Pheochromocytoma Attacks and More: Educational Video And Sharing My Personal Story
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- เผยแพร่เมื่อ 16 พ.ค. 2021
- An amazing TH-cam friend (subscriber), recently asked what happens during a Pheochromocytoma attack? I wanted to sit down to explain a little more, what is a Pheochromocytoma? I also talk a bit about the Adrenal glands and Adrenal Insufficiency. What is an attack? I go into as many symptoms as I can with as much detail as possible (with my foggy brain).
Still have questions? No worries, just leave them in the comments below! I welcome ALL questions about Pheochromocytoma.
Defining and Explaining a Pheo/ hormone and adrenal gland information:
Adrenal Disease Resources: winslowedixon.wordpress.com/a...
Adrenal Alternatives Foundation: adrenalalternatives.com/
Pheo and ParaFoundation pheopara.org/education/pheoch...
John Hopkins: www.hopkinsmedicine.org/healt...
National Adrenal Disease Foundation: www.nadf.us/
Support Groups:
Pheochromocytoma and Paraganglioma Support Group:
/ pheoparasupportgroup
Women's Adrenal Insufficiency Support
/ 1550015248576508
Welcome Chronically Hopeful, it is an honor to have you with us sweet friend. I am just a twenty something year old girl learning to thrive despite being medically complex with more rare diseases than normal ones.
I am extremely passionate about educating others, letting them know they aren’t alone, and providing support. I like to try to do a couple videos a month with a more focused topic.
I would LOVE to connect with you. Check out my social media!
Instagram: / chronicallyhopeful14
Facebook page : chronicallyh...
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Thank you for sharing, I have a lot of the same symptoms. I’m getting a CT scan in a couple days to see if I have pheochromocytoma. Your video has really helped
I can’t explain how much I love your personality. Thank you for sharing your life and helping us navigate this health journey. Thank you 🙏🏼 healing hugs
I am a medical student; thank you so much for sharing your story. You are a beautiful person. All the best to you.
Thank you from the bottom of my heart for taking the time to watch! Rare disease is an important element of health care. I am an extremely unique presentation medically. I've been told by most that they haven't encountered anybody quite like me. In addition to my rare diseases, we're looking into if I am a chimera. So it's all quite interesting at least in my opinion. It means so much that you took the time to learn about this. I really think education empowers all of us. Thank you from the bottom of my heart for your compassionate comment. Thank you for your diligence, hard work, and all you do. May I ask what you are studying/planning on doing?
Thank you 🙂
Thank you for such thorough explanations. I can relate to the depression aspect. I went through severe depression from childhood through age 20 (when I got put on Prozac), and tried to hurt myself multiple times. Please know you can post to Chronic Readers (CR) on Facebook *any* time you are struggling with any aspect of your health issues/disabilities.
I wanted to say, first of all my apologizes for not responding sooner. I am so deeply sorry, I had an issue with the channel this morning and needed sadly to take care of that before responding to your comment. Please know my heart wanted to respond to you first. Thank you with all my heart for taking the time to watch this and comment!! It is so wonderful to relate! My pleasure. It was kinda difficult just because finding the right words to describe it the best to my ability was challenging because as you see so much goes on and I get so drained from it all. I am deeply sorry with all my heart for the depression you have endured. I validate your journey and emotions. Please know it is NEVER even a tiny bit your fault. I hope you understand, even a little, you are an amazing individual beyond words, with a beautiful fabulous soul, and you have a purpose. Thank you, with all my heart for the resource. I will be saving it, but not just for me. Also for future reference for others! Have a lovely weekend.
Thankyou for educating me on pheo ! Great video
Thank you so much from the bottom of my heart for watching. It ended up being much longer than my guess lol but I think it can potentially help someone.
It definitely will , I'm not so ignorant about it now and I'm sure someone who has just been diagnosed will find this extremely helpful and reassuring 💖
I’m 34 years old and I’ve been paralyzed from a gun shooting accident in 2003, I was just diagnosed with pheo two weeks ago after having symptoms of it for the last 7 years. Honestly, after all the surgeries and things I’ve been through I’m just scared. Im happy I have answers to the Hell I’ve been through but I’m also scared of the battle ahead
Hey, it's so nice to meet you. I'm so sorry under these circumstances. Please feel free to dm Me on Instagram if you need anything. It is extremely scary. I am now metastatic and we aren't sure if I have another cancer. I understand like having medical stuff like hanging over your head. And I'm so sorry that you're going through this. This. You're not alone. Please make sure that your surgeon knows enough about the tumor before removing. I do have a lot of regrets with mine and so does my family. I hope with all my heart that you're feeling decent today and you're able to enjoy a little something. You're in my thoughts and prayers. Sending positive vibes
I am also diagnosed with Paraganglioma.
Yes Bible words gave me so much relief.
How are you doing?
Thank you for sharing your story. My sister was diagnosed w/ Pheochromocytoma recently. We are lost. Please, pray for our family.
I would highly recommend checking out the support! Please just let me know if you need anything!
Well it is usually benign and once it is removed it will take some time to get back to normal.
Hello! Thanks for your video and for raising awareness! Please tell me more about your symptoms, because recently I'm also having severe anxiety attacks and heart palpitations. Do you get your symptoms exacerbated after eating high amounts of sugar? I did some tests and it wasn't reactive hypoglycemia or something. Sometimes I feel like I can eat sugar, other times I'm not. It's a kind of an episodic thing. Also, what about visual blurring? My vision would get extremely blurry when I have some attacks. It also gets bloodshot, and I'm seeing halos around lights. Thanks in advance! Get well soon 🙏
Hi! I am so sorry it took so long for me to respond. I just saw the comment. Of course! I'll respond here to your questions, but also feel free to DM me on Instagram. I do get sick if I eat too much sugar. It could be linked because it can impact sugars. I do get blurry vision at times not very often. I am not positive what is the cause of the eye stuff. Mine swell too but I know they have also with kidney issues.
Thanks for this video. Very informative. I have had these attacks over two years and I'm convinced I have a pheo. They are so hard to deal with and I feel so scared and alone as they happen but then I go quickly back to normal. You are so spot on about the logic going out of the window. My serum noradrenaline is 3x elevated but metanephrines are normal but I've got a small tumour in my left adrenal so in the process of diagnosis. How do you cope with attacks when out and about?
My pleasure. Thank you so much from the bottom of my heart for taking the time to watch this video. Are you able to obtain testing? Do you have a Doctor who's actually listening to you? Please be very careful. I am always willing to talk to anybody especially about pheo because I know a lot about it and it's a difficult thing to live with. I've had a lot going on these past few days so it's taking me a lot longer to respond than usual but please feel free to drop me even a private message either on the Facebook or instagram.
To be perfectly honest with you currently I'm also bed bound at times. I used to be out and about with the tax and honestly I would make like a kit to bring with me. I can look around to see I might actually have some videos or like list of what I was bringing.
Come back tomorrow and I will have something up around 10:00 on different things to bring out. I hope you're having a fantastic day thank you so much again for watching my video. Sending positive vibes lots of spoons and prayers
@@chronicallyhopeful5407 Thank you so much for your reply. Yes I have a nice doctor and am having testing in fact tomorrow I get my blood results back. Another MRI to follow. I will PM you on Facebook. Very grateful for your videos 🙏
Thank you for your video,I wish my doctor would take mine more seriously,I’ve been diagnosed 10 + years the size of a egg & I have all the symptoms
My pleasure. How are you doing? How can I best support you? Pheochromocytoma is a difficult diagnosis. I believe there's still a lot we don't know/understand about it in general. I hope with all my heart you are having a good day
Why are they not removing yours? I feel for you. I had a Pheo for at least 8 years. It was removed in February.
Thinking of you.
Wow I have all same symptoms
I have 2 masses 1 on left and on right
My Heart Rate at Rest is always high like 100 to 130 or so
And Changes Within minutes
Same With Blood Pressure
130/110 or 235/105
Or 155/45 all By Sudden
And I'm so weak
Itching blisters as well hair loss but my heart has been damaged
And I Cant Handle any heat I need a fan no stop and feel I have acid under my skin
The sweat at times burned my face
Thank You For Ur Videos Its Helped Me So Much.
God Bless You 😊🙏 💕
So deeply sorry. I just saw this. I'm so deeply sorry with all my heart you are enduring this. Feel free to dm me on Instagram. I hope you get answers and help soon.
@@chronicallyhopeful5407 You Are The Sweetest Person Thank You Lovely Xoxo 🥰🙏💜🕯🌈💕🌼🕊
@@ShantiDawning Thank you. I hope with all my heart that you are having a great day
Go online to Request-a-test and buy your own test. Plasma metanephrines is the true test. That is all you need.
There are so few videos on here from personal experiences. Glad to see one, i am under investigation for pheo at the moment. Keep getting attacks that feel like adrenalin dumps, my norepinepherin levels were raised twice on blood. Keep having rises in heart rate past 200 beats a minute and high blood pressure, pallor, shakiness and blotchy rashes and temps that they can't find the cause for 😒 sending you positive vibes ❤ also a CT scan didnt show anything up annoyingly 🤦♀️
I am so sorry it took so long for me to respond. SO true, which is one of many reasons I wanted to share. How's the work up going? I know it isn't easy. You are doing an amazing job even though it might not feel that way. If you need anything let me know but also reach out to the support group if you haven't already. Do NOT put too much into the CT. My last one was seen first 4 ish years ago, than missed on at least a dozen -two dozen scans. I have been extremely sick. They CT me last May told me oh everything is good to go. Got a call once I left the hospital that they think I have a tumor that they aren't familiar with. Next CT was the only one that caught it. So many factors play into this. The tumors can hide and are extremely hard to find. Test aren't always ordered or done or read correctly. KEEP PUSHING for answers. You deserve them!!!!
@@chronicallyhopeful5407 ahh dont worry about the response time! So finally saw the endocrine doctor yesterday hes gonna run some more bloods and doing a 24hr urine collection, it was just so nice to not be told its all down to my weight/mental health for a change and he was like well anxiety can't cause increases like that which was a change to hear x i can't remember the group you mentioned but im also part of a facebook group for pheo/paras that are really helpful x
@@xxSciFiGirlxx hi SciFiGirl ... can you share a update with us?
@@meesa8468 not much to update im afraid, been seen by 2 different endocronlologist lastest tests came back normal so im waiting for a follow up next 3 weeks. Currently having issues with heart rate and blood pressure that they can't do much about yet unless they rule it in or out x
@@xxSciFiGirlxx sending good thoughts your way. I understand well tbe frustration when you know something is seriously wrong and yet you have no answers and difficult symptoms.
I wish I'd never heard the term pheo being tossed around (they then found a adrenal mass when they looked specifically for it during a e.r. medical crisis, first I'd heard of it). Somehow everyone determined that it can't be the problem. 3 years of progressive symptoms later and think I'm finally on track toward real answers.
I hope you find your answers. Sending hugs
How are you feeling now? Did you have surgery?
Do your attacks come on randomly then other times you’re fine? and do you get depression attacks as well? I feel as if I might have this. My DHEA level is 656 and I have so many symptoms I also have BEATING heart that goes so fast ( diagnosed with tachycardia which I never had before) when this happens and it’ll happen for days with crippling anxiety and sometimes I get crippling depression attacks and I had brain fog for like a week straight so bad. The anxiety attacks and depression attacks are INSANE. They happen randomly too! How high were your DHEA s levels?? Was your tumor shown in the MRI I’m guessing?
So deeply sorry, I just saw this. I will respond a little later today.
First of all, I am deeply sorry with all my heart that I missed this! YES!! It is extremely common to be totally normal than to basically feel you are extremely sick. Sometimes it kinda feels like you’ve been hit by a bus, other times it can feel like you might die. I do want to also point out I have been told I have a lot of other illnesses with it. So I am not always saying doing 100% awesome/ normal (What is normal LOL)than crash. For me I can have another illness act up than crash.
Please feel free to DM me on instagram too. You are not alone. Getting a diagnosis is a long hard process. The experts I am finally with estimate I have had two. This last one gave me more issues and it’s been estimated that I had it from 2013-2020. This is typical.
To be perfectly honest, they never ran a DHEA test. Obtaining the correct testing can be challenging and this is one of many things I have immensely struggled with. I have hope now of getting the correct testing, but I am of course trying to be patient with them. I began not long ago with a new Pheo team.
The anxiety and depression attacks are so extremly difficult. If you need tips we can definitely talk. Additionally I am planning on doing a video dedicated to mental Health. It's inspired by a lot of what I'm going through, obviously chronic illnesses Pheochromocytoma, medical gas lighting, mental health stuff and just a bunch of things. My hope is that it's really helpful but we'll see.
I do want to first tell you it was seen on a scan and then not seen then seen again. So don't want you to assume just because a scan does not pick it up but you do not have it. It is very difficult to find.
First it was seen on a CT years ago. Last year an MRI with contrast picked it up. It was missed on so many CAT scans and then my last CAT scan saw it right before surgery that was it.
Thank you from the bottom of my heart for your comment. I do hope this is a little bit helpful. Please feel free to ask other questions. I hope you have a fabulous day!!
I have this. Bp 300 over 170 or 200 over 240 heart rate from.40 to 160
Mood swings fatigue paranoia catecholomines strokes but untreated.i also have cpvt .
Hi. My apologies for missing this. Feel free to dm me on Instagram for a faster response. Do you know how I can help?
What about pvcs? Heart feels like it's skipping beats?
Can you explain your leg pain? I’m still in a journey of diagnosis, but so much of what you describe with anxiety and sweating has taken over my life the past year. But what stood out to me was the leg pain you mentioned - I’ve had leg pain that has drastically impacted my ability to keep up with the physical activity I love so much and no one can get to the source of it. I just wonder if yours is a similar feeling to mine?
Hey, I hope you are as well as possible. Please make sure to get tested if you have any suspicion. I would best describe it as cramping at times, sometimes it can be sharp, and very heavy. I’ve had an extreme amount of weakness. For symptom like that I feel like multiple illnesses probably play into it. I hope that helps a little. Please let me know if you have any other questions. Always feel free to reach out to me privately on Instagram if you need anything as well. I hope you have a lovely day
@@chronicallyhopeful5407 thank you so much for your response, I know it takes a lot when you’re going through so much. I had a 24hr urine test with some higher levels but nothing wildly out of range. As grateful as I am for a good test, I sure wish I could get to the bottom of all of this!
@@aly5117 you need to do urine and blood. I hope with all my heart you get compassionate care. It can be Difficult to get a diagnosis for rare in general.
Hi i am so scared I have this getting tested now and I am hoping this isnt a death sentence. I just got lucky with catching melanoma on my back early and cut off. Now dealing with this i am just so scared.
I'm so deeply sorry with all my heart. It's an extremely difficult diagnosis. Of course! I'd be more worried if you weren't scared. How are you holding up? When will you have more results? Is there anything I can do to best support you during this time?
I have never felt more understood. My Dr.'s are in the process of tests but they found the tumor. I'm exhausted. I'm super constipated and have attacks when I go.
Sorry I haven't been super active on TH-cam. I am so deeply sorry that you understand but I am happy that you feel understood. It's so hard to endure chronic illness but that feeling of someone else getting it and feeling a little more normal is freeing. It is exhausting! I know it's too much at times, but you are doing amazing! I am hoping and praying that you get the compassionate care you deserve. We are all in this together, welcome to the crew ❤️ I go through constipation and diarrhea. Strange things trigger attacks
Hello! Hope you're feeling fine and healthy!
Please, can anybody say something abou foods that are safe to eat if you have pheo? Thank you so much!
Hi, I hope you're having a fantastic day. The general guidelines are as follows:Low Sodium, Low Tyramine, and Low Refined Sugar. Please let me know if you have further questions. Feel free to also visit the Facebook support group. Thank you with all my heart for your comment
@@chronicallyhopeful5407 thank you so much, great and useful advice 😊 wish you the best!
@@MesecJeSamPlovio my pleasure. Thank you so very much. Happy new years!
@@chronicallyhopeful5407 to you too! No troubles in upcoming months and better health for all of us 😊
Did you have skin problems with the pheo? Like paleness, cold feet, like not enough blood in the skin?
Yes. Those and flushing. Many things can cause skin issues of course. Not enough blood is a blood flow issue. I think Pheo contributed to my blood circulation issues but I do have POTS as well.
@@chronicallyhopeful5407 I was diagnosed with pots and phaeo but it is catecholomine polymorphic ventricular tachycardia .cpvt.dx by cardiologist.but he is no longer in uk now but the US. Dr choi
@@florrie8767 I'm so deeply sorry with all my heart. Do you have a Dr now? How are you doing?
Hi, can you possibly explain what the sweat smells like?
It's extremely gross. Personally it keeps changing every few weeks. I'm not sure why yet.
@@chronicallyhopeful5407 ok, thanks. I don't think I have pheochromocytoma, but my sweat has changed and I don't know why. All the best to you! 🤗
@@chronicallyhopeful5407 Did you notice that urine also smells differently? In my case urine smells similar to sweat.
At what speed does this tumor grows?
They typically grow very slowly. They can be in the body for years without somebody noticing
@@chronicallyhopeful5407 Thanks for the reply. 😊
My pleasure! Thank you so much for asking. I hope you are doing well and having a lovely day 🥰
It’s a PHEO pronounced “FEE-O” not THEO.