Does this happen to any one?

[Guest guest]

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere..it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

Actually, I had not associated my lack of balance with IPF, but thinking about it after reading your email, I also have had problems occasionally with balance (not really dizzy as in unable to focus like after spinning around, but just off, like your steps are unsteady a bit) I have joked around with the kids that the walls move just a little so as to throw me off. I was thinking that it is due to my lack of sleep with the meds and stress, or sometimes my diabetes. But maybe it is the IPF, how do we find out? Without sounding like hypochondriacs that is!!Later,IPF/NSIP 08 NCSubject: Does this happen to any one?To: Breathe-support Date: Tuesday, November 24, 2009, 9:27 PM

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

Yes - my lack of balance is not always associated with dizziness...yes, like your steps are unsteady.Joyce R AZ birds

Actually, I had not associated my lack of balance with IPF, but thinking about it after reading your email, I also have had problems occasionally with balance (not really dizzy as in unable to focus like after spinning around, but just off, like your steps are unsteady a bit) I have joked around with the kids that the walls move just a little so as to throw me off. I was thinking that it is due to my lack of sleep with the meds and stress, or sometimes my diabetes. But maybe it is the IPF, how do we find out? Without sounding like hypochondriacs that is!!

Later,

IPF/NSIP 08 NC

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Does this happen to any one?To: Breathe-support Date: Tuesday, November 24, 2009, 9:27 PM

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

I get both the swallowing problem & the dizziness. I can still breathe so far

during the swallowing problem, thank goodness, & the dizziness is still slight

but definitely noticeable.

Can somebody who goes to a Center of Excellence please check with their

pulmodocs about this? I keep hearing about both these problems in this group, so

it seems like it must be connected to PF somehow.

Sounds like something to put in the book since so many of us have similar

problems.

Cees, S Calif

IPF/UIP 10/08

>

> I will be eating anything and suddenly I can't swallow...and I try to

> swallow but can't do it and I can't get air down either...feel panicked by it

> and try drinking something but sometimes it's helpful but others not so much.

> I suddenly can't swallow! Then it clears up and I swallow and begin to

> breath again. Doesn't happen often but when it happens it is scary.

>

> Also is losing balance a part of PF? I looked thru the messages about

> this but rapidly...I have a problem with balance...sometime I am dizzy and

> other times not. I almost fall inside or outside or in a

store..anywhere..it's

> strange...mostly I grab onto things but have come very close to hitting the

> ground. Joyce R AZ birds

>

[Guest guest]

This is a very interesting discussion. I've had issues with balance and coordination my entire life. I stumble more easily than the average person and if I'm walking in a straight line and not paying attention to what I'm doing, I drift to the left.

Since my diagnosis I will occasionally have issues with dizziness but not often and not severe.

For me alot of this I think is attributable to the dermatomyositis which causes muscle weakness. It just makes me wonder how long I actually had this.

These are the things that make you go hmmmmmmm.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, November 25, 2009 10:11:01 AMSubject: Re: Does this happen to any one?

Yes - my lack of balance is not always associated with dizziness... yes, like your steps are unsteady.Joyce R AZ birds

In a message dated 11/25/2009 12:04:44 A.M. US Mountain Standard Tim, froggies3us@ yahoo.com writes:

Actually, I had not associated my lack of balance with IPF, but thinking about it after reading your email, I also have had problems occasionally with balance (not really dizzy as in unable to focus like after spinning around, but just off, like your steps are unsteady a bit) I have joked around with the kids that the walls move just a little so as to throw me off. I was thinking that it is due to my lack of sleep with the meds and stress, or sometimes my diabetes. But maybe it is the IPF, how do we find out? Without sounding like hypochondriacs that is!!

Later,

IPF/NSIP 08 NC

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Does this happen to any one?To: Breathe-support@ yahoogroups. comDate: Tuesday, November 24, 2009, 9:27 PM

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

the same with me, particuly since dignosis of PF with the on-slot of medication.

ken o.

To: Breathe-Support Sent: Wed, November 25, 2009 7:25:56 AMSubject: Re: Does this happen to any one?

This is a very interesting discussion. I've had issues with balance and coordination my entire life. I stumble more easily than the average person and if I'm walking in a straight line and not paying attention to what I'm doing, I drift to the left.

Since my diagnosis I will occasionally have issues with dizziness but not often and not severe.

For me alot of this I think is attributable to the dermatomyositis which causes muscle weakness. It just makes me wonder how long I actually had this.

These are the things that make you go hmmmmmmm.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "BlueLiddy (AT) aol (DOT) com" <BlueLiddy (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 25, 2009 10:11:01 AMSubject: Re: Does this happen to any one?

Yes - my lack of balance is not always associated with dizziness... yes, like your steps are unsteady.Joyce R AZ birds

In a message dated 11/25/2009 12:04:44 A.M. US Mountain Standard Tim, froggies3us@ yahoo.com writes:

Actually, I had not associated my lack of balance with IPF, but thinking about it after reading your email, I also have had problems occasionally with balance (not really dizzy as in unable to focus like after spinning around, but just off, like your steps are unsteady a bit) I have joked around with the kids that the walls move just a little so as to throw me off. I was thinking that it is due to my lack of sleep with the meds and stress, or sometimes my diabetes. But maybe it is the IPF, how do we find out? Without sounding like hypochondriacs that is!!

Later,

IPF/NSIP 08 NC

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Does this happen to any one?To: Breathe-support@ yahoogroups. comDate: Tuesday, November 24, 2009, 9:27 PM

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

Beth

It does make you wonder if some of these things will one day found to be

indicators that we're a person more susceptible at even a young age.

While my major symptoms, the long ugly list, are generally all within

the past four years or so, there are elements that one wonders about

that are much longer. For instance, my balance was never good and I had

restless limbs as a child but it hadn't been invented. They worried

about Polio and other things but had no answers. Now I have it with

Peripheral Neuropathy. I also was told when in college that my lungs

looked like those of a 40 year old smoker. That was attributed to my

allergies and all the bouts with them I'd had and subsequent infections.

But, while I was told I was allergic to cigarette smoke, never did

anyone attribute the condition of my lungs to the smoking of my parents

and my father's secretary. Certainly not in the late 60's and in the

tobacco capital of NC.

As to dizziness, I get that occasionally. But the strangest time is

sometimes right after I lay down in bed the entire room will spin and

I'll feel like I'm on some wild drug trip or something. It's not for

long and I just lay there until its over.

> >

> >

> >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> >>Subject: Does this happen to any one?

> >>To: Breathe-support@ yahoogroups. com

> >>Date: Tuesday, November 24, 2009, 9:27 PM

> >>

> >>

> >>Â

> >>I will be eating anything and suddenly I can't swallow...and I try

to swallow but can't do it and I can't get air down either...feel

panicked by it and try drinking something but sometimes it's helpful but

others not so much. I suddenly can't swallow! Then it clears up and I

swallow and begin to breath again. Doesn't happen often but when it

happens it is scary.

> >>

> >>Also is losing balance a part of PF? I looked thru the messages

about this but rapidly...I have a problem with balance...sometime I am

dizzy and other times not. I almost fall inside or outside or in a

store..anywhere. .it's strange...mostly I grab onto things but have come

very close to hitting the ground. Joyce R AZ birds

> >

>

[Guest guest]

I, too, have swallowing issues as well as some dizziness.

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>Subject: Does this happen to any one?To: Breathe-support@ yahoogroups. comDate: Tuesday, November 24, 2009, 9:27 PM

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

Bruce,

That room spinning thing when you lie down? That happens to me too...it's very brief, like less than a minute but it happens pretty much every time I lie down. That's new since my diagnosis with pf. Very very weird.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, November 25, 2009 10:44:27 AMSubject: Re: Does this happen to any one?

BethIt does make you wonder if some of these things will one day found to beindicators that we're a person more susceptible at even a young age.While my major symptoms, the long ugly list, are generally all withinthe past four years or so, there are elements that one wonders aboutthat are much longer. For instance, my balance was never good and I hadrestless limbs as a child but it hadn't been invented. They worriedabout Polio and other things but had no answers. Now I have it withPeripheral Neuropathy. I also was told when in college that my lungslooked like those of a 40 year old smoker. That was attributed to myallergies and all the bouts with them I'd had and subsequent infections.But, while I was told I was allergic to cigarette smoke, never didanyone attribute the condition of my lungs to the smoking of my parentsand my father's secretary. Certainly not in the late 60's and in

thetobacco capital of NC.As to dizziness, I get that occasionally. But the strangest time issometimes right after I lay down in bed the entire room will spin andI'll feel like I'm on some wild drug trip or something. It's not forlong and I just lay there until its over.>

>> >> >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>> >>Subject: Does this happen to any one?> >>To: Breathe-support@ yahoogroups. com> >>Date: Tuesday, November 24, 2009, 9:27 PM> >>> >>> >>Â> >>I will be eating anything and suddenly I can't swallow...and I tryto swallow but can't do it and I can't get air down either...feelpanicked by it and try drinking something but sometimes it's helpful butothers not so much. I suddenly can't swallow! Then it clears up and Iswallow and begin to breath again. Doesn't happen often but when ithappens it is scary.> >>> >>Also is losing balance a part of PF? I looked thru the messagesabout this but rapidly...I have a problem with balance...sometime I amdizzy and other times not. I almost fall inside or outside or in

astore..anywhere. .it's strange...mostly I grab onto things but have comevery close to hitting the ground. Joyce R AZ birds> >>

[Guest guest]

Beth

Well, i know immediately upon lying down our oxygen levels drop. But it

seems to be something beyond that. I have no idea what it is. Don't

think I've ever even mentioned it to a doctor. But its like

" WHOAAAAAAAAAAAAAAAAAAA " . Yes, its not long and fine when I come out of

it. But it sure feels strange. Just glad it happens when I'm laying down

because no way I could stand when thats going on.

> > >

> > >

> > >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> > >>Subject: Does this happen to any one?

> > >>To: Breathe-support@ yahoogroups. com

> > >>Date: Tuesday, November 24, 2009, 9:27 PM

> > >>

> > >>

> > >>Â

> > >>I will be eating anything and suddenly I can't swallow...and I try

> to swallow but can't do it and I can't get air down either...feel

> panicked by it and try drinking something but sometimes it's helpful

but

> others not so much. I suddenly can't swallow! Then it clears up and I

> swallow and begin to breath again. Doesn't happen often but when it

> happens it is scary.

> > >>

> > >>Also is losing balance a part of PF? I looked thru the

messages

> about this but rapidly...I have a problem with balance...sometime I am

> dizzy and other times not. I almost fall inside or outside or in a

> store..anywhere. .it's strange...mostly I grab onto things but have

come

> very close to hitting the ground. Joyce R AZ birds

> > >

> >

>

[Guest guest]

Bruce and Beth...Take thee to

a Vertigo PT!!!!

That's vertigo guys...positional

it's called Benign Vestibular Vertigo!!!

Yes..even if it just hits when you lay down to sleep!!!

Get it checked out please!!!  I'm making myself the Vertigo Police

here!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Beth wrote:

 

Bruce,

That room spinning thing when you lie down? That happens to me

too...it's very brief, like less than a minute but it happens pretty

much every time I lie down. That's new since my diagnosis with pf. 

Very very weird.

 

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

 

 

From:

Bruce <brucemoreland (AT) gmail (DOT) com>

To: Breathe-Support

Sent: Wed, November

25, 2009 10:44:27 AM

Subject:

Re: Does this happen to any one?

 

Beth

It does make you wonder if some of these things will one day found to be

indicators that we're a person more susceptible at even a young age.

While my major symptoms, the long ugly list, are generally all within

the past four years or so, there are elements that one wonders about

that are much longer. For instance, my balance was never good and I had

restless limbs as a child but it hadn't been invented. They worried

about Polio and other things but had no answers. Now I have it with

Peripheral Neuropathy. I also was told when in college that my lungs

looked like those of a 40 year old smoker. That was attributed to my

allergies and all the bouts with them I'd had and subsequent infections.

But, while I was told I was allergic to cigarette smoke, never did

anyone attribute the condition of my lungs to the smoking of my parents

and my father's secretary. Certainly not in the late 60's and in the

tobacco capital of NC.

As to dizziness, I get that occasionally. But the strangest time is

sometimes right after I lay down in bed the entire room will spin and

I'll feel like I'm on some wild drug trip or something. It's not for

long and I just lay there until its over.

> >

> >

> >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> >>Subject: Does this happen to any one?

> >>To: Breathe-support@ yahoogroups. com

> >>Date: Tuesday, November 24, 2009, 9:27 PM

> >>

> >>

> >>Â

> >>I will be eating anything and suddenly I can't

swallow...and I try

to swallow but can't do it and I can't get air down either...feel

panicked by it and try drinking something but sometimes it's helpful but

others not so much. I suddenly can't swallow! Then it clears up and I

swallow and begin to breath again. Doesn't happen often but when it

happens it is scary.

> >>

> >>Also is losing balance a part of PF? I looked thru the

messages

about this but rapidly...I have a problem with balance...sometime I am

dizzy and other times not. I almost fall inside or outside or in a

store..anywhere. .it's strange...mostly I grab onto things but have come

very close to hitting the ground. Joyce R AZ birds

> >

>

[Guest guest]

Ok.....putting Vertigo PT on my list although would have to get referral

from someone as in Texas all physical therapy requires a doctor's

referral. So, now.....let's see....got to put my doctor's plans in order

here and prioritize:

1-Rheumatologist (Dec)

2-Pulmonologist (Dec)

3-Primary (past due but not till after flu season unless emergency)

4-Otolaryngologist (Dec)

5-Psychiatrist (Dec)

6-Counselor-regularly

7-Neurologist (Dec-Jan)

8-Nephrologist (Jan)

9-Duke University - Extended (Jan-Pulmonologist, Rheumatologist and

more)

10-Gastroenterologist (not until June)

11-Opthalmologist (not until June)

12-Pulmonary Hypertension Specialist (Mar)

13-Dermatologist (Jan)

14-Sinus specialist (need badly)

15-Podiatrist (put off too long..probably Plantar Faciitis)

16-Oncologist (hate to do more CT's before Duke so may put off until

after)

And now thanks to the Vertigo Police:

17-Vertigo PT (or guess I have to discuss with one of these doctors

first and get referral)

Omg, ....guess I really need to discuss with my ENT. I think mine

is likely from my ear surgeries for cholesteotoma as I had two

Tympanoplasty's with Mastoidectomies. I'm overdue for my annual checkup

anyway. So, I'll go and make sure I bring it up. Thanks for the

information. I've now read a lot about it as a result of your prodding.

> > > >

> > > >

> > > >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> > > >>Subject: Does this happen to any one?

> > > >>To: Breathe-support@ yahoogroups. com

> > > >>Date: Tuesday, November 24, 2009, 9:27 PM

> > > >>

> > > >>

> > > >>Â

> > > >>I will be eating anything and suddenly I can't swallow...and I

try

> > to swallow but can't do it and I can't get air down either...feel

> > panicked by it and try drinking something but sometimes it's helpful

but

> > others not so much. I suddenly can't swallow! Then it clears up and

I

> > swallow and begin to breath again. Doesn't happen often but when it

> > happens it is scary.

> > > >>

> > > >>Also is losing balance a part of PF? I looked thru the

messages

> > about this but rapidly...I have a problem with balance...sometime I

am

> > dizzy and other times not. I almost fall inside or outside or in a

> > store..anywhere. .it's strange...mostly I grab onto things but have

come

> > very close to hitting the ground. Joyce R AZ birds

> > > >

> > >

> >

> >

>

[Guest guest]

It happens to me frequently Joyce, sometimes I feel I will die like only.The

choking is horrific whemn you cannot swallow nor can you breathe the windpipe

seems to close completely , slowly sipping water helps but it has to go by

itself, there is noother way.I think we have to be very careful while eating and

drinking.alert and consciuos of the process of eating..

Geeta

>

> I will be eating anything and suddenly I can't swallow...and I try to

> swallow but can't do it and I can't get air down either...feel panicked by it

> and try drinking something but sometimes it's helpful but others not so much.

> I suddenly can't swallow! Then it clears up and I swallow and begin to

> breath again. Doesn't happen often but when it happens it is scary.

>

> Also is losing balance a part of PF? I looked thru the messages about

> this but rapidly...I have a problem with balance...sometime I am dizzy and

> other times not. I almost fall inside or outside or in a

store..anywhere..it's

> strange...mostly I grab onto things but have come very close to hitting the

> ground. Joyce R AZ birds

>

[Guest guest]

This is an interesting topic. My husband used to comment on my " drifting " as I

used to " bump " into him even before we were married - note that was 34 years ago

(and I wasn't trying,... LOL). I have always had a minor balance problem but it

got better when I started the water aerobics. We did a lot of balance things,

which is very difficult in water. It is easier to do the exercises because you

" won't fall down " , but you really find muscles you didn't know you had. I have

had minor dizziness, but it happens even when I am sitting. Maybe 3 times a

month. Nothing that I am worried about, but I never had dizziness of any kind

before I was diagnosed (with ILD) in 2006.

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

> >

> >

> >>From: BlueLiddy (AT) aol (DOT) com <BlueLiddy (AT) aol (DOT) com>

> >>Subject: Does this happen to any one?

> >>To: Breathe-support@ yahoogroups. com

> >>Date: Tuesday, November 24, 2009, 9:27 PM

> >>

> >>

> >> 

> >>I will be eating anything and suddenly I can't swallow...and I try to

swallow but can't do it and I can't get air down either...feel panicked by it

and try drinking something but sometimes it's helpful but others not so much. I

suddenly can't swallow! Then it clears up and I swallow and begin to breath

again. Doesn't happen often but when it happens it is scary.

> >>

> >>Also is losing balance a part of PF?  I looked thru the messages about this

but rapidly...I have a problem with balance...sometime I am dizzy and other

times not. I almost fall inside or outside or in a store..anywhere. .it's

strange...mostly I grab onto things but have come very close to hitting the

ground. Joyce R AZ birds

> >

>

[Guest guest]

Gita/Joyce

While there are many reasons for the choking and swallowing issues, mine

is in the form of a tight upper esophagus sphincter or a condition

sometimes referred to as Globus. There are many causes and a few

different potential treatments. However, the one I was given was a very

small dosage of Valium (2 mg) with meals. At the time it was prescribed

I was having problems with every meal and couldn't stand upright

afterwards without coughing up. I was semi bed-ridden as absurd as it

sounds with something so seemingly small. It helped immediately as, for

some reason, it will immediately relax those muscles. Now, I only take

it on an as needed basis and seldom find myself needing it. But, if I'm

eating a meal and experiencing the problem, I can take it and it does

work. I thought this was the craziest prescription I'd ever gotten and

no way it would work, but I was so happy to be wrong and find it

effective.

> >

> > I will be eating anything and suddenly I can't swallow...and I try

to

> > swallow but can't do it and I can't get air down either...feel

panicked by it

> > and try drinking something but sometimes it's helpful but others not

so much.

> > I suddenly can't swallow! Then it clears up and I swallow and begin

to

> > breath again. Doesn't happen often but when it happens it is scary.

> >

> > Also is losing balance a part of PF? I looked thru the messages

about

> > this but rapidly...I have a problem with balance...sometime I am

dizzy and

> > other times not. I almost fall inside or outside or in a

store..anywhere..it's

> > strange...mostly I grab onto things but have come very close to

hitting the

> > ground. Joyce R AZ birds

> >

>

[Guest guest]

Bruce, Thanks for being careful.

It may be because of your ear related surgeries,

but the Uh Oh feeling is bad no matter the cause.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Bruce wrote:

Ok.....putting Vertigo PT on my list although would have to get referral

from someone as in Texas all physical therapy requires a doctor's

referral. So, now.....let's see....got to put my doctor's plans in

order

here and prioritize:

1-Rheumatologist (Dec)

2-Pulmonologist (Dec)

3-Primary (past due but not till after flu season unless emergency)

4-Otolaryngologist (Dec)

5-Psychiatrist (Dec)

6-Counselor-regularly

7-Neurologist (Dec-Jan)

8-Nephrologist (Jan)

9-Duke University - Extended (Jan-Pulmonologist, Rheumatologist and

more)

10-Gastroenterologist (not until June)

11-Opthalmologist (not until June)

12-Pulmonary Hypertension Specialist (Mar)

13-Dermatologist (Jan)

14-Sinus specialist (need badly)

15-Podiatrist (put off too long..probably Plantar Faciitis)

16-Oncologist (hate to do more CT's before Duke so may put off until

after)

And now thanks to the Vertigo Police:

17-Vertigo PT (or guess I have to discuss with one of these doctors

first and get referral)

Omg, ....guess I really need to discuss with my ENT. I think mine

is likely from my ear surgeries for cholesteotoma as I had two

Tympanoplasty's with Mastoidectomies. I'm overdue for my annual

checkup

anyway. So, I'll go and make sure I bring it up. Thanks for the

information. I've now read a lot about it as a result of your prodding.

> > > >

> > > >

> > > >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> > > >>Subject: Does this happen to

any one?

> > > >>To: Breathe-support@ yahoogroups. com

> > > >>Date: Tuesday, November 24, 2009, 9:27 PM

> > > >>

> > > >>

> > > >>Â

> > > >>I will be eating anything and suddenly I can't

swallow...and I

try

> > to swallow but can't do it and I can't get air down

either...feel

> > panicked by it and try drinking something but sometimes it's

helpful

but

> > others not so much. I suddenly can't swallow! Then it clears

up and

I

> > swallow and begin to breath again. Doesn't happen often but

when it

> > happens it is scary.

> > > >>

> > > >>Also is losing balance a part of PF? I looked

thru the

messages

> > about this but rapidly...I have a problem with

balance...sometime I

am

> > dizzy and other times not. I almost fall inside or outside or

in a

> > store..anywhere. .it's strange...mostly I grab onto things

but have

come

> > very close to hitting the ground. Joyce R AZ birds

> > > >

> > >

> >

> >

>

[Guest guest]

Joyce Rudy, I don't think that

balance issues come with PF...the lose of balance could come along with

age.

..even though I hate that excuse! As we age the cilia (sp) in the inner

ear get crystallized and break off and sometimes get out

into other ear canals and that's what causes the vertigo. The exercise

and maneuver that is used actually gets them back into

the inner ear where they belong.

Believe me real vertigo just doesn't go away on its own!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

BlueLiddy@... wrote:

I will be eating anything and suddenly I can't swallow...and I

try to swallow but can't do it and I can't get air down either...feel

panicked by it and try drinking something but sometimes it's helpful

but others not so much. I suddenly can't swallow! Then it clears up and

I swallow and begin to breath again. Doesn't happen often but when it

happens it is scary.

Also is losing balance a part of PF? I looked thru the messages

about this but rapidly...I have a problem with balance...sometime I am

dizzy and other times not. I almost fall inside or outside or in a

store..anywhere..it's strange...mostly I grab onto things but have

come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

I have so many different oddball things, they just have to stand in

line. So something like that I hadn't really even thought about. I know

if it was like yours I would have. It is something I do need to bring

up. I try to keep a list and make sure everything is covered at sometime

with someone but didn't have that one on the list.

> > > > > >

> > > > > >

> > > > > >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>

> > > > > >>Subject: Does this happen to any one?

> > > > > >>To: Breathe-support@ yahoogroups. com

> > > > > >>Date: Tuesday, November 24, 2009, 9:27 PM

> > > > > >>

> > > > > >>

> > > > > >>Ã,

> > > > > >>I will be eating anything and suddenly I can't swallow...and

I

> > try

> > > > to swallow but can't do it and I can't get air down

either...feel

> > > > panicked by it and try drinking something but sometimes it's

helpful

> > but

> > > > others not so much. I suddenly can't swallow! Then it clears up

and

> > I

> > > > swallow and begin to breath again. Doesn't happen often but when

it

> > > > happens it is scary.

> > > > > >>

> > > > > >>Also is losing balance a part of PF?Ã, I looked thru the

> > messages

> > > > about this but rapidly...I have a problem with

balance...sometime I

> > am

> > > > dizzy and other times not. I almost fall inside or outside or in

a

> > > > store..anywhere. .it's strange...mostly I grab onto things but

have

> > come

> > > > very close to hitting the ground. Joyce R AZ birds

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

,

Thanks...I think I may just do that.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, November 25, 2009 11:33:27 AMSubject: Re: Re: Does this happen to any one?

Bruce and Beth...Take thee to a Vertigo PT!!!!That's vertigo guys...positionalit's called Benign Vestibular Vertigo!!!Yes..even if it just hits when you lay down to sleep!!!Get it checked out please!!! I'm making myself the Vertigo Police here!!!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Beth wrote:

Bruce,

That room spinning thing when you lie down? That happens to me too...it's very brief, like less than a minute but it happens pretty much every time I lie down. That's new since my diagnosis with pf. Very very weird.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 25, 2009 10:44:27 AMSubject: Re: Does this happen to any one?

BethIt does make you wonder if some of these things will one day found to beindicators that we're a person more susceptible at even a young age.While my major symptoms, the long ugly list, are generally all withinthe past four years or so, there are elements that one wonders aboutthat are much longer. For instance, my balance was never good and I hadrestless limbs as a child but it hadn't been invented. They worriedabout Polio and other things but had no answers. Now I have it withPeripheral Neuropathy. I also was told when in college that my lungslooked like those of a 40 year old smoker. That was attributed to myallergies and all the bouts with them I'd had and subsequent infections.But, while I was told I was allergic to cigarette smoke, never didanyone attribute the condition of my lungs to the smoking of my parentsand my father's secretary. Certainly not in the late 60's and in

thetobacco capital of NC.As to dizziness, I get that occasionally. But the strangest time issometimes right after I lay down in bed the entire room will spin andI'll feel like I'm on some wild drug trip or something. It's not forlong and I just lay there until its over.> >> >> >>From: BlueLiddy (AT) aol (DOT) com BlueLiddy (AT) aol (DOT) com>> >>Subject: Does this happen to any one?> >>To: Breathe-support@ yahoogroups. com> >>Date: Tuesday, November 24, 2009, 9:27 PM> >>> >>> >>Â> >>I will be eating anything and suddenly I can't swallow...and I tryto swallow but can't do it and I can't get air down either...feelpanicked by it and try drinking something but sometimes it's helpful butothers not so much. I suddenly can't swallow! Then it clears up and Iswallow and begin to breath again. Doesn't happen often but when ithappens it is

scary.> >>> >>Also is losing balance a part of PF? I looked thru the messagesabout this but rapidly...I have a problem with balance...sometime I amdizzy and other times not. I almost fall inside or outside or in astore..anywhere. .it's strange...mostly I grab onto things but have comevery close to hitting the ground. Joyce R AZ birds> >>

[Guest guest]

linda, i am 36, and i do have some vertigo problems! sometimes I have to stay steady for a minute or two so i can recover my balance.

In my kitchen, the fridge is right in front of the stove, sometimes when i am in front of the stove and I need something from the fridge i turn around and i loose my balanace, i have to stay steady for a while... weird!

I will be eating anything and suddenly I can't swallow...and I try to swallow but can't do it and I can't get air down either...feel panicked by it and try drinking something but sometimes it's helpful but others not so much. I suddenly can't swallow! Then it clears up and I swallow and begin to breath again. Doesn't happen often but when it happens it is scary.

Also is losing balance a part of PF? I looked thru the messages about this but rapidly...I have a problem with balance...sometime I am dizzy and other times not. I almost fall inside or outside or in a store..anywhere. .it's strange...mostly I grab onto things but have come very close to hitting the ground. Joyce R AZ birds

[Guest guest]

Bruce,

I remember you mentioning this earlier but somehow did not connect it to what

happens to me I think I will speak to my doctor and ask about taking valium , i

dread this choking all the time i am eating.

Thanks

Geeta

> > >

> > > I will be eating anything and suddenly I can't swallow...and I try

> to

> > > swallow but can't do it and I can't get air down either...feel

> panicked by it

> > > and try drinking something but sometimes it's helpful but others not

> so much.

> > > I suddenly can't swallow! Then it clears up and I swallow and begin

> to

> > > breath again. Doesn't happen often but when it happens it is scary.

> > >

> > > Also is losing balance a part of PF? I looked thru the messages

> about

> > > this but rapidly...I have a problem with balance...sometime I am

> dizzy and

> > > other times not. I almost fall inside or outside or in a

> store..anywhere..it's

> > > strange...mostly I grab onto things but have come very close to

> hitting the

> > > ground. Joyce R AZ birds

> > >

> >

>

[Guest guest]

Geeta.... I'm seeing this post from you and so I'll hop in here and say hello! I read the post about your daily activities...interesting!

I didn't realize you have a problem choking when you eat. I have that sometimes and occasionally even without food in my mouth. It passes in a bit and it is not really SEVERE.

You know by now that the stay at the big house went ok. Found some minor diastolic heart failure and mild-moderate PH. for some reason I worry more about the PH...

The final conclusion is I am so SOB because of the NSIP and yet the pulmodude says the NSIP is not severe enough to cause such SOB. So I'll be working on getting something definite on that issue. Honestly, I do still feel confused...

Hope you are doing ok. I think of you so often. I stay so busy trying to keep up with the board and the newbies that I'm not in touch with those I

know well.

Be good to you and yours as always.

Love,

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Does this happen to any one?

Bruce,I remember you mentioning this earlier but somehow did not connect it to what happens to me I think I will speak to my doctor and ask about taking valium , i dread this choking all the time i am eating.ThanksGeeta> > >> > > I will be eating anything and suddenly I can't swallow...and I try> to> > > swallow but can't do it and I can't get air down either...feel> panicked by it> > > and try drinking something but sometimes it's helpful but others not> so much.> > > I suddenly can't swallow! Then it clears up and I swallow and begin> to> > > breath again. Doesn't happen often but when it happens it is scary.> > >> > > Also is losing balance a part of PF? I looked thru the messages> about> > > this but rapidly...I have a problem with balance...sometime I am> dizzy and> > > other times not. I almost fall inside or outside or in a> store..anywhere..it's> > > strange...mostly I grab onto things but have come very close to> hitting the> > > ground. Joyce R AZ birds> > >> >>

[Guest guest]

Sher

So did you have the right heart catheter and it confirmed mild to

moderate PH?

So sorry you had to spend two days there but hopefully on the way to

learning something. Hard to evaluate whether the NSIP is enough to cause

your SOB or not but good they are looking at other possible causes and

especially your heart. Glad everything reads mild and whatever they find

they can initiate treatment to keep it from becoming worse than mild.

> > > >

> > > > I will be eating anything and suddenly I can't swallow...and I

try

> > to

> > > > swallow but can't do it and I can't get air down either...feel

> > panicked by it

> > > > and try drinking something but sometimes it's helpful but

others not

> > so much.

> > > > I suddenly can't swallow! Then it clears up and I swallow and

begin

> > to

> > > > breath again. Doesn't happen often but when it happens it is

scary.

> > > >

> > > > Also is losing balance a part of PF? I looked thru the

messages

> > about

> > > > this but rapidly...I have a problem with balance...sometime I

am

> > dizzy and

> > > > other times not. I almost fall inside or outside or in a

> > store..anywhere..it's

> > > > strange...mostly I grab onto things but have come very close

to

> > hitting the

> > > > ground. Joyce R AZ birds

> > > >

> > >

> >

>

[Guest guest]

Sher,

Glad you are back home.

I wouldnt understand as much as perhaps Bruce , MB or other knowedgable ones but

your heart is not as healthy as it should be but if the dotors seem to find

nothing serious it will be one of the things you have to live . You can be alert

about your diet and stress levels.

Do take care,

Geeta

> > > >

> > > > I will be eating anything and suddenly I can't swallow...and I try

> > to

> > > > swallow but can't do it and I can't get air down either...feel

> > panicked by it

> > > > and try drinking something but sometimes it's helpful but others not

> > so much.

> > > > I suddenly can't swallow! Then it clears up and I swallow and begin

> > to

> > > > breath again. Doesn't happen often but when it happens it is scary.

> > > >

> > > > Also is losing balance a part of PF? I looked thru the messages

> > about

> > > > this but rapidly...I have a problem with balance...sometime I am

> > dizzy and

> > > > other times not. I almost fall inside or outside or in a

> > store..anywhere..it's

> > > > strange...mostly I grab onto things but have come very close to

> > hitting the

> > > > ground. Joyce R AZ birds

> > > >

> > >

> >

>

[Guest guest]

Geeta- Happy Day after Thanksgiving! What do you think causes that choking? It is terrible. You are correct you have to be very careful when eating. They did a test on me at NJH ad confirmed it happened to me but I can't remember what they said it was. Thanksgiving I was very very careful while I ate. I was afraid it would happen while I ate with all the guests. Joyce R AZ birds

It happens to me frequently Joyce, sometimes I feel I will die like only.The choking is horrific whemn you cannot swallow nor can you breathe the windpipe seems to close completely , slowly sipping water helps but it has to go by itself, there is noother way.I think we have to be very careful while eating and drinking.alert and consciuos of the process of eating..Geeta>> I will be eating anything and suddenly I can't swallow...and I try to > swallow but can't do it and I can't get air down either...feel panicked by it > and try drinking something but sometimes it's helpful but others not so much. > I suddenly can't swallow! Then it clears up and I swallow and begin to > breath again. Doesn't happen often but when it happens it is scary. > > Also is losing balance a part of PF? I looked thru the messages about > this but rapidly...I have a problem with balance...sometime I am dizzy and > other times not. I almost fall inside or outside or in a store..anywhere..it's > strange...mostly I grab onto things but have come very close to hitting the > ground. Joyce R AZ birds>