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A postscript re mito and headaches. I've recently found an unexpected " cure "

for my migraines---none for 6 weeks now and they had been occurring at the

rate of one or two per week for a long time. For reasons unrelated to

migraine, I had increased my night-time tube-fed calories from 450 to 600.

Ever since this change, I've had no migraines. They stopped suddenly and I

wondered why, of course. It took quite a while to connect these two events,

as there were other variables at the time. Then once for a few days I went

back to the 450 calories at night and bingo, another migraine. Now that I'm

back on 600, my head is free of that dreaded left-sided throbbing. I will

talk to my neuro about this next week but I do think this represents real

cause and effect, not coincidence, even though he has not wanted to connect

the migraines with my mito diagnosis. My brain has always had major problems

with overnight fast--early morning SLEs, etc---and somehow I think the

increased metabolic derangement at night must secondarily encourage

migraines. Anyway, shall see what Dr. C says. He is more open than your

headache doc and will listen respectfully, if nothing else.

Not that my story helps your headaches, of course, but is just another

illustration of how mito can intertwine secondarily with so many other

things.

Barbara

> This response from Columbia was very hopeful for me, especially since I

just today

> visited a neurologist here on Cape Cod, for headaches. This guy ignored

most of

> what I tried very diplomatically to show him. He HAD heard of

mitochondrial

> diseases, but characterized this as " muscular dystrophy " and therefore

certainly not

> the cause of my headaches (a bizarre conclusion IMHO). One of his

rationales was

> that I had mito only in the last five years, but I had these headaches all

my life. I

> tried to explain that my mito was an inborn mutation that typically shows

severe

> SYMPTOMS only later in life, but to no avail. He confused my strength with

my

> reported exercise intolerance, as have most doctors. He even dismissed my

MRIs

> which clearly show big lipomas on the back of my head, with obvious

potential for

> mass effect on blood vessels and nerves. He didn't really hear me when I

told him

> that I USED to get tension headaches but now it was quite different. So I

ended up

> with a scrip f

> or Elavil, and another appointment in two weeks. I'm debating whether to

continue

> with this probably useless doc. Any thoughts?

>

> Steve D.

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Barbara,

I get headaches during the day if my meals aren't what they should be or

not when they should be. Your poor head with saying: feed me!!!!!!

It is wonderful that you made the connection and it is a positive find

to boot. That would make a great deal of impact on quality of life

issues I would think. When I get a migraine, you might as well mark me

totally " off " until it is gone.

Hugs,

Barbara Seaman wrote:

>A postscript re mito and headaches. I've recently found an unexpected " cure "

>for my migraines---none for 6 weeks now and they had been occurring at the

>rate of one or two per week for a long time. For reasons unrelated to

>migraine, I had increased my night-time tube-fed calories from 450 to 600.

>Ever since this change, I've had no migraines. They stopped suddenly and I

>wondered why, of course. It took quite a while to connect these two events,

>as there were other variables at the time. Then once for a few days I went

>back to the 450 calories at night and bingo, another migraine. Now that I'm

>back on 600, my head is free of that dreaded left-sided throbbing. I will

>talk to my neuro about this next week but I do think this represents real

>cause and effect, not coincidence, even though he has not wanted to connect

>the migraines with my mito diagnosis. My brain has always had major problems

>with overnight fast--early morning SLEs, etc---and somehow I think the

>increased metabolic derangement at night must secondarily encourage

>migraines. Anyway, shall see what Dr. C says. He is more open than your

>headache doc and will listen respectfully, if nothing else.

>

>Not that my story helps your headaches, of course, but is just another

>illustration of how mito can intertwine secondarily with so many other

>things.

>

>Barbara

>

>

>

>

>

>>This response from Columbia was very hopeful for me, especially since I

>>

>>

>just today

>

>

>>visited a neurologist here on Cape Cod, for headaches. This guy ignored

>>

>>

>most of

>

>

>>what I tried very diplomatically to show him. He HAD heard of

>>

>>

>mitochondrial

>

>

>>diseases, but characterized this as " muscular dystrophy " and therefore

>>

>>

>certainly not

>

>

>>the cause of my headaches (a bizarre conclusion IMHO). One of his

>>

>>

>rationales was

>

>

>>that I had mito only in the last five years, but I had these headaches all

>>

>>

>my life. I

>

>

>>tried to explain that my mito was an inborn mutation that typically shows

>>

>>

>severe

>

>

>>SYMPTOMS only later in life, but to no avail. He confused my strength with

>>

>>

>my

>

>

>>reported exercise intolerance, as have most doctors. He even dismissed my

>>

>>

>MRIs

>

>

>>which clearly show big lipomas on the back of my head, with obvious

>>

>>

>potential for

>

>

>>mass effect on blood vessels and nerves. He didn't really hear me when I

>>

>>

>told him

>

>

>>that I USED to get tension headaches but now it was quite different. So I

>>

>>

>ended up

>

>

>>with a scrip f

>> or Elavil, and another appointment in two weeks. I'm debating whether to

>>

>>

>continue

>

>

>>with this probably useless doc. Any thoughts?

>>

>>Steve D.

>>

>>

>

>

>

>

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>

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>

>

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Hypoglycemia can certainly cause headaches...

Take care,

RH

>

> A postscript re mito and headaches. I've recently found an

unexpected " cure "

> for my migraines---none for 6 weeks now and they had been occurring

at the

> rate of one or two per week for a long time. For reasons unrelated

to

> migraine, I had increased my night-time tube-fed calories from 450

to 600.

> Ever since this change, I've had no migraines. They stopped

suddenly and I

> wondered why, of course. It took quite a while to connect these two

events,

> as there were other variables at the time. Then once for a few days

I went

> back to the 450 calories at night and bingo, another migraine. Now

that I'm

> back on 600, my head is free of that dreaded left-sided throbbing.

I will

> talk to my neuro about this next week but I do think this

represents real

> cause and effect, not coincidence, even though he has not wanted to

connect

> the migraines with my mito diagnosis. My brain has always had major

problems

> with overnight fast--early morning SLEs, etc---and somehow I think

the

> increased metabolic derangement at night must secondarily encourage

> migraines. Anyway, shall see what Dr. C says. He is more open than

your

> headache doc and will listen respectfully, if nothing else.

>

> Not that my story helps your headaches, of course, but is just

another

> illustration of how mito can intertwine secondarily with so many

other

> things.

>

> Barbara

>

>

>

> > This response from Columbia was very hopeful for me, especially

since I

> just today

> > visited a neurologist here on Cape Cod, for headaches. This guy

ignored

> most of

> > what I tried very diplomatically to show him. He HAD heard of

> mitochondrial

> > diseases, but characterized this as " muscular dystrophy " and

therefore

> certainly not

> > the cause of my headaches (a bizarre conclusion IMHO). One of his

> rationales was

> > that I had mito only in the last five years, but I had these

headaches all

> my life. I

> > tried to explain that my mito was an inborn mutation that

typically shows

> severe

> > SYMPTOMS only later in life, but to no avail. He confused my

strength with

> my

> > reported exercise intolerance, as have most doctors. He even

dismissed my

> MRIs

> > which clearly show big lipomas on the back of my head, with

obvious

> potential for

> > mass effect on blood vessels and nerves. He didn't really hear me

when I

> told him

> > that I USED to get tension headaches but now it was quite

different. So I

> ended up

> > with a scrip f

> > or Elavil, and another appointment in two weeks. I'm debating

whether to

> continue

> > with this probably useless doc. Any thoughts?

> >

> > Steve D.

>

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True, though I've never heard of it triggering migraines, have you? My

headaches are so very textbook typical of migraines, says my neuro. I do

have genuine hypoglycemia with several 30s recorded, but the drops don't

coincide with the migraines. Still I believe there is some

connection....just maybe not that direct. Perhaps something to do with my

hyperinsulinism? I'll see what my neuro thinks.

Barbara

> Hypoglycemia can certainly cause headaches...

>

> Take care,

> RH

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