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Avoid anything with caffeine; avoid eating ready prepared foods or eat food no more than two days old from cooking; it is better to freeze your food after one day and take it out of the freezer and thaw it to eat a few days later - as this reduces the level of tyramine within the food. Avoid smoked, cured or pickled foods - contain high levels of tyramine. Refrigerate your meals as soon as possible no more than two days left in a fridge. All cooked foods produce tyramine which is a naturally producing enzyme in all foods which increases on a daily basis. Stick to a healthy diet, concentrate on the colour of the foods, orange, red, green - you eat to avoid cancers as these paras and phoes manifest themselves in slow growing tumours, which could become malignant. Look up the effects of tyramine and the type of foods to avoid and you will be able to live healthily. Exercise regularly. I have an inoperable tumour which continues to secrete high amounts of adrenaline in my system but I am under a great endocrinologist who is helping me greatly. I am also on BP medication and looking to undergo peptide therapy to shrink the tumour because of the extremely high BP levels recently. It was explained to me that I had paraganglioma, and not phoechrometomia, given the 3 tumours which were discovered, were outside my endocrine. I undergo yearly MRI scans. I had the conditions for most of my life but only found out the name of it when I turned 60. I am on a quest to stay health and enjoy life. Palpitations and anxiety are almost non-existent for me now since following a healthier life style.

I am pheo patient 2021 surgery in banglore msramaiah hospital no symtoms pain and prick the needlepain lower qurdent

I have trauma from this too and understand now what people go through. Having someone with you that you love is extremely comforting and is very necessary. Hope you continue to thrive!

Thankyou Lisa for your honest and heartfelt video. You are a beautiful soul.

I had a right pheo removed in March of 2020. I started getting sick again last October but i didn't have insurance. I am insured now and being tested trying to get a ct scan approval. I have been seeing my bp reach 175/130 for the last week. These things are no joke, Praying i don't have a second.

Thank you for sharing your story. I am going through the same journey. My pheo is significantly smaller - I have a lymphangioma as well on my other kidney. I can’t wait to get these out of my body.

Just because something is rare does not mean it is impossible. When a physician shuts you down and says "it is way too rare", then another physician should be utilized. It is terrible that doctors do that and patients have to fight so hard for themselves.

Wow this hits hard I’m going on the fifth to my endocrinologist and this is insane same symptoms same everything!

I am so sorry to hear this. Thank you for telling us so we can help others.

Thanks for sharing. How long did it take for you to withdrawal from the anxiety meds?

I have MEN 2A And having once again, pheo symptoms & just had images, now await the results... I have many family members with pheo surgery... It's a awful feeling... Horrific. Glad your recovered, thank For your sharing....

Hi, I have had MEN 2/A since 1985. My medullary thyroid cancer has come back 3 times. I have had pheo symptoms since 1994. Drs cannot find it, just having symptoms increasing for pheos. Abdomen pain, 3 pheo attacks in 2 weeks. It's a horrible feeling, the pheo attacks. ... My Drs talking about taking my anxiety meds away...I told her Noooo, this protects me to cool off pheo attacks. In Florida these new laws with meds is getting outrageous, and I am on a tiny dose twice a day for anxiety meds. I have been trying to cut back, it's back fired, paramedics came 2 days ago.... I have AFib, high BP, and the sudden, surges of Adrenaline.... Now left abdomen pain, and this last pheo attack really was awful. I just had ultrasound, CT. See Drs soon. I want to see the reports myself in my hands... I know darn well it's a pheo, but, as my endocrinologist told me long ago, some pheos hide and are so tiny, but can make a person sick. I think this time something will be found.... I cannot take much more of this.. My Dr best not take my anxiety meds away.... I will be showering her my heart strip from paramedics. I should went to the hospital the other day, but, declined, as my pheo attack cooled off.. I am being so careful until I see my Drs soon FYI~~ *My Family Helped Create* *The RET Proto* *oncogene test* *In 1995* I have 6 Generations of MEN 2A. The mutation our family has is very dominant for us all the eventually have pheos. Many of my family has had pheos removed, here me, having symptoms more than everyone it's been rough to locate a pheo. Thank You for your story. We Have a book that a group of us put together in a support group For Medullary Thyroid Cancer in 2015. The book is on Amazon It's called~ *After The Diagnosis* *Medullary Thyroid Cancer* All money goes to Thyroid Cancer Research. Not trying to sell anything, but, take a look on Amazon, my story is a Chapter named 5 Generations, at the time, we only knew of 5 Generations of MEN 2A. God Bless You, thankfully you made it through those pheochromocytomas.... Take it easy 🙏💞

Hi

Thank you for sharing. I’m awaiting imaging for a suspected pheo, and although your story scares the heck out of me, I’m comforted by hearing your experience.

Thanks for your story. I have recently been having all these issues and the doctor thinks this is what I might have. It is the most terrible feeling I've ever felt. I was prescribed alpha blocker today and I did my 24 hour urine test yesterday. I'm a recovered heroin addict and this is more awful than detoxing from the worst addiction of my life. I feel like I'm going to die from about 4pm to about 9 pm. Dysphoria, high adrenaline, panic, lower back pain, and extreme restless feeling. Hardest month of my life. I have to stay strong.

Thank you for sharing your story.

I got diagnosed with chronic kidney disease but Ive been having bad anxiety and stress. I feel like my heart is pounding out of my chest. I also have verry bad sleep. Hopefully I will get the treatment I need someday.😅

too rare to be a pheo.. but they are real!.. advocating for my health... palor high bp. heart racing. . the sweating is unreal...trembling .incoherent... x

I am so sorry for your loss, Julie! 😢

Thank you for sharing your story. My mom is going through the process of being diagnosed with this. She luckily had one of her “attacks” in front of her doctor and they think she has Pheo. I struggle with anxiety myself and I’m worried i could have it as well. Hearing your story helped me understand even more. Thank you.

Kari thank you for sharing your story. I'm glad you and your son are okay. My daughter and I are going through the classic triad intermittently. I have night sweats as well and we both suffer from mood swings, anxiety, and depression. Our lab work came back normal and our doctor thinks it's all in our head or just depression in general. I keep telling her how is it that both of us have the same symptoms, just at different times smh. I feel bad I may have passed it along to my daughter since it is hereditary:(. We're getting the proper tests and will see an Endocrinologist for a proper diagnosis, I hope. The more we raise awareness, the more lives can be saved. Wishing you and your family great health and blessings!

Thanks for sharing. God bless you and your family.

Thanks for sharing. God bless you and your family.

Thank you for sharing. My sister was recently diagnosed w/ Pheo. I am doing all the research I can so we can make the most educated medical decisions for her. She has the classic triad of symptoms. Sweating profusely, episodic hypertension and headaches, skin rashes and itching, anxiety and depression, etc… Her tumor measures 3.8cm x 3.3cm according to MRI. Her lab work was off the charts, her metanephrine and normetanephrine were extremely high. Her o2 is chronically low. She cannot breathe. I just wanted to say thank you for sharing your story. Please pray for my family.

they just found a 1.3cm tumor on my right adrenal. Been having near constant anxiety no panic attacks. But the anxiety is through the roof.

Thank you for sharing.

Currently going through most of the symptoms I have hypothyroidism, anxiety so bad I have panic attacks/ can never leave the bathroom. My 24 hr urine had abnormal amounts of hormones, so I’m waiting for new ct scan.

I am recently diagnosed through a hypertensive crisis with an adrenaline level of around 300000 and two cardiac arrests. Now taking meds and trying to recover before I go into surgery. Have already had central lines and been in ICU so am terrified to be in that position again with surgery but keen to get this large pheo out. It haemorrhaged as well and we are trying to see if the bleed reduces. From what they say so far, they believe it to be around 10 cm and only one large tumor. I am also in NZ.

Having the same exact things happening to me, 48, male. After chasing my high Blood Pressure for this past year, put into hospital twice as they thought i was having heart attack or would stroke with BP levels 282/134, put me on 8 BP meds and can't keep it down, anxiety issues, headaches, weight loss, finally my doctor called me at home late last evening. All the blood test are tomorrow morning, 24 hr urine after that. Fingers crossed. Not sure where this road leads.

Sporadic sounds a lot another term they often use when they cannot find the cause of “whatever”, and the simply call it Idiopathic - I nickname it the Idiot’s Path to Nowhere, as they know not what is going on and then just treat the symptoms. I currently have a boyfriend who had a dirt biking accident and he was in the ER and they told him he needed to get looked at ASAP as his “adrenals were trashed” once he got home. He also had a broken right wrist and his lungs had deep bruising a couple of broken ribs. We have been waiting five months to get an answer to what is causing his mass on his right adrenal gland, whether it is due to hormones and/or a malignancy. His surgeon will then tell him his options. He also has found out that he has 7 nodules around his thyroid and those need to be biopsied next week. We continue to do research as I am one who is always dealing with chronic health issues and therefore I do no mind doing so at all. My boyfriend is doing his best to stay positive, but medical issues are something he has a hard time with as he is the first to admit he is a hypochondriac. So the less He knows the better. He just lets me help out by doing the research and I pass on the info to him so he can process the information first, then we can discuss any questions he has. He was a commercial trucker for nearly 40 years, so there IS a good chance his adrenal mass IS hormonal. So thanks to all of you who are sharing your stories on this TH-cam channel as it truly is very rare. Luckily we live in a large city and we have an Endourologist who is able to take care of him now. Best wishes to full recoveries - even if it does make a second appearance!! It can be so hard while waiting for a doctor to finally make a diagnosis, thus I applaud all of you who kept seeking help!!

Going though this with our 26 yr old daughter now. First visit to the FP resulted in the typical suggestion that this was a young woman upset about Covid,so an anxiolytic was suggested. She’d been having limb trembling every day for months, arrhythmias including SVT, waves of adrenaline rushes,panic attacks, paroxysmal diastolic HTN, frequent headaches, shortness of breath and now chest pain. Awful. Luckily I am a persistent RN and have basically made all care suggestions so far- isn’t that pathetic? Our family doctor is clearly humouring me. Even knowing my husband’s brother has MEN 1 hasn’t impressed her. I will not give up,ever. Waiting on urine metanephrine results.

Thank you for sharing x

Your poor mum 😢 it sounds like she suffered for a long time

Thank you for sharing and I greatly appreciate the reminder to be your own advocate...you know your body! I really needed to hear that.

Thanks for sharing! I’d like to share my story in hopes it can help someone else . I had most of the Pheochromocytoma symptoms but didn’t actually have one. So this video is for anyone surfing with those symptoms but they can’t find the tumor!! m.th-cam.com/video/JWdqSpvvxmw/w-d-xo.html

Thanks for sharing! I’d like to share my story in hopes it can help someone else . I had most of the Pheochromocytoma symptoms but didn’t actually have one. So this video is for anyone surfing with those symptoms but they can’t find the tumor!! m.th-cam.com/video/JWdqSpvvxmw/w-d-xo.html

Thanks for sharing! I’d like to share my story in hopes it can help someone else . I had most of the Pheochromocytoma symptoms but didn’t actually have one. So this video is for anyone surfing with those symptoms but they can’t find the tumor!! m.th-cam.com/video/JWdqSpvvxmw/w-d-xo.html

Thanks for sharing! I’d like to share my story in hopes it can help someone else . I had most of the Pheochromocytoma symptoms but didn’t actually have one. So this video is for anyone surfing with those symptoms but they can’t find the tumor!! m.th-cam.com/video/JWdqSpvvxmw/w-d-xo.html

My symptoms were very similar to yours, but maybe not as frequent and a bit less severe. I have a 6.5 cm tumor in the right adrenal. It was also sporadic and they happened to find it while doing a CT scan to see if I had a pancreatic cyst, which it turned out I didn't. Good catch! Your video has been very helpful Thanks. As I wait to see a specialist to schedule a laparoscopic surgery, I anticipate less post-operative complications as a result.

Thank you for sharing. I too live without my thyroid and it's awful. Exhausted 24/7

The most insulting part is how the doctors insinuate it’s “ all in your head” simply because they couldn’t be bothered to investigate beyond normal illnesses. So you already feel like crap and then you’re made to feel crazy. Mine was so large I lost my kidney as well. And they nicked my spleen during surgery so out it came too.

excellent video

you are champ

You are beautiful, you are champ. God bless you.

Lisa, I’ve just been diagnosed with this after being told my symptoms were due to menopause too. They are just now scheduling me to start tears/scans etc after doing my blood work and matching my symptoms my Rhuematoid Arthritic dr stated he has other patients doing exactly what I’m doing and it turned out to be this. I’ve been have sweats all the time, increased blood pressure and heart rate. Attacks that last 10-15 min where I have a huge adrenaline rush hit my body. Face and hands start tingling. Swelling in my lips, throwing up (during attacks) increased hr, etc. I feel like I’m going to die. Afterwards I’m exhausted because of it all. How is your mom? I would love to talk with her as I’m starting this journey and I’m afraid. I’m 51 and I have so much to live for.

I’ve been having severe sweating, I’ve been having these attacks where I have a huge adrenaline rush that hits me fast and hard where I start throwing up, severe sweating where I’m soaked from head to toe, heart beating so fast, sweating in my lips,. The attacks last for 10-15 min. I feel like I’m going to die. I also have increase in blood pressure and heart rate. I’m extremely tired. I cannot do anything physical. My Rheumatoid Arthritic dr is the one who believes I have pheochromocytoma. This has been the scariest time of my life. I’m not beginning tests before they will do any treatments etc. I’m so very scared. I’m 51. I want to live but at times feel I may not make it. 😢

Pheochromocytoma's are scary, january 2019 i had adrenalectomy on the right hand side, i experienced similar issues pre surgery, my blood pressure got up to 280/ i had to have 30 pills a day to lower blood pressure enough to operate, i was told pretty much the same pre and post op. I was rold no genetic markers present, but was just random, no catalyst, you not alone we do exist, somewhat near and far between the low occurence rate spreds us out across the world, i've met one other person in real life that had one, i don't even know anyone who knows anyone that heard of a guy that has/had one, hopefully more research in that area happens, stay strong, keep up your test, ask as many questions that come to mind it's the best way to find out info, stay positive and best wishes for the future, hope you never have to experience that again, some do, most don't, all pheo survivers are lucky to be alive, everytime a story of one is told it is full of unpleasant, extreme, unnatural sounding occurrences, hope you future brings you what you want and you stay happy and healthy for many years to come.

Doctors are stupid

Where did you have surgery as i was dx in 2008 but never treated and severly ill now with dizziness fatigue kidney failure stroke.heart rate prob high bp. The usual other symptoms.high catecholomines . as the dr who dx me left and none of the others know what it is

Great video just need to speak louder. Im a nursing student i use story's to help me pass thank you and good luck on your journey