Re: Migraine

[Guest guest]

They aren't migraines. they are Chiari headaches.

Sounds like you need a new doctor. that one needs a baseball bat to the

head.

From:

[mailto: ] On Behalf Of DF

Sent: Wednesday, April 25, 2012 8:30 PM

To:

Subject: Migraine

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I

think it is highly likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

Yes, I have Chiari Type 1 and I also have very bad migraines.

 

 

  Herget

________________________________

To:

Sent: Wednesday, April 25, 2012 9:30 PM

Subject: Migraine

 

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic migraines

which have got worse and worse as I have got older. My neurologist says he does

not think the migraines are linked to Chiari/syringomyelia. I think it is highly

likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

You might consider it being mast cell disorders.  They are starting to be

linked with migraines.  (The brain's blood vessels are lined with mast

cells.)  Look into it.  There is a massive link between Chiari--Ehlers-Danlos

Syndrome--Mast Cell Diseases.  I didn't believe it until I read the research...

Subject: Re: Migraine

To: " "

< >

Date: Wednesday, April 25, 2012, 11:15 PM

 

Yes, I have Chiari Type 1 and I also have very bad migraines.

 

 

  Herget

________________________________

To:

Sent: Wednesday, April 25, 2012 9:30 PM

Subject: Migraine

 

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic migraines

which have got worse and worse as I have got older. My neurologist says he does

not think the migraines are linked to Chiari/syringomyelia. I think it is highly

likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

They most likely are...I would say. I was diagnosed with migraines prior to the

chiari diagnosis. I deal with very few headaches three years after surgery. I

had headaches ever since I can remember that also got worse the older I got. You

need to see a chiari specialist if you really want to get to the bottom of it.

Blessings, Cortney

[Guest guest]

I have Chiari I, decompressed in 2001, but still have to take propranolol daily

to prevent migraines.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: pac192@...

Date: Thu, 26 Apr 2012 01:30:23 +0000

Subject: Migraine

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

Do you have EDS?  If so, you are more prone to having mast cell issues.  I

wouldn't say this if it hadn't been the case in me.  I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI.  Finally found MC disease recently

due to research and found that the ACM/EDS connection goes to MC disease as

well.  As well, major research is finding now that MCs basically cause

migraines because of their mediators (stuff they release). 

The short of it is, trust me--this *is* something you will want to look into. 

It may not happen in you but it might in someone else reading it.  (I didn't

believe I had it until all of my symptoms post both surgeries was described by

MC disease...)

Subject: RE: Migraine

To: chiariconnectioninternational

Date: Thursday, April 26, 2012, 12:06 PM

 

I have Chiari I, decompressed in 2001, but still have to take propranolol daily

to prevent migraines.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: pac192@...

Date: Thu, 26 Apr 2012 01:30:23 +0000

Subject: Migraine

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic migraines

which have got worse and worse as I have got older. My neurologist says he does

not think the migraines are linked to Chiari/syringomyelia. I think it is highly

likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

I've had both migraines and chiari headaches in my life.  I can feel the

difference.  The chiari headaches come from the back of my head and neck or just

feel like pressure headaches.  The migraines are pretty much indescribable, but

feel very different.  So, I think it is possible to have both migraines and

chiari headaches independent of each other.  Just my humble opinion.

 

Ogden, Utah

Realism is for those who don't know how to DREAM BIG!

[Guest guest]

Hi,

I had my first decompression in 1990, I was left with 24/7 headaches that

were diagnosed as migraines. We tried all kinds of medication to help, but

it didn't. I fell in 1997 and landed on my head. All kinds of symptoms

started, and they told me I was cured, I didn't ave Chiari anymore. I

finally asked for a second opinion and they sent me to Dr. Milhorat. Between

Dr. M and Dr. B they have given my life back. I do have pain, but I don't

have to take pain meds every day.

Someone else brought up the neuro stimulator on the list. I had one placed

almost a year ago, and it has helped with my occipital pain. I'm thinking

about having another placed for my neck and shoulders.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

[Guest guest]

Please explain in more detail. I have chiari, eds, migraines, gand mal seizures,

thoracic outlet, fms, chronic fatigue syndrome

Sharon Lang

> Do you have EDS? If so, you are more prone to having mast cell issues. I

wouldn't say this if it hadn't been the case in me. I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI. Finally found MC disease recently

due to research and found that the ACM/EDS connection goes to MC disease as

well. As well, major research is finding now that MCs basically cause migraines

because of their mediators (stuff they release).

>

> The short of it is, trust me--this *is* something you will want to look into.

It may not happen in you but it might in someone else reading it. (I didn't

believe I had it until all of my symptoms post both surgeries was described by

MC disease...)

>

>

>

>

>

>

> Subject: RE: Migraine

> To: chiariconnectioninternational

> Date: Thursday, April 26, 2012, 12:06 PM

>

>

>

> I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> Lillian SantanaSan , Texas

>

> Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

>

> To:

>

> From: pac192@...

>

> Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> Subject: Migraine

>

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

[Guest guest]

Do some reading on Mast Cell Activation Syndrome (MCAS) or MCAD(isease).  There

are plenty of websites like:

http://www.tmsforacure.org/welcome.php

(Keep in mind that most of the time what we have is NOT systemic mastocytosis

(SM).  It is below that and above " non-sick " ...)

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

Great BB that has TONS of info, including from Brazil, an absolutely GREAT

source of info on MCAD/S (she was one of the first patients to be diagnosed with

this...and she's a mod there, too). 

A yahoo group called " The Elephant Project " is a great email group.  I found

most of my info there.  The guys and gals there are great.  I highly recommend

it.

First, mast cells mediate allergic reactions by releasing histamine and hundreds

of other chemicals that cause anything from menstruation in women to widespread,

undefined pain.  So, anything that you eat can trigger a reaction in you that

causes certain symptoms like pain, sleepiness, etc.  Just like chiari, everyone

is different and no two people will react to the same stuff the same way. 

Keep in mind if you go to an allergist/immunologist and ask them about this, be

prepared to fight.  This is BRAND NEW research.  In fact, they're finding that

*A LOT* of chronic diseases have their roots in malfunctioning mast cells. 

One note on this--MCAD/S is different from SM in that in SM, there is a

proliferation of mast cells throughout the body (like cancer).  In MCAD/S, you

have the correct # of cells, it's just that they're " trigger happy " and they

react to any tiny little factor.  For instance, " multiple chemical sensitivity "

is actually a mast cell disorder.  That is well-known.

FYI, some of the world's top specialists in this are Dr Lawrence Afrin in

ton, SC, Dr Castells in Boston, MA and another in Virginia I can't

remember the name of.  Dr Afrin is the doc who coined the " MCAD " name and

started the research in it.  He is a GREAT doc. 

I hope this isn't too much.  Let me know if you have any more questions. 

Don't hesitate at all--I love to help people navigate this crud that I had to as

well...

>

>

> Subject: RE: Migraine

> To: chiariconnectioninternational

> Date: Thursday, April 26, 2012, 12:06 PM

>

>

>

> I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> Lillian SantanaSan , Texas

>

> Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

>

> To:

>

> From: pac192@...

>

> Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> Subject: Migraine

>

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

[Guest guest]

Can anything be done for MC?

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: drledford93@...

Date: Thu, 26 Apr 2012 10:13:26 -0700

Subject: RE: Migraine

Do you have EDS? If so, you are more prone to having mast cell issues. I

wouldn't say this if it hadn't been the case in me. I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI. Finally found MC disease recently

due to research and found that the ACM/EDS connection goes to MC disease as

well. As well, major research is finding now that MCs basically cause migraines

because of their mediators (stuff they release).

The short of it is, trust me--this *is* something you will want to look into.

It may not happen in you but it might in someone else reading it. (I didn't

believe I had it until all of my symptoms post both surgeries was described by

MC disease...)

Subject: RE: Migraine

To: chiariconnectioninternational

Date: Thursday, April 26, 2012, 12:06 PM

I have Chiari I, decompressed in 2001, but still have to take propranolol daily

to prevent migraines.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: pac192@...

Date: Thu, 26 Apr 2012 01:30:23 +0000

Subject: Migraine

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic migraines

which have got worse and worse as I have got older. My neurologist says he does

not think the migraines are linked to Chiari/syringomyelia. I think it is highly

likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

I agree. For me, the chiari headache was more crushing, where the migraine was

more pounding... in general, that is. However, it got to the point where

everything turned into a migraine.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: rachelteddy2@...

Date: Thu, 26 Apr 2012 10:43:05 -0700

Subject: RE: Migraine

I've had both migraines and chiari headaches in my life. I can feel the

difference. The chiari headaches come from the back of my head and neck or just

feel like pressure headaches. The migraines are pretty much indescribable, but

feel very different. So, I think it is possible to have both migraines and

chiari headaches independent of each other. Just my humble opinion.

Ogden, Utah

Realism is for those who don't know how to DREAM BIG!

[Guest guest]

Oh yeah, plenty.  However, there is no *total* cure.  What, in effect, you are

trying to do is to get your MCs to stop over producing their mediators like

histamine.  They produce somewhere north of 200 of these chemicals, all of

which have some effect in your body.  Most of these are very (1/100 of a

second) short lived.  So, it's very difficult if not impossible to control some

of them.  But, you can control some of the more bothersome ones.

Antihistamines (H1 and H2 blockers) like Zyrtec and Zantac are often times

prescribed together.  (People with this often have nausea caused by GERD or

gastritis.)  That helps a lot of people.  Aspirin helped me tremendously with

pain that oxycodone and fentanyl together could not control!  One little

aspirin!  Yep, it inhibits prostaglandins, the messenger chemicals that can

induce pain.  It's a fascinating area.  Just DO NOT expect any doc you talk

with to know ANYTHING about MCAD.  They'll understand SM but that's a different

animal...

Subject: RE: Migraine

To: chiariconnectioninternational

Date: Thursday, April 26, 2012, 12:06 PM

I have Chiari I, decompressed in 2001, but still have to take propranolol daily

to prevent migraines.

Lillian SantanaSan , Texas

Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

To:

From: pac192@...

Date: Thu, 26 Apr 2012 01:30:23 +0000

Subject: Migraine

I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic migraines

which have got worse and worse as I have got older. My neurologist says he does

not think the migraines are linked to Chiari/syringomyelia. I think it is highly

likely that they are.

Are there any other Chiairi sufferers out there who have migraine?

[Guest guest]

Interesting. I have neurally mediated hypotension, it is listed as associated

with eds as pots. I think nmh has to do with the heart not pumping blood from

the extremities due to miscommunication from the brain. I pass out often

Sharon Lang

> Do some reading on Mast Cell Activation Syndrome (MCAS) or MCAD(isease).

There are plenty of websites like:

>

> http://www.tmsforacure.org/welcome.php

>

> (Keep in mind that most of the time what we have is NOT systemic mastocytosis

(SM). It is below that and above " non-sick " ...)

>

> http://mastcelldisorders.wallack.us/yabb/YaBB.pl

>

> Great BB that has TONS of info, including from Brazil, an absolutely

GREAT source of info on MCAD/S (she was one of the first patients to be

diagnosed with this...and she's a mod there, too).

>

> A yahoo group called " The Elephant Project " is a great email group. I found

most of my info there. The guys and gals there are great. I highly recommend

it.

>

> First, mast cells mediate allergic reactions by releasing histamine and

hundreds of other chemicals that cause anything from menstruation in women to

widespread, undefined pain. So, anything that you eat can trigger a reaction in

you that causes certain symptoms like pain, sleepiness, etc. Just like chiari,

everyone is different and no two people will react to the same stuff the same

way.

>

> Keep in mind if you go to an allergist/immunologist and ask them about this,

be prepared to fight. This is BRAND NEW research. In fact, they're finding

that *A LOT* of chronic diseases have their roots in malfunctioning mast cells.

>

> One note on this--MCAD/S is different from SM in that in SM, there is a

proliferation of mast cells throughout the body (like cancer). In MCAD/S, you

have the correct # of cells, it's just that they're " trigger happy " and they

react to any tiny little factor. For instance, " multiple chemical sensitivity "

is actually a mast cell disorder. That is well-known.

>

> FYI, some of the world's top specialists in this are Dr Lawrence Afrin in

ton, SC, Dr Castells in Boston, MA and another in Virginia I can't

remember the name of. Dr Afrin is the doc who coined the " MCAD " name and

started the research in it. He is a GREAT doc.

>

> I hope this isn't too much. Let me know if you have any more questions.

Don't hesitate at all--I love to help people navigate this crud that I had to as

well...

>

>

>

>

>

> >

>

> >

>

> > Subject: RE: Migraine

>

> > To: chiariconnectioninternational

>

> > Date: Thursday, April 26, 2012, 12:06 PM

>

> >

>

> >

>

> >

>

> > I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> >

>

> > Lillian SantanaSan , Texas

>

> >

>

> > Life is not about waiting for the storms to pass...it's about learning how

to Dance in the Rain.

>

> >

>

> > To:

>

> >

>

> > From: pac192@...

>

> >

>

> > Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> >

>

> > Subject: Migraine

>

> >

>

> > I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> >

>

> > Are there any other Chiairi sufferers out there who have migraine?

>

> >

>

> >

>

> >

>

> >

[Guest guest]

Hi I mostly lurk but had to reply to this.

I have ACM1 with Syrinx and I suffer from complex migraines. I don't usually get

a headache (very rarely have headaches anyway) but do have during the aura part

of the migraine what looks like a seizure even though I'm awake and able (just)

to talk. People forget migraine is more than just a headache. My migraine used

to be called basilar type migraine because it affects the basilar artery at the

base of the skull/brain. I can't take the normal anti migraine meds (tryptans)

because of how they work, they could cause a stroke. The only meds I can take

for migraine are propanolol or pizotifen.

I have been told my ACM and migraine are not linked but I think they are. For me

there is a great difference between a 'pressure' headache caused by ACM and a

migraine headache.

>

> Yes, I have Chiari Type 1 and I also have very bad migraines.

>

>  

>  

>

>   Herget

>

>

> ________________________________

>

> To:

> Sent: Wednesday, April 25, 2012 9:30 PM

> Subject: Migraine

>

>

>  

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

>

[Guest guest]

NMH is what docs say when they don't know what else it could be.  I was also

diagnosed with that, long before I knew anything about POTS (Postural

Tachycardia Syndrome) or dysautonomia.  Both are very common in EDS patients. 

I do have dysautonomia but not POTS.

Whatever you do with this info, don't just trust docs, especially about the

NMH.  This sounds like POTS to me (unless you've been tested for it and came up

negative).  Check out some of the symptoms. And yes, POTS is connected with MC

disease.  It's all interrelated in a big ol' jumbled mess.  Just like us!  =)

>

> >

>

> >

>

> > Subject: RE: Migraine

>

> > To: chiariconnectioninternational

>

> > Date: Thursday, April 26, 2012, 12:06 PM

>

> >

>

> >

>

> >

>

> > I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> >

>

> > Lillian SantanaSan , Texas

>

> >

>

> > Life is not about waiting for the storms to pass...it's about learning how

to Dance in the Rain.

>

> >

>

> > To:

>

> >

>

> > From: pac192@...

>

> >

>

> > Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> >

>

> > Subject: Migraine

>

> >

>

> > I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> >

>

> > Are there any other Chiairi sufferers out there who have migraine?

>

> >

>

> >

>

> >

>

> >

[Guest guest]

One interesting theory on migraines is that the blood vessels in the brain swell

and that causes the headache.  What they found in studying this is that mast

cells line these blood vessels.  Why this is important is that these MCs

control inflammation in the body!  If these get triggered by any little thing,

they could very well spurt out a whole bunch of he chemical that makes the body

inflame, thus causing a headache. 

I really don't mean to keep beating this horse but this is a *huge* area of new

research.  MCs are starting to be blamed for *many* chronic diseases whose

etiology was unknown.  Migraines may very well be one of them.

Subject: Re: Migraine

To:

Date: Friday, April 27, 2012, 8:06 AM

 

Hi I mostly lurk but had to reply to this.

I have ACM1 with Syrinx and I suffer from complex migraines. I don't usually get

a headache (very rarely have headaches anyway) but do have during the aura part

of the migraine what looks like a seizure even though I'm awake and able (just)

to talk. People forget migraine is more than just a headache. My migraine used

to be called basilar type migraine because it affects the basilar artery at the

base of the skull/brain. I can't take the normal anti migraine meds (tryptans)

because of how they work, they could cause a stroke. The only meds I can take

for migraine are propanolol or pizotifen.

I have been told my ACM and migraine are not linked but I think they are. For me

there is a great difference between a 'pressure' headache caused by ACM and a

migraine headache.

>

> Yes, I have Chiari Type 1 and I also have very bad migraines.

>

>  

>  

>

>   Herget

>

>

> ________________________________

>

> To:

> Sent: Wednesday, April 25, 2012 9:30 PM

> Subject: Migraine

>

>

>  

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

>

[Guest guest]

I had the tilt table test for nhm. Passed out in under a minute. The test is

supposed to be 90 min long

My chiari is acquired, not genetic. Car wreck with underlying eds. Not sure mc

would apply here

Sharon Lang

> NMH is what docs say when they don't know what else it could be. I was also

diagnosed with that, long before I knew anything about POTS (Postural

Tachycardia Syndrome) or dysautonomia. Both are very common in EDS patients. I

do have dysautonomia but not POTS.

>

> Whatever you do with this info, don't just trust docs, especially about the

NMH. This sounds like POTS to me (unless you've been tested for it and came up

negative). Check out some of the symptoms. And yes, POTS is connected with MC

disease. It's all interrelated in a big ol' jumbled mess. Just like us! =)

>

>

>

>

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > Subject: RE: Migraine

>

> >

>

> > > To: chiariconnectioninternational

>

> >

>

> > > Date: Thursday, April 26, 2012, 12:06 PM

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> >

>

> > >

>

> >

>

> > > Lillian SantanaSan , Texas

>

> >

>

> > >

>

> >

>

> > > Life is not about waiting for the storms to pass...it's about learning how

to Dance in the Rain.

>

> >

>

> > >

>

> >

>

> > > To:

>

> >

>

> > >

>

> >

>

> > > From: pac192@...

>

> >

>

> > >

>

> >

>

> > > Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> >

>

> > >

>

> >

>

> > > Subject: Migraine

>

> >

>

> > >

>

> >

>

> > > I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> >

>

> > >

>

> >

>

> > > Are there any other Chiairi sufferers out there who have migraine?

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

[Guest guest]

According to the handbook pg 33 you can have both. It is definitely nmh if you

pass out during tilt table, but my heart does race will get results. Thanks

I tried to coppy url for you

Sharon Lang

> Do you have EDS? If so, you are more prone to having mast cell issues. I

wouldn't say this if it hadn't been the case in me. I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI. Finally found MC disease recently

due to research and found that the ACM/EDS connection goes to MC disease as

well. As well, major research is finding now that MCs basically cause migraines

because of their mediators (stuff they release).

>

> The short of it is, trust me--this *is* something you will want to look into.

It may not happen in you but it might in someone else reading it. (I didn't

believe I had it until all of my symptoms post both surgeries was described by

MC disease...)

>

>

>

>

>

>

> Subject: RE: Migraine

> To: chiariconnectioninternational

> Date: Thursday, April 26, 2012, 12:06 PM

>

>

>

> I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> Lillian SantanaSan , Texas

>

> Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

>

> To:

>

> From: pac192@...

>

> Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> Subject: Migraine

>

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

[Guest guest]

I had migraines all my life, two things help me: medicines to low down

prolactine as I had it high due to the pituitary gland full of CSF, as these

medicines lowred down intracranial pressure they took away the pain for 10

years, until they did not work any more as the IC increased. The other thing

that has help me a lot in reducing migraines is potassium, high dossages of

potasium. It is rare but I alwyas had these migraines in my right side of my

head, and since I take potasium I have no migraines, but I have to take 2

tablets in the morning and two tablets at night, and even though I take huge

amounts of potasium my blood potasium levels are in the middle. Perhaps I am

a rare case, as I have many CSF leaks, eventhoug I have a lumbar shunt, so

perhaps the reason of my migraines is more related to loose LCR than to a

vascular issue, however LCR and blood vesels are related.

De:

Responder a: < >

Fecha: viernes 27 de abril de 2012 07:48

Para: < >

Asunto: Re: Re: Migraine

One interesting theory on migraines is that the blood vessels in the brain

swell and that causes the headache. What they found in studying this is

that mast cells line these blood vessels. Why this is important is that

these MCs control inflammation in the body! If these get triggered by any

little thing, they could very well spurt out a whole bunch of he chemical

that makes the body inflame, thus causing a headache.

I really don't mean to keep beating this horse but this is a *huge* area of

new research. MCs are starting to be blamed for *many* chronic diseases

whose etiology was unknown. Migraines may very well be one of them.

From: shirleycatuk <shirleycatuk@...

<mailto:shirleycatuk%40ntlworld.com> >

Subject: Re: Migraine

To:

<mailto:%40yahoogroups.com>

Date: Friday, April 27, 2012, 8:06 AM

Hi I mostly lurk but had to reply to this.

I have ACM1 with Syrinx and I suffer from complex migraines. I don't usually

get a headache (very rarely have headaches anyway) but do have during the

aura part of the migraine what looks like a seizure even though I'm awake

and able (just) to talk. People forget migraine is more than just a

headache. My migraine used to be called basilar type migraine because it

affects the basilar artery at the base of the skull/brain. I can't take the

normal anti migraine meds (tryptans) because of how they work, they could

cause a stroke. The only meds I can take for migraine are propanolol or

pizotifen.

I have been told my ACM and migraine are not linked but I think they are.

For me there is a great difference between a 'pressure' headache caused by

ACM and a migraine headache.

>

> Yes, I have Chiari Type 1 and I also have very bad migraines.

>

> Â

> Â

>

> Â Herget

>

>

> ________________________________

>

> To:

<mailto:%40yahoogroups.com>

> Sent: Wednesday, April 25, 2012 9:30 PM

> Subject: Migraine

>

>

> Â

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

>

[Guest guest]

If you have eds, your propensity for mcg disease is very high, regardless of

acm.

From my HTC Sensation 4G on T-Mobile. The first nationwide 4G network

----- Reply message -----

To: " "

< >

Subject: Migraine

Date: Fri, Apr 27, 2012 9:08 am

I had the tilt table test for nhm. Passed out in under a minute. The test is

supposed to be 90 min long

My chiari is acquired, not genetic. Car wreck with underlying eds. Not sure mc

would apply here

Sharon Lang

> NMH is what docs say when they don't know what else it could be. I was also

diagnosed with that, long before I knew anything about POTS (Postural

Tachycardia Syndrome) or dysautonomia. Both are very common in EDS patients. I

do have dysautonomia but not POTS.

>

> Whatever you do with this info, don't just trust docs, especially about the

NMH. This sounds like POTS to me (unless you've been tested for it and came up

negative). Check out some of the symptoms. And yes, POTS is connected with MC

disease. It's all interrelated in a big ol' jumbled mess. Just like us! =)

>

>

>

>

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > Subject: RE: Migraine

>

> >

>

> > > To: chiariconnectioninternational

>

> >

>

> > > Date: Thursday, April 26, 2012, 12:06 PM

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > > I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> >

>

> > >

>

> >

>

> > > Lillian SantanaSan , Texas

>

> >

>

> > >

>

> >

>

> > > Life is not about waiting for the storms to pass...it's about learning how

to Dance in the Rain.

>

> >

>

> > >

>

> >

>

> > > To:

>

> >

>

> > >

>

> >

>

> > > From: pac192@...

>

> >

>

> > >

>

> >

>

> > > Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> >

>

> > >

>

> >

>

> > > Subject: Migraine

>

> >

>

> > >

>

> >

>

> > > I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> >

>

> > >

>

> >

>

> > > Are there any other Chiairi sufferers out there who have migraine?

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

>

> >

>

> > >

[Guest guest]

As my dysautonomia specialist said, " It doesn't count if you took nitro and

passed out. " . IOW, it's cheating.

It's also a lot like migraines or depression. If docs don't know what you have,

they'll lump you into one of the above diagnoses and pretty much forget about

it. It is sick but true.

From my HTC Sensation 4G on T-Mobile. The first nationwide 4G network

----- Reply message -----

To: " "

< >

Subject: Migraine

Date: Fri, Apr 27, 2012 9:22 am

According to the handbook pg 33 you can have both. It is definitely nmh if you

pass out during tilt table, but my heart does race will get results. Thanks

I tried to coppy url for you

Sharon Lang

> Do you have EDS? If so, you are more prone to having mast cell issues. I

wouldn't say this if it hadn't been the case in me. I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI. Finally found MC disease recently

due to research and found that the ACM/EDS connection goes to MC disease as

well. As well, major research is finding now that MCs basically cause migraines

because of their mediators (stuff they release).

>

> The short of it is, trust me--this *is* something you will want to look into.

It may not happen in you but it might in someone else reading it. (I didn't

believe I had it until all of my symptoms post both surgeries was described by

MC disease...)

>

>

>

>

>

>

> Subject: RE: Migraine

> To: chiariconnectioninternational

> Date: Thursday, April 26, 2012, 12:06 PM

>

>

>

> I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

>

> Lillian SantanaSan , Texas

>

> Life is not about waiting for the storms to pass...it's about learning how to

Dance in the Rain.

>

> To:

>

> From: pac192@...

>

> Date: Thu, 26 Apr 2012 01:30:23 +0000

>

> Subject: Migraine

>

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>

[Guest guest]

I took nothing and passed out

Sharon Lang

On Apr 27, 2012, at 10:23 AM, " drledford93@... "

wrote:

> As my dysautonomia specialist said, " It doesn't count if you took nitro and

passed out. " . IOW, it's cheating.

>

> It's also a lot like migraines or depression. If docs don't know what you

have, they'll lump you into one of the above diagnoses and pretty much forget

about it. It is sick but true.

>

> From my HTC Sensation 4G on T-Mobile. The first nationwide 4G network

>

> ----- Reply message -----

>

> To: " "

< >

> Subject: Migraine

> Date: Fri, Apr 27, 2012 9:22 am

>

> According to the handbook pg 33 you can have both. It is definitely nmh if you

pass out during tilt table, but my heart does race will get results. Thanks

>

> I tried to coppy url for you

>

> Sharon Lang

>

>

>

> > Do you have EDS? If so, you are more prone to having mast cell issues. I

wouldn't say this if it hadn't been the case in me. I was decompressed in '01

(dr oro) and had TC surgery in '08 at TCI. Finally found MC disease recently due

to research and found that the ACM/EDS connection goes to MC disease as well. As

well, major research is finding now that MCs basically cause migraines because

of their mediators (stuff they release).

> >

> > The short of it is, trust me--this *is* something you will want to look

into. It may not happen in you but it might in someone else reading it. (I

didn't believe I had it until all of my symptoms post both surgeries was

described by MC disease...)

> >

> >

> >

> >

> >

> >

> > Subject: RE: Migraine

> > To: chiariconnectioninternational

> > Date: Thursday, April 26, 2012, 12:06 PM

> >

> >

> >

> > I have Chiari I, decompressed in 2001, but still have to take propranolol

daily to prevent migraines.

> >

> > Lillian SantanaSan , Texas

> >

> > Life is not about waiting for the storms to pass...it's about learning how

to Dance in the Rain.

> >

> > To:

> >

> > From: pac192@...

> >

> > Date: Thu, 26 Apr 2012 01:30:23 +0000

> >

> > Subject: Migraine

> >

> > I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

> >

> > Are there any other Chiairi sufferers out there who have migraine?

> >

> >

> >

> >

[Guest guest]

I have migraines, pre- and post- decompression. Dr. said that with

decompression some of the triggering might reduce but the migraines were a

differentr mechanism. Over the years the only pattern has been a lack of a

pattern.

Two years ago, a gastro gave me low dose elavil for IBS and my migraines, well I

averaged 15-25 a month, now I average 5 a month. (I judge it by when I need

Imitrex for relief.)

MC might describe the IBS and migraines, allergies and asthma, plus other stuff.

Hanna

Sent fromm my phone. Please excse typos and short messages.

Migraine

>

> I have Chiari 1 and syringomyelia (C1-C5). I also suffer from chronic

migraines which have got worse and worse as I have got older. My neurologist

says he does not think the migraines are linked to Chiari/syringomyelia. I think

it is highly likely that they are.

>

> Are there any other Chiairi sufferers out there who have migraine?

>

>

>

>