Pheochromocytoma Support Group

A pheochromocytoma is a tumor of the medulla of the adrenal glands originating in the chromaffin cells, which secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine. Extra-adrenal paragangliomas are closely related, though less common, tumors that originate in the ganglia of the sympathetic nervous system and are named based upon the primary...

47 Members
43 Posts
0 Online
Endocrine System
/ Pheochromocytoma Support Group

Does anyone have similar symptoms?

deleted_user
deleted_user
I keep having these "attacks" where my blood pressure goes up drastically, my heart starts pounding out of my chest and my head feels like it's going to explode. When it happens I get so hot that I feel like my internal thermostat is broken, and I actually get a low grade fever. Sometimes this lasts for hours. I feel scared when it's happening that I think I'm dying. Afterwards I feel completely drained. It's the worst feeling I've ever had. It's even beginning to disturb my sleep. I wake up out of my sleep feeling like I have a pure adrenaline rush, and it scares me half to death. Doctors have tried to diagnose me with panic attacks and depression, but the antidepressants actually make it worse.
I feel like this could be a pheochromocytoma....any thoughts? Or has anyone else had similar symtpoms?
deleted_user
deleted_user
Yes, I have periods where my blood pressure goes like 210/110 or above. I have been rush to the er twice. Once was from my PCP, where I was talking to the doc about changing my thyroid meds and I got this weird feeling and fell to the floor. Doc called 911 and his thought was that I was having a TIA. Funny thing was my blood pressure just minutes before was 110/60 pulse 70. They did note that my pulse was like 110. I was told by the docs in the hospital that it was all in my head, meaning I made it up.
Then it happened again 7months later while doing noting at home. I called 911 after I took 2nitro which did not help. Again I was told it was a anxiety attack.
I know it is not all in my head or anxiety. I did have a blood test to check for adrenal tumor, but endo said it was not high enough to be pheo,

If you find out what is causing your symptoms, please let us know.

thanks,
bb
deleted_user
deleted_user
Gidday there from Oz, :)

I hope you are feeling okay today.
Your symptoms sound a bit like mine were, but with me there is one MAJOR symptom.

When I get a full blown attack, I get a *Rollercoaster* sensation, the same feeling you get when you go down that first dip in a Rollercoaster.
I hope this makes sense?

As far as your Doc saying you only have anxiety, get a 24 hour urine test done to show what is going on.

Best of luck with everything, I went undiagnosed for over 20 Years, (With the last 12 years being shear hell) and can only tell you DON'T GIVE UP UNTIL YOU HAVE BEEN SPECIFICALLY TESTED FOR PHAEO!!!
deleted_user
deleted_user
Keep a close eye on your blood pressure and have your adrenal glands scanned. My husband has a pheocromocytoma and your symptoms sound like his! Do you happen to be near a teaching hospital? They usually have more expieriance with these rare tumors.
redondogirl
redondogirl
This is exactly what I have been going through. I was at the ER again last night. High BP, intermittent high body heat, feelings of adrenaline rush, insomnia. I have had the 24 hour urine done twice and it comes back normal. I was told the tumor could be anywhere in the body. Trying to get these doctors to do somethng is like pulling teeth. I'm not sure where to go from here. The last time I went to see my doctor and brought up the symptoms again, he made me an appt. with a dermatologist. I'm at a loss as to what to do. I haven't slept in a few days again because of these symptoms..I am at a loss!!
princeofthenight9
princeofthenight9
Do not accept psychiatric medication unless they have tested for a pheo or paraganglioma, believe me, I was unaware of this kind of tumor at the time they put me on antidepressants, mood-stabilizers and it only ruined my life for years and worsened all the previous symptoms. I kept telling psychiatrists that everything was going worse and they did not care, they only increased the doses and made things a hell, causing me derealization, etc. And not only that, it changed the behaviour of the tumor and they misdiagnosed me for about three years more.
Posts You May Be Interested In
  • deleted_user

    Allergies

    Posted by: deleted_user
    Last Reply: SunCloudJD
    4
    I went to the doctor a while ago to see about my allergies. He rubbed my arm and stuck things under the skin. Nothing. He poked and prodded, his phlebotomist drew so much blood people thought that we were dating. The tests all came back negative. Then one day I went back and I told him that I had found the cause of my allergy.It turns out, I am allergic to betrayal.
  • deleted_user

    allergies!

    Posted by: deleted_user
    Last Reply: acuriousfish
    4
    This isn't really bipolar related but there is never anyone on the parenting groups, this is the most active group I've been in.My 6yr old son has really bad seasonal allergies and they're in full force right now. He gets a terrible cough; he coughs all day and all night, making it hard for him to sleep, and his nose runs.I've tried every allergy medicine, OTC and RX, and none of them affect his...