doctors.

[Guest guest]

<< It's been going on

since Dec/Jan, and at that time everyone (drs) were

telling me it was the dry weather. I knew then that

that wasn't right, but couldn't convince anyone else >>

The doctors don't always know what they're talking about... I've run into

this kind of thing too. I may not have a medical degree but there is one

subject I'm an absolute expert on, and that is ME. I know me. I know my

whole history and every single ache and pain and odd feeling. I am not half

a chapter in somebody's textbook about rheumatoid arthritis. You may wear

the white coat but you really don't know much about how my body works and if

we have a disagreement about how I feel I will win every time.

I had a really bad and unusual reaction to an anti-nausea drug called

Compazine. It's called " akathisia " and is common with certain anti-psycotic

drugs but also occurs with Compazine and one other drug that's not related

to any of the others... begins with an R, I've forgotten the name. Reglan

maybe. Akathisia is a horrible feeling of near-psychotic anxiety and

restlessness and wrongness with everything in the world... people who've had

this reaction have been reported to rip out their IVs and run screaming

through the hospital naked. It's not that common with Compazine but it is a

documented and known effect of that drug in a very small percentage of

patients and I happened to be one. I tried to tell my doctor how I was

feeling but it's hard to make the words come out right. I felt anxious and

twitchy and my heart beat too fast and when I was sitting I wanted to be

walking and when I was walking I wanted to lay down and I always felt I

should be in some other place. It's so very hard to describe. And I knew

it HAD to be a chemical reaction to something because this was very

obviously not normal emotional anxiety or restlessness. It was a physical

disturbance and it was making me want to tear out my hair, very literally.

I did get a few chunks out one afternoon.

My doctor prescribed me an anti-anxiety medication that wouldn't kick in for

several weeks and sent me home. Obviously it didn't help. Then she tried a

stronger sedative and wanted me to see a counselor. I didn't have much luck

expressing to her that this was a physical problem and not the result of

stress. I would never have figured out what was wrong with me if I hadn't

coincidentally happened to read a friend's account in her online journal of

a feeling of WRONG and how the nurses at the hospital she was in immediately

recognized her symptoms as a Compazine reaction. I could have kissed her

for putting it into words so I could recognize what was wrong with me.

(I've pasted her words at the bottom of this post, with permission.)

I reported it to my doctor and she had never heard of anything called

akathisia and didn't know what I was talking about. I stopped taking the

Compazine immediately and within a few days I had lost the urge to claw my

eyes out and do the Polka on a major highway. I could have done serious

harm to myself or possibly others if the drug had built up in my system.

And my doctor not only didn't recognize the symptoms when I described them,

she had never heard of the problem at all.

The doctor is not always right.

Jenni

---

The story of Compazine, as told by my friend Danie:

Last year, I visited the ER for an allergic reaction to shellfish. One of

the drugs I received, Reglan, was to treat one of the results thereof, that

my digestive system had just completely stopped working. It got my stomach

gurgling again, but unfortunately, I suffered the kind of side effect I had

never in my life IMAGINED. Rob, figuring I was on my way to recovery, left

to grab some coffee. About two minutes later, I got the feeling that...

nothing in the world was right. I was miserable, physically and emotionally.

I sat up, because lying down was wrong. I stood up, because sitting was

wrong. I got back on the bed, because standing was wrong. I began to panic.

I began to whimper. I was all alone, and everything was WRONG. I ripped off

my blood pressure cuff and set to work on the things stuck to me to monitor

my heart. I was about to attack my IV when Rob returned, coffee in hand. I

looked at him and shrieked, " HELP ME! " He got a nurse.

The nurse came in and found me gesturing wildly at my IV. She examined it,

and it looked fine. She couldn't understand why I kept yelling, " It's bad,

it's bad, it's bad! " My regular nurse entered right then and realized what

was going on with me. Apparently, some people react this way to Reglan. I

got some kind of drug added to my IV, and within about five minutes, I felt

better, but embarrassed. The nurse told me that the last girl they had in

there who had the same reaction ended up ripping out her IV and running out

the ER doors, into the freezing cold, her bare butt hanging out of her gown.

So, yeah, it could have been worse.

And then... I started reacting the same way to this new drug that I had to

Reglan. Oh my deity, why does this shit always happen when I'm all alone?

Luckily, wandered in right then and knew from the way I looked that all

was not well. I started to cry. She asked me what I'd been given. She

grabbed a nurse. The nurse grabbed a doctor. The doctor yelled, " We have a

Compazine reaction over here! " I got some more drugs, which turned out to be

Benadryl and Ativan, Ativan being a tranquilizer.

That's the last thing I remember with any detail at all.

[Guest guest]

Wow Jenni, what an experience that must have been for you. I certainly hope

your doctor has learned to take her patients a little more seriously. She

was messing with your mental health and that's truly dangerous.

I know of one woman who had a similar experience, years ago, but she asked

the doctor, if he wouldn't do anything to please take her children, he

didn't, she harmed one of them for life and ended up losing her children for

good. Very sad but an example of doctors not trusting the patient and I

think not uncommon.

Dorey

www.LivingWithRheumatoidArthritis.com

----- Original Message -----

From: " Jenni " <chaospearl@...>

<Rheumatoid Arthritis >

Sent: Wednesday, April 27, 2005 7:06 PM

Subject: doctors.

>

> << It's been going on

> since Dec/Jan, and at that time everyone (drs) were

> telling me it was the dry weather. I knew then that

> that wasn't right, but couldn't convince anyone else >>

>

> The doctors don't always know what they're talking about... I've run into

> this kind of thing too. I may not have a medical degree but there is one

> subject I'm an absolute expert on, and that is ME. I know me. I know my

> whole history and every single ache and pain and odd feeling. I am not

> half

> a chapter in somebody's textbook about rheumatoid arthritis. You may wear

> the white coat but you really don't know much about how my body works and

> if

> we have a disagreement about how I feel I will win every time.

>

> I had a really bad and unusual reaction to an anti-nausea drug called

> Compazine. It's called " akathisia " and is common with certain

> anti-psycotic

> drugs but also occurs with Compazine and one other drug that's not related

> to any of the others... begins with an R, I've forgotten the name. Reglan

> maybe. Akathisia is a horrible feeling of near-psychotic anxiety and

> restlessness and wrongness with everything in the world... people who've

> had

> this reaction have been reported to rip out their IVs and run screaming

> through the hospital naked. It's not that common with Compazine but it is

> a

> documented and known effect of that drug in a very small percentage of

> patients and I happened to be one. I tried to tell my doctor how I was

> feeling but it's hard to make the words come out right. I felt anxious

> and

> twitchy and my heart beat too fast and when I was sitting I wanted to be

> walking and when I was walking I wanted to lay down and I always felt I

> should be in some other place. It's so very hard to describe. And I knew

> it HAD to be a chemical reaction to something because this was very

> obviously not normal emotional anxiety or restlessness. It was a physical

> disturbance and it was making me want to tear out my hair, very literally.

> I did get a few chunks out one afternoon.

>

> My doctor prescribed me an anti-anxiety medication that wouldn't kick in

> for

> several weeks and sent me home. Obviously it didn't help. Then she tried

> a

> stronger sedative and wanted me to see a counselor. I didn't have much

> luck

> expressing to her that this was a physical problem and not the result of

> stress. I would never have figured out what was wrong with me if I hadn't

> coincidentally happened to read a friend's account in her online journal

> of

> a feeling of WRONG and how the nurses at the hospital she was in

> immediately

> recognized her symptoms as a Compazine reaction. I could have kissed her

> for putting it into words so I could recognize what was wrong with me.

> (I've pasted her words at the bottom of this post, with permission.)

>

> I reported it to my doctor and she had never heard of anything called

> akathisia and didn't know what I was talking about. I stopped taking the

> Compazine immediately and within a few days I had lost the urge to claw my

> eyes out and do the Polka on a major highway. I could have done serious

> harm to myself or possibly others if the drug had built up in my system.

> And my doctor not only didn't recognize the symptoms when I described

> them,

> she had never heard of the problem at all.

>

> The doctor is not always right.

>

> Jenni

>

> ---

>

> The story of Compazine, as told by my friend Danie:

>

> Last year, I visited the ER for an allergic reaction to shellfish. One of

> the drugs I received, Reglan, was to treat one of the results thereof,

> that

> my digestive system had just completely stopped working. It got my stomach

> gurgling again, but unfortunately, I suffered the kind of side effect I

> had

> never in my life IMAGINED. Rob, figuring I was on my way to recovery, left

> to grab some coffee. About two minutes later, I got the feeling that...

> nothing in the world was right. I was miserable, physically and

> emotionally.

> I sat up, because lying down was wrong. I stood up, because sitting was

> wrong. I got back on the bed, because standing was wrong. I began to

> panic.

> I began to whimper. I was all alone, and everything was WRONG. I ripped

> off

> my blood pressure cuff and set to work on the things stuck to me to

> monitor

> my heart. I was about to attack my IV when Rob returned, coffee in hand. I

> looked at him and shrieked, " HELP ME! " He got a nurse.

>

> The nurse came in and found me gesturing wildly at my IV. She examined it,

> and it looked fine. She couldn't understand why I kept yelling, " It's bad,

> it's bad, it's bad! " My regular nurse entered right then and realized what

> was going on with me. Apparently, some people react this way to Reglan. I

> got some kind of drug added to my IV, and within about five minutes, I

> felt

> better, but embarrassed. The nurse told me that the last girl they had in

> there who had the same reaction ended up ripping out her IV and running

> out

> the ER doors, into the freezing cold, her bare butt hanging out of her

> gown.

> So, yeah, it could have been worse.

>

> And then... I started reacting the same way to this new drug that I had to

> Reglan. Oh my deity, why does this shit always happen when I'm all alone?

>

> Luckily, wandered in right then and knew from the way I looked that

> all

> was not well. I started to cry. She asked me what I'd been given. She

> grabbed a nurse. The nurse grabbed a doctor. The doctor yelled, " We have a

> Compazine reaction over here! " I got some more drugs, which turned out to

> be

> Benadryl and Ativan, Ativan being a tranquilizer.

>

> That's the last thing I remember with any detail at all.

>

>

>

>

>

>

[Guest guest]

Jenni,

I am sorry you and your friend had to go through a horrible ordeal, but thank

you so much for posting it. It is a lesson for all that we should not blindly

take

what the doctors tell us to, but do our own research and then make a decision.

--- In Rheumatoid Arthritis , Jenni <chaospearl@o...>

wrote:

> << It's been going on

> since Dec/Jan, and at that time everyone (drs) were

> telling me it was the dry weather. I knew then that

> that wasn't right, but couldn't convince anyone else >>

>

> The doctors don't always know what they're talking about... I've run into

> this kind of thing too. I may not have a medical degree but there is one

> subject I'm an absolute expert on, and that is ME. I know me. I know my

> whole history and every single ache and pain and odd feeling. I am not half

> a chapter in somebody's textbook about rheumatoid arthritis. You may wear

> the white coat but you really don't know much about how my body works

and if

> we have a disagreement about how I feel I will win every time.

>

> I had a really bad and unusual reaction to an anti-nausea drug called

> Compazine. It's called " akathisia " and is common with certain anti-psycotic

> drugs but also occurs with Compazine and one other drug that's not related

> to any of the others... begins with an R, I've forgotten the name. Reglan

> maybe. Akathisia is a horrible feeling of near-psychotic anxiety and

> restlessness and wrongness with everything in the world... people who've

had

> this reaction have been reported to rip out their IVs and run screaming

> through the hospital naked. It's not that common with Compazine but it is a

> documented and known effect of that drug in a very small percentage of

> patients and I happened to be one. I tried to tell my doctor how I was

> feeling but it's hard to make the words come out right. I felt anxious and

> twitchy and my heart beat too fast and when I was sitting I wanted to be

> walking and when I was walking I wanted to lay down and I always felt I

> should be in some other place. It's so very hard to describe. And I knew

> it HAD to be a chemical reaction to something because this was very

> obviously not normal emotional anxiety or restlessness. It was a physical

> disturbance and it was making me want to tear out my hair, very literally.

> I did get a few chunks out one afternoon.

>

> My doctor prescribed me an anti-anxiety medication that wouldn't kick in for

> several weeks and sent me home. Obviously it didn't help. Then she tried a

> stronger sedative and wanted me to see a counselor. I didn't have much

luck

> expressing to her that this was a physical problem and not the result of

> stress. I would never have figured out what was wrong with me if I hadn't

> coincidentally happened to read a friend's account in her online journal of

> a feeling of WRONG and how the nurses at the hospital she was in

immediately

> recognized her symptoms as a Compazine reaction. I could have kissed

her

> for putting it into words so I could recognize what was wrong with me.

> (I've pasted her words at the bottom of this post, with permission.)

>

> I reported it to my doctor and she had never heard of anything called

> akathisia and didn't know what I was talking about. I stopped taking the

> Compazine immediately and within a few days I had lost the urge to claw

my

> eyes out and do the Polka on a major highway. I could have done serious

> harm to myself or possibly others if the drug had built up in my system.

> And my doctor not only didn't recognize the symptoms when I described

them,

> she had never heard of the problem at all.

>

> The doctor is not always right.

>

> Jenni

>

> ---

>

> The story of Compazine, as told by my friend Danie:

>

> Last year, I visited the ER for an allergic reaction to shellfish. One of

> the drugs I received, Reglan, was to treat one of the results thereof, that

> my digestive system had just completely stopped working. It got my stomach

> gurgling again, but unfortunately, I suffered the kind of side effect I had

> never in my life IMAGINED. Rob, figuring I was on my way to recovery, left

> to grab some coffee. About two minutes later, I got the feeling that...

> nothing in the world was right. I was miserable, physically and emotionally.

> I sat up, because lying down was wrong. I stood up, because sitting was

> wrong. I got back on the bed, because standing was wrong. I began to

panic.

> I began to whimper. I was all alone, and everything was WRONG. I ripped

off

> my blood pressure cuff and set to work on the things stuck to me to monitor

> my heart. I was about to attack my IV when Rob returned, coffee in hand. I

> looked at him and shrieked, " HELP ME! " He got a nurse.

>

> The nurse came in and found me gesturing wildly at my IV. She examined it,

> and it looked fine. She couldn't understand why I kept yelling, " It's bad,

> it's bad, it's bad! " My regular nurse entered right then and realized what

> was going on with me. Apparently, some people react this way to Reglan. I

> got some kind of drug added to my IV, and within about five minutes, I felt

> better, but embarrassed. The nurse told me that the last girl they had in

> there who had the same reaction ended up ripping out her IV and running

out

> the ER doors, into the freezing cold, her bare butt hanging out of her gown.

> So, yeah, it could have been worse.

>

> And then... I started reacting the same way to this new drug that I had to

> Reglan. Oh my deity, why does this shit always happen when I'm all alone?

>

> Luckily, wandered in right then and knew from the way I looked that all

> was not well. I started to cry. She asked me what I'd been given. She

> grabbed a nurse. The nurse grabbed a doctor. The doctor yelled, " We have

a

> Compazine reaction over here! " I got some more drugs, which turned out to

be

> Benadryl and Ativan, Ativan being a tranquilizer.

>

> That's the last thing I remember with any detail at all.

[Guest guest]

Jenn,

I'm a new member here but I just have to relay a similar story to

you that I've had to deal with..on 2 seperate occasions.

The first time, I kept getting dizzy and lightheaded and panicky. I

kept going to doctor after doctor and they kept telling me it was in

my head. I got the good old prescription for an anti anxiety

med...with no results. I had one doctor even suggest that i check

myself into the mental health ward after I showed him an article on

yeast allergies. Nice guy! Finally a neurologist asked if I'd been

to an allergy doctor. I went...and found out that I have many many

allergies. One is a big allergy to yeast. YOu betcha...I wrote

that one nasty doctor a letter and sent one to the clinic head.

That was 9 yrs ago.

THen 2 years ago...I started doing the same kind of thing. Everyone

kept telling me it was in my head again. I was so mad that no one

would listen to me. I was crying and screaming " why doesn't anyone

believe me? " I kept telling them something was wrong. I was

panicky again, tingling arms, legs, depressed...except this time I

was dizzy everytime I sat up. I was vomiting and feeling awful. 3

different doctors all saying I had a panic disorder with situational

depression. I got the standard prescription for anti-depressants.

Then my next appt with my rheumatologist revealed through my blood

work that my liver function tests were showing dangerously high

levels of toxins. Geez...that's why I was feeling like death was

knocking. My rheumy took me off the meds he suspected were doing it

and I feel much better. I'm still taking the anti-depressants too.

I feel better and not so depressed with RA. The hardest part of

that one was that I couldn't start any different RA meds until my

liver counts whent back to normal. That took almost 3

months...three months of excruciating pain. Anyhow...I'm just here

to say...THE DOCTOR IS NOT ALWAYS RIGHT!!!!

~CHRIS

[Guest guest]

Hi

Your post brought to mind an actually humorous story. Years ago (in my early

20s) I had chronic yeast infections. I went for a second opinion to another

gynocologist who after examining me and talking to me suggested that I had a

sexual problem and perhaps I ought to see a therapist!

And then a not so humorous story in which my friend was told by a Doctor to

see a Psychiatrist because he was " losing time " . Turns out his " Mental

Illness " was caused by a rare blood clotting disease and he had clots in his

legs and lungs!

Bottom-line, only you know your body and if you don't feel right, keep going

until someone finds an answer. Doctors are so quick to label things as " All in

your head " when they can't figure out what is wrong!

> Jenn,

> I'm a new member here but I just have to relay a similar story to

> you that I've had to deal with..on 2 seperate occasions.

> The first time, I kept getting dizzy and lightheaded and panicky. I

> kept going to doctor after doctor and they kept telling me it was in

> my head. I got the good old prescription for an anti anxiety

> med...with no results. I had one doctor even suggest that i check

> myself into the mental health ward after I showed him an article on

> yeast allergies. Nice guy! Finally a neurologist asked if I'd been

> to an allergy doctor. I went...and found out that I have many many

> allergies. One is a big allergy to yeast. YOu betcha...I wrote

> that one nasty doctor a letter and sent one to the clinic head.

> That was 9 yrs ago.

>

> THen 2 years ago...I started doing the same kind of thing. Everyone

> kept telling me it was in my head again. I was so mad that no one

> would listen to me. I was crying and screaming " why doesn't anyone

> believe me? " I kept telling them something was wrong. I was

> panicky again, tingling arms, legs, depressed...except this time I

> was dizzy everytime I sat up. I was vomiting and feeling awful. 3

> different doctors all saying I had a panic disorder with situational

> depression. I got the standard prescription for anti-depressants.

> Then my next appt with my rheumatologist revealed through my blood

> work that my liver function tests were showing dangerously high

> levels of toxins. Geez...that's why I was feeling like death was

> knocking. My rheumy took me off the meds he suspected were doing it

> and I feel much better. I'm still taking the anti-depressants too.

> I feel better and not so depressed with RA. The hardest part of

> that one was that I couldn't start any different RA meds until my

> liver counts whent back to normal. That took almost 3

> months...three months of excruciating pain. Anyhow...I'm just here

> to say...THE DOCTOR IS NOT ALWAYS RIGHT!!!!

>

> ~CHRIS