop the

> Mg Orotate to! find out !

>

> With one problem gone another has started and that is severe and

> frightening depression which is so unlike how she has been in the

> past. I believe she is in crisis the only thing I am not sure about is

> whether it is just a direct result of feeling low about not being able

> to perform over the last few years (she is constantly fatigued and

> sick, glands up etc) and this affected school years and further study

> in photography . Or perhaps there is a biochemical reason ie an energy

> crisis between the mitochondria and the brain (perhaps related to all

> the pain she has been experiencing over the last year) . I feel the

> latter must be closer or maybe its a combination. Penny has been on

> CoQ10 300 mg for a few months now and just started B2 - yet to try

> Carnitine but that is next. Any other ideas and has anyone had

> anything similar? She is not really responding that well to SSRI

> antidepressants at least yet (after a few weeks on them) they are not

> enough to stop some dramatic! episodes of sudden diving into sobbing,

> shaking, episodes where she is terrified she might hurt herself,

> temporary inability to function etc. Other times she is quite happy

> and normal. I feel it has to be related to the mito. My thinking is

> that no matter what you throw at someone they're not going to work if

> the energy pathways are not there - does that make sense? I'm not sure

> whether she needs more rest or more exercise - for sure we always

> strive for better nutrition. Any ideas or experiences would be

> appreciated. Would be good to understand the processes like some of

> you biochemistry wizards .. Pamela (Melas) about Penny (also Melas)

>

>

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Hi Pamela,

The news about Penny's pelvic pain is wonderful. (I'll update the

group on my hysterectomy results soon.) But I'm so sorry to hear about

the depression. It's truly an awful thing.

I don't have any advice or knowledge that would relate to the

depression. I just want to comment that I'm taking a much higher dose

of CoQ10. I take 1000 mg/day. It's increased my energy. I built up to

this dose gradually. With each increase, I got a little hyper, but

then I adapted. And I only take it with breakfast and lunch so it

doesn't interfere with sleep. I have no idea if increasing Penny's

dose would help (somehow I doubt it's the root cause of the problem),

but depression usually is a low-energy state so I wonder if extra

energy could help at least a bit.

All best wishes to both of you,

Shayna

>

> Hi everyone - asking for your thoughts again for my daughter (22).

>

> First an update if you remember her last problem was acute pelvic

pain which was thought to be gynaecological as it seemed to come

before and into her period. Laparoscopy showed nothing significant.

BC pill was tried continuously and it made it much worse so after

several dashes to emergency was finally ceased. The pain was helped

only by heat. It was unrelenting and I think broke her down as she

started blacking out (dx for this was neurocardiogenic vasovagal

syncope which some of you had mentioned already). Anyway we started

her on Magnesium Orotate 800 mg per day 2-3 months ago and amazingly

the pain seems to have gone away! Quite a miracle, so it must have

been some sort of cramping or spasm. As part of her mito

investigations she has been to a gastroenterologist who is checking

her for dysmotility and he thinks that it might be related ie spasm of

the colon triggered by hormonal changes. Well hopefully it is gone

and she is not willing to stop the Mg Orotate to find out !

>

> With one problem gone another has started and that is severe and

frightening depression which is so unlike how she has been in the

past. I believe she is in crisis the only thing I am not sure about

is whether it is just a direct result of feeling low about not being

able to perform over the last few years (she is constantly fatigued

and sick, glands up etc) and this affected school years and further

study in photography . Or perhaps there is a biochemical reason ie

an energy crisis between the mitochondria and the brain (perhaps

related to all the pain she has been experiencing over the last year)

.. I feel the latter must be closer or maybe its a combination.

Penny has been on CoQ10 300 mg for a few months now and just started

B2 - yet to try Carnitine but that is next. Any other ideas and has

anyone had anything similar? She is not really responding that well

to SSRI antidepressants at least yet (after a few weeks on them) they

are not enough to stop some dramatic episodes of sudden diving into

sobbing, shaking, episodes where she is terrified she might hurt

herself, temporary inability to function etc. Other times she is

quite happy and normal. I feel it has to be related to the mito.

My thinking is that no matter what you throw at someone they're not

going to work if the energy pathways are not there - does that make

sense? I'm not sure whether she needs more rest or more exercise -

for sure we always strive for better nutrition. Any ideas or

experiences would be appreciated. Would be good to understand the

processes like some of you biochemistry wizards .. Pamela (Melas)

about Penny (also Melas)

>

>

>

>

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