Possible Pheochromocytoma - Please help with any advice
Posted , 18 users are following.
Hello all,
I am writing from Canada as there are no sites in my country dedicated to this condition. I have been suffereing acutely with the symptoms of a Pheo for almost a year, my first attack was 4 years ago. The attacks have slowly become more frequent and more dibilitating. The attacks include violent shaking, blister headache, vomitting, sneezing, heart pounding out of my chest. After an attack, I feel nauseated, weak, ache all over and have a headache that lasts for many hours. I have an attack almost every day and little exertion is now required to bring one on - sometimes getting out of bed does it. In between attacks, my BP is normal. It has disrupted my personal and work life beyond recognition. I have seen every "ologist" under the sun and only recently was told after blood and urine tests done by an Immunologist that I likely have a tumor on my adrenal gland. I am now waiting to see an Endocrinologist to have the diagnosis confirmed.
While I wait for this appointment (7 weeks - don't believe what you hear about the Canadian health care system being wonderful), can anyone reccomend anything that can reduce the chance of having an attack or the severity of these attacks. This seems funny but I was out on the town with my girlfriends several months ago (drank copious amounts of alcohol) and danced to the point of being out of breath and sweating - and NOTHING happened. Has anyone been prescribed CNS depressants as a way to ward off attacks? I'm willing to try anything though obviously becoming an alcoholic is not an option...hahaha.
Cheers,
Bren
1 like, 36 replies
karen2306 brenda88659
Posted
hello all, firstly sorry you're all going through this and hope you all get sorted.
when I was 19 (I'm now 45) I was diagnosed with A Pheochromacytoma, it took 12 years to diagnose, yes my GP was useless...
when I was 7 years old I had trouble lying down the pain used to make me scream and cry, when I got excited or scared I would Shake uncontrollably, my mum took me to the Doctors, they accused me of self harming!!
for 2 years I had this horrendous pain the it all of a sudden stopped, fast forward to 13 years old... I started with what felt like a constant stitch but in my back the back pain was constant and stopped me stopped me sleeping I ended up on tablets to help me sleep..at 13 on sleeping tablets, the back pain went on until I had the tumour removed.
at 18+ my weight loss was rapid I went from 12st (168lbs)down to just under 6st(84lbs) I kid you not my GPs response was that I needed a good "CURRY"... Say what now??? My boyfriend (now my Husband) took me to see his GP who literally wrote me a letter there and then rang the Endocrinologist Department and I went straight there within 24 hours of seeing my Husbands GP I had a diagnosis, unfortunately I had a malignant tumour which is apparently quite rare as they are normally Benign.
according to the Urologist and Endocrine Doc told me because of the size of the the tumour and the growth rate of them because they are slow growing hey said I'd had it for being 6 or 7 years old.
the pain I had as I said earlier about lying down I was told was probably the tumour destroying my Kidney, I had it removed in December 1997 one week before my 20th Birthday, my surgery was 16 hours as it had spread to my Aorta and had to be carefully removed... it took about 9 months to recover from my surgery fully and I have a whopping scar hat I'm very proud of😉.
so good luck everyone god speed and take care xxxx