Re: Severe Nosebleeds and EDS???

[Guest guest]

Janet

Go have another cup of coffee will ya!! <laughing>

Vidoetape whilst sleeping.......... What a nightmare!!? NO....

What a HORROR Story! Hey!! It could be a best seller!

No... I couldn't be that lucky.... besides noone wants to watch

an invalid snoring with their mouth wide open in the middle of

the night.

Go back to bed GIRL !! <Laughing>

Hugz........... Helen

Okay, I'll wake up in a minute...It's only 2:16pm and I'm still on

my first cup of joe.

Love y'all.....Janet : )

[Guest guest]

Hi Donna,

As a child and young teen, I had these severe nosebleeds and had my

nose packed so very often and cauterized several times before the bleeding

stopped. The only other time it has happened was during my first pregnancy

at age 18, and it was also quite severe. The ENT again cauterized my veins

in my nose in several places and it has never happened again

severely......just occasionally " normal " nosebleeds from it getting struck

accidentally by dog and babies heads thru the years. (Grace didn't come with

my EDS! LOL)

Back then, they also used the pinching method, plus ice on the back of

my neck--then you were freezing and bleeding!

I sure hope this gets better soon for you.

hugs,

Sue

[Guest guest]

Hi everyone,

I have been pretty quiet lately but I would like to get some feedback

about nosebeeds and EDS. I rememebr Jeff G. had some very bad bouts a

few years ago, and others at that time talked about theirs, but up

until now I have never expereinced them except for slight ones due to

dry weather.

What is the connection if any? Are Eders more prone to them or have

them heavier? I have had 2 incidences in 48 hours, the first sent me to

the hospital here as we could not stop it and i was hemmorraging large

clots and it was very heavy. At the hospital they did blood pressure

and platette count and I was within normal range in both. Two days

later I had another one , but this time i didn't PANIC and used the

procedure they told me of pinching my nose.still it took almost 45

minutes for it to stop altough it wasn't as severe.

The next day, iI went to a Nose Dr. and he sent for exams of my blood

Pt and PTT and they came back within normal range too. He made me get a

sinus cavity x-ray and that showed basically a sinus infection or

chronic thickening of the mucosal walls. He has me on a week of

antibiotics, decongestant nosedrops and an antihstamine to see if this

helps, but he said it seemed to him to be more of a case of sudden

hypertension.

I normally have good blood pressure and I am on 100mg, of atenolol for

heart rythmns and that keeps me cool..have any of you had these?

I feel slightly nervous about them and am afraid of the " next attack "

and i will be out or away from home or something.

Ramadan is starting tomorrow and this means daytime fasting of even

water. I hope it will have a good affect on this condition!!!!

All your feedback on the subject would be most welcome as I feel a

little alone here on this!!

Thanks alot,

Hus,\

Donna

HEDS

Jordan

----- Mensaje Original -----

De: and Carole

Fecha: Miercoles, Noviembre 14, 2001 8:34 pm

Asunto: Re: New Article

> Jill,

>

> I would love to get this article, I am heading to the dentist in

> an hour.

> Could you send it to me ASAP, bless you, Jill!!!

>

> Love Whole Bunches of One Day at a Time Mode, Carole

>

> New Article

>

>

> > I was given an article entitled:

> >

> > Oral Manifestations of Ehlers Danlos Syndrome published by a

> CanadianGroup in June of 2001, anyone who wants it, can have it,

> it's in Microsoft

> Word format.

> >

> > Jill

> >

> >

> >

> >

[Guest guest]

Hi , donna this is . Petra's mom. Petra's is quite pron to nose

bleeds, usually once she gets one she will have two

or three and they last awhile too but her ptt and aptt, Also platelets

showed slight abnormallity. I hope this works out okay for you because I

know how uncomfortable and messy they can be. Good luck with your fasting

and take care.

& Petra

New Article

> >

> >

> > > I was given an article entitled:

> > >

> > > Oral Manifestations of Ehlers Danlos Syndrome published by a

> > CanadianGroup in June of 2001, anyone who wants it, can have it,

> > it's in Microsoft

> > Word format.

> > >

> > > Jill

> > >

> > >

> > >

> > >

[Guest guest]

Re: Severe Nosebleeds and EDS???

Hi everyone,

I have been pretty quiet lately but I would like to get some feedback

about nosebeeds and EDS.

Donna - I had sudden nosebleeds as a youngster/teen but not that severe.

My dad had these type of episodes about 11 years ago when was small.

He would start bleeding and couldn't stop. After the 3rd or 4th time and

being put in the hospital, it was found out that he had fluctuating high

blood pressure. The only way they found this out was that his blood pressure

was taken quite often and the readings compared. He too had a clotting time

study done. Nothing was ever said about it, so I assume it was normal.

Now, I'm not saying this is what you have, but it might be worth checking to

just rule it out!

Bonnie

[Guest guest]

> I have been pretty quiet lately but I would like to get some feedback

> about nosebeeds and EDS.

I don't know anything about them being linked to EDS, but I have had

problems with them from time to time. Most often, I noticed that my

nosebleeds are related to weather and altitude. When I lived in Alaska, I

would get really bad nosebleeds in the winter time. Alaskan winters are

very dry, believe it or not.

I also get nosebleeds EVERY time I visit my grandmother in Reno because of

the altitude. It never fails.

-Barb

[Guest guest]

My oldest sister has EDS but won't get diagnosed because she's trying to

fight the last stage of Lyme's disease, which no treatment has yet

successfully combated. Anyway, she used to have nose bleeds at night.

My mom thought for years that she had been SPRAYING blood onto the curtains

while she was sleeping. She kept telling doctors but they said no she wasn't

and they'd checked her out and now at least she was fine.

One night my mom came into my sisters room as she was having a nose bleed in

her sleep and she saw my sister get up and crawl across her bed, dropping

blood all the way to the end of her bed where the window was. There she

proceeded to wipe her bloody nose with the curtain. : )

Wouldn't it be neat if we could find out that all our problems are caused by

doing something while we're sleeping and something minor is happening? Let's

all get camcorders to record what REALLY happens in the night. Maybe we're

all tormenting ourselves while we're sleeping, taking turns popping out the

different joints? Maybe if we stopped doing that we wouldn't have pain

anymore? Okay, I'll wake up in a minute...It's only 2:16pm and I'm still on

my first cup of joe.

Love y'all.....Janet : )

[Guest guest]

EDS does have a bleeding component which will not show up on routine bleeding

tests. Eg you might have the right number of platelets but their shape or

function can be impaired. It is more likely that you have problems with the

collagen receptors that help the platelets to bind as part of the clotting

process. You do not get nosebleeds from the weather that is a wives tale.

More than 2 nosebleeds a year is abnormal. Since many EDS patients are first

diagnosed via a bleeding problem by hematologists (see literature) it is

important to get worked up with this specialty especially since you bleed

heavily and long which is not normal. There are medications that you can take

to treat the bleed. Remember if you are bleeding this much from the nose what

will happen in a

trauma or surgery. Get checked out.

Woman's Advocate Great Lakes Hemophilia Association

EDS and 2 related bleeding disorders

At 09:59 AM 11/15/01 +0300, you wrote:

>

> Hi everyone,

> I have been pretty quiet lately but I would like to get some feedback

> about nosebeeds and EDS. I rememebr Jeff G. had some very bad bouts a

> few years ago, and others at that time talked about theirs, but up

> until now I have never expereinced them except for slight ones due to

> dry weather.

> What is the connection if any? Are Eders more prone to them or have

> them heavier? I have had 2 incidences in 48 hours, the first sent me to

> the hospital here as we could not stop it and i was hemmorraging large

> clots and it was very heavy. At the hospital they did blood pressure

> and platette count and I was within normal range in both. Two days

> later I had another one , but this time i didn't PANIC and used the

> procedure they told me of pinching my nose.still it took almost 45

> minutes for it to stop altough it wasn't as severe.

> The next day, iI went to a Nose Dr. and he sent for exams of my blood

> Pt and PTT and they came back within normal range too. He made me get a

> sinus cavity x-ray and that showed basically a sinus infection or

> chronic thickening of the mucosal walls. He has me on a week of

> antibiotics, decongestant nosedrops and an antihstamine to see if this

> helps, but he said it seemed to him to be more of a case of sudden

> hypertension.

> I normally have good blood pressure and I am on 100mg, of atenolol for

> heart rythmns and that keeps me cool..have any of you had these?

> I feel slightly nervous about them and am afraid of the " next attack "

> and i will be out or away from home or something.

> Ramadan is starting tomorrow and this means daytime fasting of even

> water. I hope it will have a good affect on this condition!!!!

>

> All your feedback on the subject would be most welcome as I feel a

> little alone here on this!!

> Thanks alot,

> Hus,\

> Donna

> HEDS

> Jordan

>

> ----- Mensaje Original -----

> De: and Carole

> Fecha: Miercoles, Noviembre 14, 2001 8:34 pm

> Asunto: Re: New Article

>

> > Jill,

> >

> > I would love to get this article, I am heading to the dentist in

> > an hour.

> > Could you send it to me ASAP, bless you, Jill!!!

> >

> > Love Whole Bunches of One Day at a Time Mode, Carole

> >

> > New Article

> >

> >

> > > I was given an article entitled:

> > >

> > > Oral Manifestations of Ehlers Danlos Syndrome published by a

> > CanadianGroup in June of 2001, anyone who wants it, can have it,

> > it's in Microsoft

> > Word format.

> > >

> > > Jill

> > >

> > >

> > >

> > >

[Guest guest]

Hello

I want to thank you for your input about nosebleeds.

You have enlightened me about what may be the causes for me bleeding

for so long. Thank God, I have not had another attack since the second

one, but I would be interested if you could give me the name of the

blood test to check out the the collagen receptors, or the shape of my

platelettes. I was even being monitored for high blood pressure, which

I do not have Thank Goodness and the doctor was unable to give me any

reason for the bleeding.All my liver functiins are working well too.

I will give him your information.

Thank you so much

You have been a bg help

Hugs,

Donna

HEDS

Jordan

----- Mensaje Original -----

De: Stace-Naughton

Fecha: Miercoles, Noviembre 21, 2001 5:56 pm

Asunto: Re: Severe Nosebleeds and EDS???

> EDS does have a bleeding component which will not show up on

> routine bleeding

> tests. Eg you might have the right number of platelets but their

> shape or

> function can be impaired. It is more likely that you have

> problems with the

> collagen receptors that help the platelets to bind as part of the

> clottingprocess. You do not get nosebleeds from the weather that

> is a wives tale.

> More than 2 nosebleeds a year is abnormal. Since many EDS

> patients are first

> diagnosed via a bleeding problem by hematologists (see literature)

> it is

> important to get worked up with this specialty especially since

> you bleed

> heavily and long which is not normal. There are medications that

> you can take

> to treat the bleed. Remember if you are bleeding this much from

> the nose what

> will happen in a

> trauma or surgery. Get checked out.

>

> Woman's Advocate Great Lakes Hemophilia Association

> EDS and 2 related bleeding disorders

>

>

>

>

> At 09:59 AM 11/15/01 +0300, you wrote:

> >

> > Hi everyone,

> > I have been pretty quiet lately but I would like to get some

> feedback> about nosebeeds and EDS. I rememebr Jeff G. had some

> very bad bouts a

> > few years ago, and others at that time talked about theirs, but

> up

> > until now I have never expereinced them except for slight ones

> due to

> > dry weather.

> > What is the connection if any? Are Eders more prone to them or

> have

> > them heavier? I have had 2 incidences in 48 hours, the first

> sent me to

> > the hospital here as we could not stop it and i was hemmorraging

> large

> > clots and it was very heavy. At the hospital they did blood

> pressure

> > and platette count and I was within normal range in both. Two

> days

> > later I had another one , but this time i didn't PANIC and used

> the

> > procedure they told me of pinching my nose.still it took almost

> 45

> > minutes for it to stop altough it wasn't as severe.

> > The next day, iI went to a Nose Dr. and he sent for exams of my

> blood

> > Pt and PTT and they came back within normal range too. He made

> me get a

> > sinus cavity x-ray and that showed basically a sinus infection

> or

> > chronic thickening of the mucosal walls. He has me on a week of

> > antibiotics, decongestant nosedrops and an antihstamine to see

> if this

> > helps, but he said it seemed to him to be more of a case of

> sudden

> > hypertension.

> > I normally have good blood pressure and I am on 100mg, of

> atenolol for

> > heart rythmns and that keeps me cool..have any of you had these?

> > I feel slightly nervous about them and am afraid of the " next

> attack "

> > and i will be out or away from home or something.

> > Ramadan is starting tomorrow and this means daytime fasting of

> even

> > water. I hope it will have a good affect on this condition!!!!

> >

> > All your feedback on the subject would be most welcome as I feel

> a

> > little alone here on this!!

> > Thanks alot,

> > Hus,\

> > Donna

> > HEDS

> > Jordan

> >

> > ----- Mensaje Original -----

> > De: and Carole

> > Fecha: Miercoles, Noviembre 14, 2001 8:34 pm

> > Asunto: Re: New Article

> >

> > > Jill,

> > >

> > > I would love to get this article, I am heading to the dentist

> in

> > > an hour.

> > > Could you send it to me ASAP, bless you, Jill!!!

> > >

> > > Love Whole Bunches of One Day at a Time Mode, Carole

> > >

> > > New Article

> > >

> > >

> > > > I was given an article entitled:

> > > >

> > > > Oral Manifestations of Ehlers Danlos Syndrome published by a

> > > CanadianGroup in June of 2001, anyone who wants it, can have

> it,

> > > it's in Microsoft

> > > Word format.

> > > >

> > > > Jill

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hello

I want to thank you for your input about nosebleeds.

You have enlightened me about what may be the causes for me bleeding

for so long. Thank God, I have not had another attack since the second

one, but I would be interested if you could give me the name of the

blood test to check out the the collagen receptors, or the shape of my

platelettes. I was even being monitored for high blood pressure, which

I do not have Thank Goodness and the doctor was unable to give me any

reason for the bleeding.All my liver functiins are working well too.

I will give him your information.

Thank you so much

You have been a bg help

Hugs,

Donna

HEDS

Jordan

----- Mensaje Original -----

De: Stace-Naughton

Fecha: Miercoles, Noviembre 21, 2001 5:56 pm

Asunto: Re: Severe Nosebleeds and EDS???

> EDS does have a bleeding component which will not show up on

> routine bleeding

> tests. Eg you might have the right number of platelets but their

> shape or

> function can be impaired. It is more likely that you have

> problems with the

> collagen receptors that help the platelets to bind as part of the

> clottingprocess. You do not get nosebleeds from the weather that

> is a wives tale.

> More than 2 nosebleeds a year is abnormal. Since many EDS

> patients are first

> diagnosed via a bleeding problem by hematologists (see literature)

> it is

> important to get worked up with this specialty especially since

> you bleed

> heavily and long which is not normal. There are medications that

> you can take

> to treat the bleed. Remember if you are bleeding this much from

> the nose what

> will happen in a

> trauma or surgery. Get checked out.

>

> Woman's Advocate Great Lakes Hemophilia Association

> EDS and 2 related bleeding disorders

>

>

>

>

> At 09:59 AM 11/15/01 +0300, you wrote:

> >

> > Hi everyone,

> > I have been pretty quiet lately but I would like to get some

> feedback> about nosebeeds and EDS. I rememebr Jeff G. had some

> very bad bouts a

> > few years ago, and others at that time talked about theirs, but

> up

> > until now I have never expereinced them except for slight ones

> due to

> > dry weather.

> > What is the connection if any? Are Eders more prone to them or

> have

> > them heavier? I have had 2 incidences in 48 hours, the first

> sent me to

> > the hospital here as we could not stop it and i was hemmorraging

> large

> > clots and it was very heavy. At the hospital they did blood

> pressure

> > and platette count and I was within normal range in both. Two

> days

> > later I had another one , but this time i didn't PANIC and used

> the

> > procedure they told me of pinching my nose.still it took almost

> 45

> > minutes for it to stop altough it wasn't as severe.

> > The next day, iI went to a Nose Dr. and he sent for exams of my

> blood

> > Pt and PTT and they came back within normal range too. He made

> me get a

> > sinus cavity x-ray and that showed basically a sinus infection

> or

> > chronic thickening of the mucosal walls. He has me on a week of

> > antibiotics, decongestant nosedrops and an antihstamine to see

> if this

> > helps, but he said it seemed to him to be more of a case of

> sudden

> > hypertension.

> > I normally have good blood pressure and I am on 100mg, of

> atenolol for

> > heart rythmns and that keeps me cool..have any of you had these?

> > I feel slightly nervous about them and am afraid of the " next

> attack "

> > and i will be out or away from home or something.

> > Ramadan is starting tomorrow and this means daytime fasting of

> even

> > water. I hope it will have a good affect on this condition!!!!

> >

> > All your feedback on the subject would be most welcome as I feel

> a

> > little alone here on this!!

> > Thanks alot,

> > Hus,\

> > Donna

> > HEDS

> > Jordan

> >

> > ----- Mensaje Original -----

> > De: and Carole

> > Fecha: Miercoles, Noviembre 14, 2001 8:34 pm

> > Asunto: Re: New Article

> >

> > > Jill,

> > >

> > > I would love to get this article, I am heading to the dentist

> in

> > > an hour.

> > > Could you send it to me ASAP, bless you, Jill!!!

> > >

> > > Love Whole Bunches of One Day at a Time Mode, Carole

> > >

> > > New Article

> > >

> > >

> > > > I was given an article entitled:

> > > >

> > > > Oral Manifestations of Ehlers Danlos Syndrome published by a

> > > CanadianGroup in June of 2001, anyone who wants it, can have

> it,

> > > it's in Microsoft

> > > Word format.

> > > >

> > > > Jill

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I am not sure where you are so you can start by contacting the Great Lakes

Hemophilia Foundation at 1-. The article outlining this is " Low

Platelet a2b1 levels in Type I von Willebrand Disease Correleate with Impaired

Platelet Function in High SHear Stress System " Blood Vol 93 No 11 June 1 1999

pp 3578-3582 by Di Paola. This is a very technical article but there are

many articles that are out there linking EDS with the bleeding part of it's

syndrome. A knowledgeable hematologist with access to a hemophilia treatment

center lab (this is the key) can run the appropriate tests.

At 03:06 PM 11/22/01 +0300, you wrote:

>

> Hello

> I want to thank you for your input about nosebleeds.

> You have enlightened me about what may be the causes for me bleeding

> for so long. Thank God, I have not had another attack since the second

> one, but I would be interested if you could give me the name of the

> blood test to check out the the collagen receptors, or the shape of my

> platelettes. I was even being monitored for high blood pressure, which

> I do not have Thank Goodness and the doctor was unable to give me any

> reason for the bleeding.All my liver functiins are working well too.

> I will give him your information.

> Thank you so much

> You have been a bg help

> Hugs,

> Donna

> HEDS

> Jordan

>

> ----- Mensaje Original -----

> De: Stace-Naughton

> Fecha: Miercoles, Noviembre 21, 2001 5:56 pm

> Asunto: Re: Severe Nosebleeds and EDS???

>

> > EDS does have a bleeding component which will not show up on

> > routine bleeding

> > tests. Eg you might have the right number of platelets but their

> > shape or

> > function can be impaired. It is more likely that you have

> > problems with the

> > collagen receptors that help the platelets to bind as part of the

> > clottingprocess. You do not get nosebleeds from the weather that

> > is a wives tale.

> > More than 2 nosebleeds a year is abnormal. Since many EDS

> > patients are first

> > diagnosed via a bleeding problem by hematologists (see literature)

> > it is

> > important to get worked up with this specialty especially since

> > you bleed

> > heavily and long which is not normal. There are medications that

> > you can take

> > to treat the bleed. Remember if you are bleeding this much from

> > the nose what

> > will happen in a

> > trauma or surgery. Get checked out.

> >

> > Woman's Advocate Great Lakes Hemophilia Association

> > EDS and 2 related bleeding disorders

> >

> >

> >

> >

> > At 09:59 AM 11/15/01 +0300, you wrote:

> > >

> > > Hi everyone,

> > > I have been pretty quiet lately but I would like to get some

> > feedback> about nosebeeds and EDS. I rememebr Jeff G. had some

> > very bad bouts a

> > > few years ago, and others at that time talked about theirs, but

> > up

> > > until now I have never expereinced them except for slight ones

> > due to

> > > dry weather.

> > > What is the connection if any? Are Eders more prone to them or

> > have

> > > them heavier? I have had 2 incidences in 48 hours, the first

> > sent me to

> > > the hospital here as we could not stop it and i was hemmorraging

> > large

> > > clots and it was very heavy. At the hospital they did blood

> > pressure

> > > and platette count and I was within normal range in both. Two

> > days

> > > later I had another one , but this time i didn't PANIC and used

> > the

> > > procedure they told me of pinching my nose.still it took almost

> > 45

> > > minutes for it to stop altough it wasn't as severe.

> > > The next day, iI went to a Nose Dr. and he sent for exams of my

> > blood

> > > Pt and PTT and they came back within normal range too. He made

> > me get a

> > > sinus cavity x-ray and that showed basically a sinus infection

> > or

> > > chronic thickening of the mucosal walls. He has me on a week of

> > > antibiotics, decongestant nosedrops and an antihstamine to see

> > if this

> > > helps, but he said it seemed to him to be more of a case of

> > sudden

> > > hypertension.

> > > I normally have good blood pressure and I am on 100mg, of

> > atenolol for

> > > heart rythmns and that keeps me cool..have any of you had these?

> > > I feel slightly nervous about them and am afraid of the " next

> > attack "

> > > and i will be out or away from home or something.

> > > Ramadan is starting tomorrow and this means daytime fasting of

> > even

> > > water. I hope it will have a good affect on this condition!!!!

> > >

> > > All your feedback on the subject would be most welcome as I feel

> > a

> > > little alone here on this!!

> > > Thanks alot,

> > > Hus,\

> > > Donna

> > > HEDS

> > > Jordan

> > >

> > > ----- Mensaje Original -----

> > > De: and Carole

> > > Fecha: Miercoles, Noviembre 14, 2001 8:34 pm

> > > Asunto: Re: New Article

> > >

> > > > Jill,

> > > >

> > > > I would love to get this article, I am heading to the dentist

> > in

> > > > an hour.

> > > > Could you send it to me ASAP, bless you, Jill!!!

> > > >

> > > > Love Whole Bunches of One Day at a Time Mode, Carole

> > > >

> > > > New Article

> > > >

> > > >

> > > > > I was given an article entitled:

> > > > >

> > > > > Oral Manifestations of Ehlers Danlos Syndrome published by a

> > > > CanadianGroup in June of 2001, anyone who wants it, can have

> > it,

> > > > it's in Microsoft

> > > > Word format.

> > > > >

> > > > > Jill

> > > > >

> > > > >

> > > > >

> > > > >