What is an attack?
Episode. Catecholamine crisis. There’s a lot of names for these “attacks” as I like to call them.
Small moments of time where you feel as though you’re dying, whatever.
I’m here to explain first hand what it is, why we get them, and how to unfortunately live with them in some cases. In order to control them, we must understand them. I’ll even talk a bit about prevention, as much as they allow.
I have to warn you, I’m clearly not a doctor, I’m just someone who’s lived with this disease long enough to have stacked up a bit of knowledge on the subject. Please talk to your doctor about medications, and any questions related to your personal situation.
Perhaps your friends don’t get it, or your family wants to understand, or even your doctor needs you to explain what it feels like. It’s sometimes hard to articulate what happens during the famous “pheochromocytoma attack”.
But first…
Let me break it down
Having pheochromocytoma means you have a tumor or tumor(s) that secrete all sorts of adrenaline hormones, wrecking havoc in your body.
Your body is literally under attack for a sudden period of time, caused by the tumors releasing something called catecholamines- which is essentially hormones (adrenaline). Everyone’s body makes these hormones, we need them to live, but having TOO much makes you feel….. like s@*t. Imagine having a grenade in your body, one that can explode at any given time for no reason. Leaving you powerless to the symptoms that are about to take over for 10-45mins. Sometimes even longer.
Some people might find that there are triggers that set off their attacks, but i’ll touch on that later.
What does an attack feel like?
Well, having a burst of adrenaline doesn’t make you feel like going jogging despite how it may sound. It actually makes you extremely sick. Why? Because these hormones directly affect your blood pressure, your heart rate, and in turn makes you feel like everything will explode during the release of this adrenaline. When your body goes from being perfectly fine, to all of a sudden being assaulted with every symptom in the book, it’s a shock to the system.
Sudden releases of these catecholamines not only elevates the blood pressure, but also causes disturbing heart palpitations.
Leaving most people feeling a sudden and severe pressure in their brain, chest pain due to the rapid HR, followed by instant nausea and vomiting. I’m leaving out the sudden feeling of inescapable heat, shaking or vibrating feeling, profuse sweating, blurred vision, seizure-like movements, and inability to control any of it.
And yes, this is an everyday part of this disease. For some people happening SEVERAL times per day.
I mentioned earlier there are triggers, most of you are probably saying “well don’t trigger it and you’ll be good!” Right. I’ll stop brushing my hair, taking a shower, washing dishes, walking, peeing, basically anything that requires any sort of heart elevation or just plain movement. Suddenly the plan to remove “triggers” doesn’t seem very effective. Anything can trigger an attack, there just happens to be more common ones that we can modify in our lifestyle to not make them worse.
Common triggers
-exercise
-heat
-alcohol
-certain foods
Here’s a list of foods to avoid that a lot of us use as a guide to prevent making our tumors even more angry. Any food high in tyramine should be avoided with this disease.
These foods often activate the release of catecholamines, making attacks more frequent and sometimes more intense.
If you know what triggers you, you can modify your lifestyle in an effort to manage the severity.
Most importantly, I mentioned earlier the big P, prevention. There is a way to be managed when you have pheochromocytoma, especially when you’re like me and it’s not going anywhere.
Here’s the thing, typically when you have a pheochromocytoma, it’s a tumor that is wreaking havoc while you await surgery – once you have the surgery, the symptoms and attacks go away.
But what about when you’re undiagnosed, or just simply waiting on surgery? What if you’re like me, and your pheo is cancerous, all over your body, and there’s no cure.
This is when management is so important.
I’ll take it from the top…
When you’re awaiting surgery, trying to get diagnosed, or in my case living with it every day- medications to control or block the symptoms is the MOST important form of management. Not only do these medications prevent the attacks, they lessen the severity and danger of them by lowering your heart rate and blood pressure to levels in which the attacks are more tolerable.
These are called alpha, and beta blockers. These are non negotiable if you are diagnosed with a pheo, you HAVE to be blocked with these medications. It’s extremely important to start the alpha blocker first, as a beta blocker on its own can further aggravate the tumors. Most people who suffer these symptoms will have a beta blocker prescribed first, but it’s important to discuss with your doctor the possibility of pheochromocytoma (no matter how rare) and request the trial of an alpha blocker FIRST.
There are different types of alpha and beta blockers, most commonly one will be prescribed called doxazosin (alpha) and metoprolol (beta) these work well long term and have limited side effects. I do well on these, and have for years.
Now what about the heavy hitters? Forget about long term management for a second, what about when you need to have surgery or are going for treatment and need something a little heavier to control what’s going to be a catecholamine ticking time bomb.
Meet our good friends Phenoxybenzamine, and metyrosine. Some doctors call these drugs an “overkill” and say that the standard alpha and beta blockers will be just fine, but I can speak from experience, when complications arise during your procedure, they’ll appreciate these extra helpers.
These two guys are not long term drugs, these are specifically to make surgery and radiotherapy treatments safer for the body.
Take it from me, someone who has had surgery with and without these drugs, they are NOT overkill. My first surgery I bled out, died, and was saved by drastic medical measures all of which could have been avoided with the proper technique and medications. My second surgery was a great success despite the number of tumors lurking inside because of the extra protection I had with these medications.
Now that we’ve discussed preventative measures….
What happens when the attacks come anyways?!?!
It will happen. There’s only so much prevention we can do, only so many foods we can cut out, they’ll still likely happen to an extent – perhaps not as aggressive, but still enough to knock you on your behind every once and a while.
So what does an OG pheo survivor do to survive these little monsters on the daily?
Well, I can tell you, I go into fighting action the MINUTE I get my first attack symptom. For me, that’s normally nausea. Followed by flushing (heat). The moment I start clamming up and feeling sick, I’m off to get my survival gear.
So in the event I’m starting my attack, here’s your survival guide:
Water
Anti nausea pill (Zofran)
Anti anxiety pill (Ativan)
Elevated legs
Meditation
Breathing
Lights out
Cold cloth
Rest
In that order, let me explain…
Water for taking your anti nausea and anti anxiety, those of which will prevent vomiting and help your body to slowly relax. It’s important to lay down right away, and elevate your legs any way you can. I find this helps with blood circulation and blood pressure, but what do I know? 😂
I’ve mastered a breathing technique that seems to help calm me down, which is the main point to this game- calming your body down. Inhale for a count of 5, exhale for a count of 7.
If you really want to relax and just be taken away into the attack abyss, save a few relaxing meditations from YouTube, here is one of my favorites. It just helps to release some tension and stress and guides you in your breathing to become more calm. If anything it distracts your mind and helps with the anxiety that is sure to creep up.
Lights off are always a good idea, as your eyes will be pretty sensitive at this point with that splitting headache you’re sure to have developed by now.
Last but not least, put a cold compress over your eyes. It will not only block out the light, but it helps with the sweating and flushing that may have kicked in.
Most importantly, time to rest. This process takes a lot out of a person, so it’s incredibly important to be kind to yourself and let yourself rest once it’s wrapping up. Your body will be exhausted, and it’s now time to re-boot with a well earned nap.
I hope even ONE of these tips can help you, but all of them combined work best. I remember with my first pheo I had no support, no knowledge, and would just feel death slowly coming to take me away as I laid on my cold bathroom floor shaking and violently vomiting my life away.
I would like to think I’ve come a long way since then, and so can you.
I sincerely just hope that this survival guide helps kick your tumors little butt one attack at a time.
Pheo vs Fabulous 
Thanks so much for all the insight. I follow all of your posts and think of you often. I’m sorry that you’re dealing with this pain daily. As for me, I haven’t had an attack like that in about 6 months.. do they come and go like that? That far in between? I had the vibrating feeling for a couple of weeks and the shaking feeling once. The vibrating feeling felt as though I had my phone on vibrate in my pocket.. weird. I have no known tumors at this time but had 2 removed in 2017.. that’s what makes me think they’re missing something. Anyways, again, thank you! 😘
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Thank you so much for all of the information. The attacks are exactly what I experience, and it’s scary. I can’t wait to get my surgery, and feel human again. I had begun to believe that feeling horrible was just something that was normal for me, and part of first menopause, then just aging. I am glad that there is a light at the end of this tunnel.
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Thanks so much for this useful post. I’m sorry you’re going through all this. My 3 24hr urine tests gave cobe back positive for pheo so now just had CR scan & waiting on that radioactive dye scan, so will be looking at next steps once I find out exactly where it/they are. My ‘episodes’ are kind of similar, I get flushing, tight chest, wheezy, feeling of doom, anxiety, body trembling & shaking. Hoping to find out soon where. Hugs x
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came* back* (clearly can’t type today)
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Thank you so very much. I really thought I was the only one out here living with this undiagnosed thing. Finally, my new doctor is listening. Testing has begun. I am so tired of the drenching sweats. So embarrassing. At a job I had, they told me I was disgusting. Mean, mean, mean girls. These cards we have been dealt with isn’t fair. As long we stick together and teach and support each other we can get through all this. Many Blessings.
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[…] Pheo Attack: Survival Guide […]
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I don’t know how old this post is but I wanted to let you know how much it helped me to not feel so alone.
I have had Generalized anxiety disorder my whole adult life. But this is very different.
The tumor was found incidentally when I had a CT scan for abdominal pain. Even though I had every symptom, it took 5 years for an Endocrinologist appointment to do a 24 hour urine and blood work to see there was something wrong.
It still is slow going. I had abnormal blood and urine tests 2 years ago and nothing was done.
I am 49 years old, I don’t smoke, drink, I am not overweight but due to a spike in my blood pressure (or so the doctors think) I had a stroke, it was in the mid cerebellum. It was mild and I don’t have any paralysis. I think of it almost as a blessing because I finally am being listened to after 5 years.
This attacks are debilitating and terrifying. I can’t think of anything to relate them to that I have ever experienced before.
I have all the same symptoms as you besides the vomiting which has occurred but not with every attack. Everything hurts all the time. My hurt races constantly due to the tumor and Alpha blocker I am taking.
I wish you the best, I hope by the time you are reading this, you have had your tumor removed and are having some relief in symptoms.
Thank you again for addressing this rare condition that no one seems to know anything about..
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Hi Dawn, I am so sad to hear that you’re having to experience anything close to this. I truly know how difficult it is, unfortunately in my case – it is metastatic and therefore terminal. I can no longer have surgery as intervention, I can only be managed with medications and different radiotherapies. I’m much better controlled now than I was in the last few years, thank you for asking.
It’s such a long road to diagnosis, I am so glad to hear that someone finally heard you. Please be sure that you’re also on an alpha blocker, you mentioned a beta, but those of us with Pheo have to be alpha blocked first for blood pressure, promise me you’ll look into that with your doctor.
I’m glad this post brought you some comfort, that is my intention. I’d like to bring comfort & knowledge to as many people possible. It is my absolute pleasure being able to help.
Please let me know how you are doing, I imagine you’ve probably had surgery by now (I’m hoping!) you will be in my thoughts.
Miranda 🤍
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[…] Pheo Attack: Survival Guide […]
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Omg, I don’t think I can do this. I can’t seem to get Into a positive mind set. I’m in awe of you. I still have my 24hr tests to do and further scans. My mum died of brain bleed. They believe she may have had one and now I have it.
I have been fighting for as long and telling doctors I’m dying, they kept saying its migraines and anxiety. Then they found a growth on adrenal gland.
How do you get past the angers towards medical professionals? I feel so bitter, I’m like a completely different person in body and mind. I want me back.
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First of all, you CAN do this. Let’s start with that. You can do anything. We are stronger than most people just based off the fact that we live in a constant state of panic and symptoms, THAT builds a resilience like no other. You will get into a different mindset, but it takes time. Fear is often the first to come, and then anger: like you mentioned. It’s hard, you have to feel it, go through the emotions. It’s a process of taking back control, finding doctors YOU said yes to, finding doctors who hear you, your gratitude for those good doctors will slowly rebuild your trust; and you will start seeing it differently. You will eventually be able to forgive, which I promise is better for your heart than it is for them. It’s for you. Remind yourself of that. It takes some self growth on our part and a lot of effort, but we get there. You will be a different person, a stronger person, a more intuitive person, and a more appreciative person. You will eventually see lift as this special gift that you feel only you can see; and you’ll wonder… “how am I the only one seeing this”
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[…] Pheo Attack: Survival Guide […]
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Thank you so much for this blog. My doctors are investigating a potential pheo. At first we all blamed the Adderall I’d been prescribed less than 6 months ago. But I stopped taking it and almost two weeks later had the worst episode yet. Thus far all my symptoms have been kind of scattered and isolated but they ALL hit at once and I felt absolutely terrible. That was kind of discouraging.
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[…] Pheo Attack: Survival Guide […]
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Does urine and sweat have odd smell when you have pheo/para?
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It sure does. It can get really strong and ‘stress sweat’ like – or it can be strong but not sweaty smelling, it’s hard to explain the smell. But yes. The urine I’m not so sure it would be attributed to the hormones but definitely the sweat.
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Thanks for quick answer 🙂
The odd smell of the sweat is present constantly or only during attacks?
Does odd test in mouth occur as well?
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You’re welcome ☺️
It can be persistent since the hormones circulate in the system longer than just during the episode. The taste in the mouth I do not recall but honestly everyone’s experience is different. Also there may be an overlap in conditions or a secondary symptom being caused.
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It can be persistent since the hormones circulate in the system longer than just during the episode. The taste in the mouth I do not recall but honestly everyone’s experience is different. Also there may be an overlap in conditions or a secondary symptom being caused.
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[…] Pheo Attack: Survival Guide […]
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I am a 44yr old female who my doctor has suspected I have Pheo for years. I tested abnormal levels of Catecholamines but not high enough to qualify for a PET Scan through insurance or with an endocrinologist. I have fibromyalgia and in order to retake the test and qualify for the scan I have to stop all pain and mood regulating drugs for at least 8 days. Without meds I feel worse then when I was in labor and can do nothing but cry in a ball. My parents were here to watch my kids while I went off my meds and they had the ideas of looking into how much a PET Scan costs. It is about 2-6,000 dollars and my folks decided that they would rather take the money out of their retirement than see me in that much pain (I am a lucky lady!) for a urine test that may or my not be conclusive. Long story short I have been blessed but I wanted to share what I discovered with your community to see if it could help anyone else in limbo waiting for a concrete diagnosis.
I discovered a website MDsave.com and they give you huge discounts on paying cash for medical procedures. I had to drive to a hospital 1 hour away, but the scan only cost $2,500 and my local NP was able to order it for me. (It would have been $6,000 at my local hospital) I am currently awaiting the results, but I will have a definitive answer (yes or no to pheo finally!!) now and without having to go through 8 days of torture!
Anyway MDsave.com is an awesome place to go to get discounts on medical procedures when insurance/specialist don’t believe you, be your own advocate!!!
Thanks for putting yourself out their to help people like me navigate the crappy medical system! Praying God will bless you and give you peace!
Lydia
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