Re: My Update (Ellen)

January 15, 2001

Dear Ellen, (heavy on the Dear),

What an ordeal! I am so sorry this happened to you, but I'm inspired by your

courage and obvious positive outlook toward all this. You are much in my

prayers.

Willa

My Update (Ellen)

> Hi Everyone:

>

> Where do I start? For months and months, as you all know, I have been

complaining about a tightness and pain in my back. I have been to the

Emergency Room so many times and have seen so many doctors and have been

diagnosed with everything from the Virus, Urinary Tract Infection,

Withdrawal symptoms, Anxiety, Depression. I have seen psychologist,

psychiatrist....I have been put on anti-depressants and tranquilizers - and

as each day went by the pain just became more and more unbearable. I

complained to all the EPs at Duke and all they could say was that they " know

what it isn't " and it was not my heart. I called the Tikosyn Safety Center

and was told 3% of patients on Tikosyn complained of backache. There was

even a stupid thought that maybe I was part of that 3% and I would rather

suffer with the severe backache than go back into AFib :-<

>

> I was scheduled for a Bone Density Test the beginning of last year, but

when the Afib was diagnosed, it was suggested that I get the heart

straightened out first before I go through any routine test. As you all

know, after my second dose of Dofetilide/Tikosyn on October 10th of 2000, I

was in NSR. Therefore in November and December, I scheduled all my routine

exams. I went in for the Colonscopy with such back pains, I was in tears.

Thank goodness that exam itself was fine. I scheduled my Bone Density Test

and this time in *severe* back pain. I was told that I had Osteoporosis.

Once again I drove myself to the Emergency Room and sat is the parking lot

crying for about fifteen (15) minutes. My only thoughts were - how can I go

to the Emergency Room again with this same complaint - they would surely

lock me up and throw away the key. :,(

>

> I finally got the courage and managed to walk from the car to the

Emergency Room. In pain and absolute anger, I demanded an X-ray of my back

and was told that I not only had one compression fracture of the back, but

that there was an old fracture that had actually mended. Only the Lord

knows how long I have been living with fractures - I know I have been in

pain for months.

>

> Needless to say, I lost it...............talk about tension and

anxiety.......wow! They did lock me up and throw away the key <g>! I

admitted myself to the *you know what* floor of Duke. I am now under the

care of a Orthopaedic, Psychiatrist, Pain Management Team and on and on and

on............oh yes...how could I have forgotten? I am in the most

uncomfortable backbrace. They have started me on yet another drug -

Miacalcin Nasal Spray, which I understand is compatible with

Dofetilide/Tikosyn. I will be starting physical therapy tomorrow and they

may add Fosamax.

>

> There is a rainbow here however.............after a history of permanent

AFib, it has been over three (3) months since I was put on

Dofetilide/Tikosyn and despite severe pain and mega tension and anxiety, I

am still in NSR. Its such a puzzle to me that this drug can get me through

all this - I sure do hope I'm not jinxing myself by even thinking about it.

>

> I was staying with my daughter, but I am home now. I am still in pain and

very uncomfortable. They are telling me it could take anywhere from three

to six months to mend this second fracture. I'm also in a stupor most of

the time because of the every four (4) hour pain killer which by the way is

another constipating drug.........so I am on three stool softeners and two

laxatives every day (YUCK)!. As I mentioned to Bobby, its strange how the

pain of these fractures can overshadow the AFib.

>

> One more thought here................does the pain, etc. bring on the

tension/anxiety/depression or does the tension/anxiety/depression bring on

the pain? I would only hope that the medical field would ponder this

carefully when submitting a diagnosis!

>

> I don't get OnLine as often now as I would like - so please bear with me

if I do not respond to all of your good wishes and thoughts. At the risk of

wincing, you gals/guys have been my *backbone* <g>! I thank you all.

>

> My very best wishes to you all for a very Healthy and Happy 2001! I

just know it has to be a better year.

>

> Ellen

> (67 yrs young f/NC)

>

January 15, 2001

Ellen,

fantastic to hear from you - wow have you been through the mill lately!

I'm really sorry to hear about your back trouble and hope it heels sooner rather

than later!

It really is great news that you've managed to stay NSR through all this - it

sounds like dofetilide is performing miracles for you. I'm certain that anxiety

is par for the course for anyone going through what you are going through.

wishing you a speedy recovery

keep smiling

--

D

January 15, 2001

> Hi Everyone:

>

> Where do I start? For months and months, as you all know, I have

been complaining about a tightness and pain in my back. I have been

to the Emergency Room so many times and have seen so many doctors and

have been diagnosed with everything from the Virus, Urinary Tract

Infection, Withdrawal symptoms, Anxiety, Depression. I have seen

psychologist, psychiatrist....I have been put on anti-depressants and

tranquilizers - and as each day went by the pain just became more and

more unbearable. I complained to all the EPs at Duke and all they

could say was that they " know what it isn't " and it was not my heart.

I called the Tikosyn Safety Center and was told 3% of patients on

Tikosyn complained of backache. There was even a stupid thought that

maybe I was part of that 3% and I would rather suffer with the severe

backache than go back into AFib :-<

>

> I was scheduled for a Bone Density Test the beginning of last year,

but when the Afib was diagnosed, it was suggested that I get the heart

straightened out first before I go through any routine test. As you

all know, after my second dose of Dofetilide/Tikosyn on October 10th

of 2000, I was in NSR. Therefore in November and December, I

scheduled all my routine exams. I went in for the Colonscopy with

such back pains, I was in tears. Thank goodness that exam itself was

fine. I scheduled my Bone Density Test and this time in *severe* back

pain. I was told that I had Osteoporosis. Once again I drove myself

to the Emergency Room and sat is the parking lot crying for about

fifteen (15) minutes. My only thoughts were - how can I go to the

Emergency Room again with this same complaint - they would surely lock

me up and throw away the key. :,(

>

> I finally got the courage and managed to walk from the car to the

Emergency Room. In pain and absolute anger, I demanded an X-ray of

my back and was told that I not only had one compression fracture of

the back, but that there was an old fracture that had actually mended.

Only the Lord knows how long I have been living with fractures - I

know I have been in pain for months.

>

> Needless to say, I lost it...............talk about tension and

anxiety.......wow! They did lock me up and throw away the key <g>! I

admitted myself to the *you know what* floor of Duke. I am now under

the care of a Orthopaedic, Psychiatrist, Pain Management Team and on

and on and on............oh yes...how could I have forgotten? I am in

the most uncomfortable backbrace. They have started me on yet another

drug - Miacalcin Nasal Spray, which I understand is compatible with

Dofetilide/Tikosyn. I will be starting physical therapy tomorrow and

they may add Fosamax.

>

> There is a rainbow here however.............after a history of

permanent AFib, it has been over three (3) months since I was put on

Dofetilide/Tikosyn and despite severe pain and mega tension and

anxiety, I am still in NSR. Its such a puzzle to me that this drug

can get me through all this - I sure do hope I'm not jinxing myself by

even thinking about it.

>

> I was staying with my daughter, but I am home now. I am still in

pain and very uncomfortable. They are telling me it could take

anywhere from three to six months to mend this second fracture. I'm

also in a stupor most of the time because of the every four (4) hour

pain killer which by the way is another constipating drug.........so

I am on three stool softeners and two laxatives every day (YUCK)!. As

I mentioned to Bobby, its strange how the pain of these fractures can

overshadow the AFib.

>

> One more thought here................does the pain, etc. bring on

the tension/anxiety/depression or does the tension/anxiety/depression

bring on the pain? I would only hope that the medical field would

ponder this carefully when submitting a diagnosis!

>

> I don't get OnLine as often now as I would like - so please bear

with me if I do not respond to all of your good wishes and thoughts.

At the risk of wincing, you gals/guys have been my *backbone* <g>! I

thank you all.

>

> My very best wishes to you all for a very Healthy and Happy 2001!

I just know it has to be a better year.

>

> Ellen

> (67 yrs young f/NC)

>

January 15, 2001

Ellen Gilmartin wrote, basically.....

> " Ouch " !!!!!!!!

I am sure all our wishes go with you.

It's with stories like these I always recall the film " First Do no Harm "

(Ketogenic diet/Epilepsy). Anyone see it? Boy it always makes me real

angry! And my Doc wonders why I want to steer clear of amiodarone !

--

Best of health

Vicky

January 15, 2001

Yes, I saw the film " First Do No Harm " . Another along the same line is a

film called " Lorenzo's Oil " .

I refuse to let go of the concept that the doctor is employed by me: I'm

sure that every one of them would balk at that concept. It's better when we

are able to do as Ellen did and " demand " an xray, or other investigation

that is needed.

Willa

Re: My Update (Ellen)

> Ellen Gilmartin wrote, basically.....

>

> > " Ouch " !!!!!!!!

>

> I am sure all our wishes go with you.

>

> It's with stories like these I always recall the film " First Do no Harm "

> (Ketogenic diet/Epilepsy). Anyone see it? Boy it always makes me real

> angry! And my Doc wonders why I want to steer clear of amiodarone !

>

> --

> Best of health

> Vicky

>

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January 15, 2001

Hi, Ellen,

What an ordeal. We should all keep this in mind when we know

something is wrong and we are just not getting reasonable responses

from our doctors. I know from personal experience how easy it is to

think, well, the doctor is right, I am being anxious/a

hypochondriac. Thank God I now have a doctor who listens to me. No

wonder we get anxious when we know even subconsciously that something

is wrong and we are being told it is nothing.

I am so glad you are in nsr! A bright spot in all this.

Also off topic about osteoporosis, I can second Ellen's suggestion

about getting a bone density test. They are so simple that I am

surprised the doc said " Put it off. " You just lay on a table and a

mild xray machine passes over your body and right then and there they

can tell you the results. I had one as a baseline, just on a whim,

when I turned 50, not expecting anything wrong, because I have few

risk factors, but I had osteopinea, which is part way towards

osteoporosis. It turns out I can't use vitamin D efficiently, so

snarfing down calcium suppliments had been useless. They are able to

fix this easily with prescription strength vitamin d.

I would add about fosamax that it can cause irritation of the

esophagus unless you are upright for awhile (30 minutes? I forget)

after you take it. This irritation can be indistinguishable from

angina. I followed the directions to do that and still had a problem

significant enough that I toddled into the doc and said, is this a

heart attack, or the fosamax? I no longer take it - hormone

replacement therapy (HRT), at least in my case, is just as good for

putting bone back along with the calcium suppliments and presc.

strength vitamin D. I had to try several hrt meds to find one that

didn't cause nausea, etc. I take estrace and prometrium now. They

have the advantage over premarin that they don't involve cruelty to

animals in the production.

Also, Ellen, I think you had mentioned tremoring and ativan. I

posted awhile back a little about that. I also discovered in the

past few days that taking a B complex of vitamins helps reduce the

pins and needles and (fake) hot/warm feelings associated with them.

So glad you are back, please let us know how you are doing,

Trudy

January 15, 2001

Dear Ellen,

How sorry I am for your suffering! Your warmth and humor have been

sorely missed on this board, but I am glad you have been taking good

care of yourself in such difficult circumstances.

You are in my prayers,

Lee