A Bit about me

[Guest guest]

I have just joined this group and I am so relieved to see that there are

actually people out there that know about Conn's syndrome or Hyperaldosteronism.

I am female, 56 years old and mine is a long story. Since I am not sure exactly

how the group works, I am uncertain as to the next steps. However, I will try

and give you my background in a nutshell, if that is possible. I have not been

diagnosed with Conns but I believe I have it and I will try and explain why.

FAMILY HISTORY

Mother's mother died at age 34 from what was called Bright's disease

Mother is 84 and relatively healthy all her life

Father has passed away and had some heart problems at a young age, was

relatively healthy, but definitely had to eat on time and needed food regularly.

He died at 79 - congestive heart/kidney failure

Brother died 3 years ago - cancer of the bowel and liver (a yr before he was

diagnosed with cancer, he had gone to doc about spells he was having and thought

it was diabetes (nothing else was checked)

My Other brother was misdiagnosed with paraganglioma about 2 1/2 yrs ago - it

was really Conn's and his tumor was removed this past summer.

Daughter was diagnosed with Thyroid Cancer after having 2nd baby and thyroid was

removed a yr and 1/2 ago.

MY HISTORY

As a child - growing pains or so I was told, earaches and nosebleeds were very

common. Ears rang then and still do.

Pre Teen - first period was brought on with horrible nosebleed and earache,

started getting upset stomach with periods

At the age of 14, I had high blood pressure and was told it was as high as a 90

yr old woman. Cause was not known until I started getting violently ill with

periods. (Dry heaves etc) I don't know what the cause was but obviously it had

something to do with hormones, because I put on the birth control pill to

regulate my BP and remained on it until my first child was born. At that time,

I was told pregnancy was the best thing for my blood pressure. My blood

pressure was fine until 5 yrs ago.

I always considered myself healthy and strong but I did have a lot of discomfort

with bloating, headaches, and hypoglycemic reactions. Would get the shakes and

need food immediately and was constantly being checked for diabetes. I sweat

very easily especially for a woman.

Around 4 /12 yrs ago, I started having dizzy sensations or that is what I called

them but they were (and still are) dizzy/tingly sensations. Theses started to

interfere with my work, The base of my skull was a point where these sensations

would throb up into my head. I would get waves of ? something, that went from

abdomen to my head - like a wave of fatigue if that makes sense because I was

always exhausted after this. I started to feel tingly and prickly all over,

muscles were tired, fingers felt numb, joints were really tingly.

I still have all of these symptoms, some are worse than others and some are not

at the same time. I have spots that get really tender so I have been told I

have Fibro/myofascial pain which I believe I do have but I do believe that the

root of my problems are something else.

My brother and I discovered that we were having a lot of the same symptoms but

his BP was really bad. He has been taken care of. I am still struggling. My

doctor has told me that Conn's is not hereditary and I have not had abnormal

tests other than problems with managing my blood pressure. On medication, I

tend to go so low that I can't stay on it and then I am back up to high in no

time.

When I have my episodes, which can be almost be predicated, they are so much at

the same time every day, I do sometimes get what I have always referred to as,

my hypoglycemic rushes that I feel as if I am getting doubly hit and absolutely

have to lay down.

I am now starting to get a feeling of pressure in my upper right abdomen with

occassional pain through to my back. This pressure is there most of the time now

but I started talking to my doctor about this over a year ago as i first started

to notice discomfort and/or twinges when I exercised or did something strenuous.

I am now starting to feel that pressure a bit on the left side as well.

I am waking up in the night and I feel all puffy and weird. My eyes feel puffy

a lot even during the day. I wake up with headaches sometimes. My joints are

also feeling puffy and extremely sore.

Do you think I have Conn's or am I totally on the wrong track. I live in Canada

and I am lucky to have a doctor so trying to find a new one is not as easy as it

sounds. I have even seen an internalist when my brother was diagnosed with

paraganglioma incorrectly and he was of absolutely no help.

I am getting worried. I feel pretty bad most of the time but not sick enough to

go to a hospital. I am a positive person and try to live each day to its

fullest but I am starting to wear thin.

I look forward to hearing from any of you and I thank you for reading this, if

you have gotten this far. Believe me - this is a nutshell!

Cheers!