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”.
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.
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.
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:
Anti nausea pill (Zofran)
Anti anxiety pill (Ativan)
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.