Strange attacks.

[Guest guest]

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever. The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing. Then my heart feels like it's beating out of my chest. These attacks don't go away. I either take ritalin or a sleeping pill, depending on what time of day it is. Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around. By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike

and the other after using the rowing machine. Never has an attack occurred when I am stressed-out, angry, or sad. Usually I'm just watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue. Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks. All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor. He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches. I've tried doing without the patches but the pain gets unbearable. I feel as if I am in between a rock and a hard place.The last

thing I am trying is going to a cardiologist. There is an very high rate of heart disease and defects in my y. family. My father died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks. My neice and my nephew were born with heart defects, and my son was born with a hole in his heart. Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.I hope they can find out what's wrong. The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired. I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.If anyone has any ideas about these attacks, I would welcome the input. In any case, I would appreciate your prayers.Take care,To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:01 AMSubject: RE: Hello? Hello? Anybody there?

, what dose of Lyrica are you taking? When I first started it a few years ago, I was supposed to take 150mg twice a day. At that time I couldn't take the morning dose; I was just zonked out all day. So I took the 150 at night for a couple of years. The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night. That helped for about a year, then I decided to try the 150 twice a day again. I guess I'd built up a tolerance, because I had no problem with it & it did help a bit. A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah! I lasted a week before I gave in & restarted it. So the point to all this is that you may have to back the dose down & let your body adjust. It's that dang balance between the disease & the treatment; pain or zombie state.

Did you say that you had seen a neuro-opthalmologist? Have you advised him of the worsening vision? Maybe it's time to try adding another med to the mix.

I typed "treatment of ocular sarcoidosis" in my search engine & got this doc's website. You can probably skim through & see if any of this describes your visual problems. Other than the steroids, he mentions chemo for neurological involvement. I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision. This is an older site--1996, I think.

http://www.sarcoidosisnetwork.org/documents/sarcoideye.html

I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success.

Another article mentions Mtx & other immunosuppressants/modifiers with mixed success: http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me. I always hate to assume, because we often just don't think of everything ourselves. I hope that you can get some answers on what's happening & your options for treatment. Let us know what happens.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

said: The last thing I am trying is going to a cardiologist.

Pray tell, girlfriend, why don't you want to see a cardiologist when you're heart is acting funky?!?

You know the old myth about ostriches, right? I'll go with you if you want, just make that appt.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: rkelty99@...Date: Mon, 15 Nov 2010 23:08:01 -0800Subject: Strange attacks.

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever. The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing. Then my heart feels like it's beating out of my chest. These attacks don't go away. I either take ritalin or a sleeping pill, depending on what time of day it is. Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around. By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike and the other after using the rowing machine. Never has an attack occurred when I am stressed-out, angry, or sad. Usually I'm just watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue. Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks. All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor. He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches. I've tried doing without the patches but the pain gets unbearable. I feel as if I am in between a rock and a hard place.The last thing I am trying is going to a cardiologist. There is an very high rate of heart disease and defects in my y. family. My father died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks. My neice and my nephew were born with heart defects, and my son was born with a hole in his heart. Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.I hope they can find out what's wrong. The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired. I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.If anyone has any ideas about these attacks, I would welcome the input. In any case, I would appreciate your prayers.Take care,

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:01 AMSubject: RE: Hello? Hello? Anybody there?

, what dose of Lyrica are you taking? When I first started it a few years ago, I was supposed to take 150mg twice a day. At that time I couldn't take the morning dose; I was just zonked out all day. So I took the 150 at night for a couple of years. The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night. That helped for about a year, then I decided to try the 150 twice a day again. I guess I'd built up a tolerance, because I had no problem with it & it did help a bit. A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah! I lasted a week before I gave in & restarted it. So the point to all this is that you may have to back the dose down & let your body adjust. It's that dang balance between the disease & the treatment; pain or zombie state. Did you say that you had seen a neuro-opthalmologist? Have you advised him of the worsening vision? Maybe it's time to try adding another med to the mix. I typed "treatment of ocular sarcoidosis" in my search engine & got this doc's website. You can probably skim through & see if any of this describes your visual problems. Other than the steroids, he mentions chemo for neurological involvement. I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision. This is an older site--1996, I think. http://www.sarcoidosisnetwork.org/documents/sarcoideye.html I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success. Another article mentions Mtx & other immunosuppressants/modifiers with mixed success: http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me. I always hate to assume, because we often just don't think of everything ourselves. I hope that you can get some answers on what's happening & your options for treatment. Let us know what happens.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

At first I think Panic attack, but then as you go on, I think you should have your heart checked out, you just never know.  I do have the I'm so tired I feel sick, like I'm getting the flu, and just can't go on anymore, I get body aches, and will even get nausea  and start vomiting if I don't go to bed.  It's crazy.

So I think our bodies react to fatigue in different ways, but having your heart checked out, would at least be a start. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever.  The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing.  Then my heart feels like it's beating out of my chest.  These attacks don't go away.  I either take ritalin or a sleeping pill, depending on what time of day it is.  Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around.  By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike

and the other after using the rowing machine.  Never has an attack occurred when I am stressed-out, angry, or sad.  Usually I'm just watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).

I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue.  Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks.  All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor.  He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches.  I've tried doing without the patches but the pain gets unbearable.  I feel as if I am in between a rock and a hard place.

The last

thing I am trying is going to a cardiologist.  There is an very high rate of heart disease and defects in my y. family.  My father died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks.  My neice and my nephew were born with heart defects, and my son was born with a hole in his heart.  Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.

I hope they can find out what's wrong.  The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired.  I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.

If anyone has any ideas about these attacks, I would welcome the input.  In any case, I would appreciate your prayers.Take care,

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:01 AM

Subject: RE: Hello? Hello? Anybody there?

 

, what dose of Lyrica are you taking?  When I first started it a few years ago, I was supposed to take 150mg twice a day.  At that time I couldn't take the morning dose; I was just zonked out all day.  So I took the 150 at night for a couple of years.  The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night.  That helped for about a year, then I decided to try the 150 twice a day again.  I guess I'd built up a tolerance, because I had no problem with it & it did help a bit.  A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah!  I lasted a week before I gave in & restarted it.  So the point to all this is that you may have to back the dose down & let your body adjust.  It's that dang balance between the disease & the treatment; pain or zombie state.

 

Did you say that you had seen a neuro-opthalmologist?  Have you advised him of the worsening vision?  Maybe it's time to try adding another med to the mix.

 

I typed  " treatment of ocular sarcoidosis " in my search engine & got this doc's website.  You can probably skim through & see if any of this describes your visual problems.  Other than the steroids, he mentions chemo for neurological involvement.  I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision.  This is an older site--1996, I think. 

http://www.sarcoidosisnetwork.org/documents/sarcoideye.html

 

I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success. 

 

Another article mentions Mtx & other immunosuppressants/modifiers with mixed success:  http://emedicine.medscape.com/article/1229262-treatment

You may have already tried researching ocular sarc; forgive me if you are way ahead of me.  I always hate to assume, because we often just don't think of everything ourselves.  I hope that you can get some answers on what's happening & your options for treatment.  Let us know what happens.

 

 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

  

> To: Neurosarcoidosis > From: denise@...

> Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?

> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> >

> > .......................................................................................................> http://sutherland-studios.com.au

> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches

> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.

> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

[Guest guest]

I guess I was writing clearly -- What I meant to say is the last thing I am trying is going to a cardiologist. Meaning I AM going -- on the 29th, I think. My sister-in-law works in the cardiology department at Methodist hospital and got me in with an excellent doctor who specializes in conduction problems. I guess that's what it sounded like to her (and that's the problem my brother had.)Sorry for the mix-up.From: Rose

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:14 PMSubject: RE: Strange attacks.

said: The last thing I am trying is going to a cardiologist.

Pray tell, girlfriend, why don't you want to see a cardiologist when you're heart is acting funky?!?

You know the old myth about ostriches, right? I'll go with you if you want, just make that appt.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: rkelty99@...Date: Mon, 15 Nov 2010 23:08:01 -0800Subject: Strange attacks.

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever. The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing. Then my heart feels like it's beating out of my chest. These attacks don't go away. I either take ritalin or a sleeping pill, depending on what time of day it is. Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around. By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike and the other after using the rowing machine. Never has an attack occurred when I am stressed-out, angry, or sad. Usually I'm just

watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue. Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks. All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor. He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches. I've tried doing without the patches but the pain gets unbearable. I feel as if I am in between a rock and a hard place.The last thing I am trying is going to a cardiologist. There is an very high rate of heart disease and defects in my y. family. My father

died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks. My neice and my nephew were born with heart defects, and my son was born with a hole in his heart. Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.I hope they can find out what's wrong. The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired. I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.If anyone has any ideas about these attacks, I would welcome the input. In any case, I would appreciate your prayers.Take care,

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:01 AMSubject: RE: Hello? Hello? Anybody there?

, what dose of Lyrica are you taking? When I first started it a few years ago, I was supposed to take 150mg twice a day. At that time I couldn't take the morning dose; I was just zonked out all day. So I took the 150 at night for a couple of years. The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night. That helped for about a year, then I decided to try the 150 twice a day again. I guess I'd built up a tolerance, because I had no problem with it & it did help a bit. A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah! I lasted a week before I gave in & restarted it. So the point to all this is that you may have to back the dose down & let your body adjust. It's that dang balance between the disease & the treatment; pain or zombie state. Did you say that you had

seen a neuro-opthalmologist? Have you advised him of the worsening vision? Maybe it's time to try adding another med to the mix. I typed "treatment of ocular sarcoidosis" in my search engine & got this doc's website. You can probably skim through & see if any of this describes your visual problems. Other than the steroids, he mentions chemo for neurological involvement. I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision. This is an older site--1996, I think. http://www.sarcoidosisnetwork.org/documents/sarcoideye.html I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success. Another article mentions Mtx & other immunosuppressants/modifiers with

mixed success: http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me. I always hate to assume, because we often just don't think of everything ourselves. I hope that you can get some answers on what's happening & your options for treatment. Let us know what happens.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au/>

> Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > >

> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Renne, Glad to hear that you are going, let us know what they find out. your certainly in my prayers. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

I guess I was writing clearly -- What I meant to say is the last thing I am trying is going to a cardiologist.  Meaning I AM going -- on the 29th, I think.  My sister-in-law works in the cardiology department at Methodist hospital and got me in with an excellent doctor who specializes in conduction problems.  I guess that's what it sounded like to her (and that's the problem my brother had.)

Sorry for the mix-up.

From: Rose

To: neurosarcoidosis

Sent: Tue, November 16, 2010 12:10:14 PMSubject: RE: Strange attacks.

 

said:  The last thing I am trying is going to a cardiologist. 

 

Pray tell, girlfriend, why don't you want to see a cardiologist when you're heart is acting funky?!?

You know the old myth about ostriches, right?  I'll go with you if you want, just make that appt.

Ramblin' RoseModerator

 

 

It's not that life is so short-------It's that we wait so long to begin. 

(attributed to Wooden, among others)  

To: Neurosarcoidosis From: rkelty99@...Date: Mon, 15 Nov 2010 23:08:01 -0800

Subject: Strange attacks.

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever.  The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing.  Then my heart feels like it's beating out of my chest.  These attacks don't go away.  I either take ritalin or a sleeping pill, depending on what time of day it is.  Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around.  By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike and the other after using the rowing machine.  Never has an attack occurred when I am stressed-out, angry, or sad.  Usually I'm just

watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue.  Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks.  All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor.  He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches.  I've tried doing without the patches but the pain gets unbearable.  I feel as if I am in between a rock and a hard place.

The last thing I am trying is going to a cardiologist.  There is an very high rate of heart disease and defects in my y. family.  My father

died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks.  My neice and my nephew were born with heart defects, and my son was born with a hole in his heart.  Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.

I hope they can find out what's wrong.  The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired.  I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.

If anyone has any ideas about these attacks, I would welcome the input.  In any case, I would appreciate your prayers.Take care,

To: neurosarcoidosis

Sent: Tue, November 16, 2010 12:10:01 AMSubject: RE: Hello? Hello? Anybody there? 

, what dose of Lyrica are you taking?  When I first started it a few years ago, I was supposed to take 150mg twice a day.  At that time I couldn't take the morning dose; I was just zonked out all day.  So I took the 150 at night for a couple of years.  The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night.  That helped for about a year, then I decided to try the 150 twice a day again.  I guess I'd built up a tolerance, because I had no problem with it & it did help a bit.  A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah!  I lasted a week before I gave in & restarted it.  So the point to all this is that you may have to back the dose down & let your body adjust.  It's that dang balance between the disease & the treatment; pain or zombie state.

 Did you say that you had

seen a neuro-opthalmologist?  Have you advised him of the worsening vision?  Maybe it's time to try adding another med to the mix. I typed  " treatment of ocular sarcoidosis " in my search engine & got this doc's website.  You can probably skim through & see if any of this describes your visual problems.  Other than the steroids, he mentions chemo for neurological involvement.  I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision.  This is an older site--1996, I think. 

http://www.sarcoidosisnetwork.org/documents/sarcoideye.html I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success. 

 Another article mentions Mtx & other immunosuppressants/modifiers with

mixed success:  http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me.  I always hate to assume, because we often just don't think of everything ourselves.  I hope that you can get some answers on what's happening & your options for treatment.  Let us know what happens.

  

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   > To: Neurosarcoidosis > From: denise@...

> Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?

> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> >

> > .......................................................................................................> http://sutherland-studios.com.au/

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Oops, my bad! I read it as though seeing a cardiologist was the LAST thing you'd try! I see Dr. Groh at the Krannert Inst. of Cardiology at Methodist. I've been very impressed with him.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rkelty99@...Date: Wed, 17 Nov 2010 05:54:58 -0800Subject: Re: Strange attacks.

I guess I was writing clearly -- What I meant to say is the last thing I am trying is going to a cardiologist. Meaning I AM going -- on the 29th, I think. My sister-in-law works in the cardiology department at Methodist hospital and got me in with an excellent doctor who specializes in conduction problems. I guess that's what it sounded like to her (and that's the problem my brother had.)Sorry for the mix-up.

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:14 PMSubject: RE: Strange attacks.

said: The last thing I am trying is going to a cardiologist. Pray tell, girlfriend, why don't you want to see a cardiologist when you're heart is acting funky?!?You know the old myth about ostriches, right? I'll go with you if you want, just make that appt.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: rkelty99@...Date: Mon, 15 Nov 2010 23:08:01 -0800Subject: Strange attacks.

I'm writing to find out if anyone has ever experienced anything like this or has any idea what it could be:The first symptom is I have the sensation of being WAY too tired -- the kind of tired that makes you want to pull up into a little ball and lie down forever. The second sensation is a tightening of the throat --kind of like an asthma attack, but there is no wheezing. Then my heart feels like it's beating out of my chest. These attacks don't go away. I either take ritalin or a sleeping pill, depending on what time of day it is. Now, if I take my ritalin twice a day like I'm supposed to, the attacks don't seem to come around. By the way, the attacks usually happen when I am relaxed, but they have come on also right after I exercise-- once after a hard hike and the other after using the rowing machine. Never has an attack occurred when I am stressed-out, angry, or sad. Usually I'm just watching television or lying down to go to bed (I am usually on my way to bed in either case, since I feel so utterly tired when these come on).I have described these attacks to several doctors and they all think they are panic attacks which I would buy except for the extreme fatigue. Whatever they are they are aweful -- I'd rather be in pain with ice packs all over my body (an event that happens several times a week) than have even one more of these attacks. All but one doctor want me to go on tranquilizers, but the one doctor who says no is my pain doctor. He said if I did go on zanex (sp?) I would have to stop using the fentanyl patches. I've tried doing without the patches but the pain gets unbearable. I feel as if I am in between a rock and a hard place.The last thing I am trying is going to a cardiologist. There is an very high rate of heart disease and defects in my y. family. My father died at 61 of a hear attack and he had his first one when he was 46 (I am 51). Two of my grandparents died of heart attacks. My neice and my nephew were born with heart defects, and my son was born with a hole in his heart. Finally, my brother had a pacemaker put in last summer because of an irregular heart beat.I hope they can find out what's wrong. The worst thing is that my left leg is starting to go out on me again if I walk too long or am too tired. I think I am going to have to go back to using a cane again -- something I haven't had to do in about three years.If anyone has any ideas about these attacks, I would welcome the input. In any case, I would appreciate your prayers.Take care,

To: neurosarcoidosis Sent: Tue, November 16, 2010 12:10:01 AMSubject: RE: Hello? Hello? Anybody there? , what dose of Lyrica are you taking? When I first started it a few years ago, I was supposed to take 150mg twice a day. At that time I couldn't take the morning dose; I was just zonked out all day. So I took the 150 at night for a couple of years. The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night. That helped for about a year, then I decided to try the 150 twice a day again. I guess I'd built up a tolerance, because I had no problem with it & it did help a bit. A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah! I lasted a week before I gave in & restarted it. So the point to all this is that you may have to back the dose down & let your body adjust. It's that dang balance between the disease & the treatment; pain or zombie state. Did you say that you had seen a neuro-opthalmologist? Have you advised him of the worsening vision? Maybe it's time to try adding another med to the mix. I typed "treatment of ocular sarcoidosis" in my search engine & got this doc's website. You can probably skim through & see if any of this describes your visual problems. Other than the steroids, he mentions chemo for neurological involvement. I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision. This is an older site--1996, I think. http://www.sarcoidosisnetwork.org/documents/sarcoideye.html I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success. Another article mentions Mtx & other immunosuppressants/modifiers with mixed success: http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me. I always hate to assume, because we often just don't think of everything ourselves. I hope that you can get some answers on what's happening & your options for treatment. Let us know what happens.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au/> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >