If you've not suffered an Adrenal Insufficiency/Addison's Crisis on a serious level, I hope you never will and there's a chance you might live a long life without ever experiencing a crisis, but you need to recognize the difference between the warning signs of an impending crisis so you can start the battle against it and so you can know when you are just going to need to trust others to get you through the worst so you can have your second chance.
Subtle Symptoms might include:
1. Slight Stumbles: I am very irritated when I stumble. It is usually a small stumble, such as the tip of my foot catching the tile at the grout line, which is nearly non-existent, but I guess my feet are dragging more than I realize. It took me a while to figure out that this was one of the very early signs of my body needing more Hydrocortisone, fast. If I am not aware, the next step might mean a fall.
2. Double Vision: I will usually have a couple of days of this symptom to where I see double and triple, it's another warning symptom or a sign that I've over-done things and need extra meds and more fluids.
3. Shaking: Since I am susceptible to low blood sugar and many Addisonians will have dips in their blood sugar, I can get very shaky without much notice. The problem with this symptom as an Addisonian is that it taxes your system and increases your need for more Hydrocortisone.
4. Feeling Sluggish: Sometimes it feels as if my body is a lead weight and it is difficult to move each limb. The danger with this symptom is that it is most often means that my body is beginning to come down with a viral or bacterial infection of some sort. If I start feeling worn down on a marked level, I double my meds and wait to see what it is that I've caught...usually a cold. If needed, I get started on a round of anti-biotics.
5. Racing Heartbeat: Addison's has officially given me the side issue having regular tachycardia. If something happens, even a scare or an angry moment when you normally have a raised heartbeat, the problem is...my heartrate will not come down with time or with taking some deep breaths. The heartrate has no signals in my body (cortisol/adrenaline) that will prompt it to slow down. I have a beta blocker that is prescribed for this side effect of Addison's and it helps a lot, but I must be careful because too much of this medicine can bring my blood pressure too low and that puts me between a rock and a hard place when I'm enduring a racing heartrate.
6. Nausea - Stomach / Back Cramps: For me, these are frequent symptoms that I must battle and that are a part of this disease. I don't have any problem keep on weight because I absolutely REFUSE to vomit, unless it's out of my control. I actually work to keep extra weight on me because I've lost 18 pounds in less than a week's stay in the hospital. I'll stay a little plump because I've experience the wasting syndrome due to Addison's first-hand. It was scary. For nausea, I take Zolfran, a miracle drug. I don't take it unless my nauseousness gets unbearable.
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Several times I have experienced the darkness of a full Addisonian Crisis, and I have been in this serious life-threatening position several times simply because my body had become VERY ILL with Addison's before I was diagnosed; therefore, it took a long time to get stabilized.
Also, I've had other surgeries, such as cervical spine reconstruction that has left me with metal plates, screws and bolts that sometimes rub against the tissue in which it's enclosed and the ends of the screws sometime visibly press against my skin. Of course, this means there is swelling, pain, and stress upon my body which is NOT a good situation for a person with Addison's Disease. If you have complications that aggravate your Adrenal Insufficiency condition, try to be aware of these so you can be prepared as they create trouble. You can't stop these things from happening, but you can be prepared to react faster when they occur.
It takes some meaty experience to learn how your body operates with severe Adrenal problems. My adrenals are shot...they are withered little bits of glands taking up space in my body, not earning their keep. These glands are necessary for a person to live. In the not too distant past, this disease meant imminent death. Today, we have synthetic replacement, but the meds themselves can cause serious complications over time.
This disease is not to be taken lightly. As for replacement therapy, my synthetic replacement must be perfectly administered for me to not have problems and this is not always possible. Perfection with our bodies is a dream-state. But, we can be on a schedule, take our meds as required, but the trick is to recognize additional symptoms that you are in trouble before you are too far gone and unable to do anything about it yourself.
During a FULL crisis, I experience these symptoms:
1. Extreme weakness and lethargy: I can barely hold my eyes open because my blood pressure is dipping to the low point of barely being able to be registered by medical personnel.
2. Increased Heartrate: As my blood pressure falls, my heart rate usually increases significantly because it's trying to get blood pumping through the vessels that are weakly moving the blood along.
3. Slurring: As an Addison's Crisis is well underway, I may be able to initially say, "I'm in trouble, get my meds," or "I am not doing well." If someone is around, I at least try to alert them to my oncoming symptoms before I'm unable to communicate.
4. Dizziness: This kind of goes with the lethargy. But, I can first experience a huge wave of dizziness that doesn't go away, then everything else follows. These are dangerous moments because they put me immediately into a position of not being able to walk, talk, etc., so I cannot express my dire situation to others who think I'm simply taking a nap. It can be extremely frustrating since you'd like to scream out that you're in trouble.
5. Gasping for air: This symptom comes after I am in such bad trouble that I am beginning to have moments that cause hospital monitors to register a Code Blue. The air seems to exit the lungs and I literally cannot draw in another breath without waiting an excruciating long period of time, thinking that this is it, I can't breathe, and I struggle terribly. Fortunately, I've been given multiple second-chances...pure miracles. I am a fighter, but I don't know if that really helps you to live longer, sometimes it's just not our time to go yet. Regardless, for this symptom, you do NOT want to hit this stage.
By the time I've hit severe crisis symptoms, I am beyond being nauseated. There are more pressing symptoms that take charge of my body. I remain coherent for a long time, usually even as my body is unable to respond or to move as I want it to. It's like you are trapped, but a person living with someone with Addison's should be VERY AWARE that the person going into an Addisonian Crisis may look unconscious, but they might very well be fully able to hear everything you are saying and to hear all that is going on around them.
After having my husband was forced to call 911 a few times and after I've been in this state of going comatose, I would hear all of the hustle and bustle around me, even the paramedics voices sounding alarmed as they realized my vitals were failing and I could not tell them that I could hear everything. I wanted them to still keep me posted...to TELL ME what they were doing to me, if possible, and to remember that I was still in there, somewhere.
At home, most often, I am aware enough when I'm going downhill to quickly get a double dose into my system as I am headed into a quick Addisonian downfall. I actually begin with taking my pills and I sit down, relax into the symptoms instead of fighting them and the medicine kicks in to help pull me out of it. I've done this so many times that it's not possible to count how often I'd been in this situation. My doctor tells me that my body makes it extremely difficult to regulate Addison's disease and we all know, if you have this condition, there is NO MONITOR that will tell you your levels in advance so you can take medicine more leisurely. For us, we must KNOW our bodies and learn to recognize the symptoms approaching.
It's been a few years since I've been in the hospital because of an Addisonian Crisis. Now, I've been hospitalized for other conditions and have had surgeries that have CREATED an Addison's issue. Yes, I'll be IN THE HOSPITAL and my file will be marked largely with this condition, and I often find that medical staff still does not really grasp the concept of how fast an Addisonian can crash and hit the cardio-pulmonary shock stage. Most medical personnel have never seen an Addisonian crisis in action, so they can't imagine this happening except to a traumatically injured victim. It doesn't seem possible for it to happen to a patient who looks fairly okay, for the moment. For an Addisonian, that can change in a snap. You feel "funny" one moment and the next you are unconscious and dying. For us, it happens. I have been that patient who has provided an education for many doctors and residents.
I've been in the hospital, in the middle of an Addison's Crisis and the head Endocrinologist rushes his residents to my room STAT and they all stand at the foot of my hospital bed observing me in a state worse than a quadra-pelagic as I am unable to move my body, I can't sit up, I'm slumping over in the bed because the nursing staff has not even recognized how quickly I've deteriorated; my body is so far gone that I am unable to communicate. Worse, the rest of me, my insides, all of it is slowing down and about to call it quits.
The good part about Addison's, unlike the quara-pelagic that never has a second-chance, is that you have a chance to resume your ability to sit, stand, talk, and walk. That is...IF you live through the crisis.
They monitor my disappearing vitals, each recording it on their own tablet, then as they administer the injection, they stand and watch over the next 5-10 minutes as I am able to slowly pull myself back up into an upright sitting position with stabilizing vitals improving drastically, quickly before their eyes, and I'm able to finally talk, so I say, "Thank you, I really needed that." Before they leave my room, I'm taking sips of my water and am chatting with them about their questions.
That endocrinologist said to his residents, "That'll probably be first and last Addisonian Crisis of that severity that you'll ever see, but at least you'll have a better chance to recognize it."
Thank God I had an endocrinologist on staff who recognized the danger himself because I've sadly discovered that many endocrinologists do not understand how rapidly their patient will decline. They know it can happen from textbook knowledge, but the real world experience seems to be shocking to them or as if they can't believe they actually have an Addison's patient on their hands.
I've had several different episodes, but this particular terrible experience is one that I had DURING my hospital stay, and my file was fully recorded about this condition. I'd actually just had a serious cardio-thoracic surgery and was in an extremely dependent state with my body chopped to bits and a rib removed. I had a huge incision across my neck/thoracic area with drain tubes coming out the top of my shoulder with the drain line running a couple of feet into my body. Disturbing.
My body was under tremendous stress. The staff handled the surgery well, but they had not handled the stress doses properly and I was, of course, already "out of it" because I had just endured major surgery. My mother was alive during this time and she was in the room as I went into an obvious Addison's Crisis ---- but we'd already been telling the nursing staff that I needed my large stress dose. The next stress dose was not properly documented to be administed in the file, so the nurse said she had to contact the doctor. Of course, this caused precious seconds to tick away with me left untreated and declining further. The nurse did not understand that this was NOT a "let me go phone the doctor" kind of moment. (I wanted to make it clear that this was NOT the nurses' fault; the doctors should have put clear instructions for stress dosing and notes of clarity about the urgency needed, especially because I'd provided all the information before surgery in my pre-admissions appointment.) But, before the day was over, she'd never forget Addison's disease and she'd be in my room as nervous as heck, visibly shaken. I felt bad for her; she told me she'd been trying to respond as calmly as possible because she actually didn't know what to do, I was the first Addison's patient she'd ever had...even as a long-time nurse in Houston's notorious Medical Center.
No stress dose arrived and I was struggling to breathe and could not hold my eyes open for more than a few seconds at a time, but I could still hear everything going on around me. I prayed. My mom actually buzzed the nurse again, "We don't think you understand how urgent this is...we need the doctor now." Still we waited.
Finally, as I began to totally lose consciousness, my mother stepped out of the hospital room, into the hall, and began to yell at the nurse (VERY OUT OF CHARACTER FOR MY MOTHER) and she was yelling, among other things, "She's going to die; you have taken too long; we're going to lose her!" My mom was in a panic. I could no longer talk or do anything. I was in the Ragdoll state of existence.
That's the point where the head endocrinologist came bursting into the room and the rest you heard already. It was proof that this disease requires an extreme pro-active stance, you can't even think that being in the care of medical professionals is enough. If you end up like me, under harsh surgical conditions and dependent on others to provide life-saving treatment, then you might be in trouble if you don't have an advocate watching over you. On this day, my mother had been my advocate. Other times, numerous times, it was my husband.
But, my health is my business. Mainly, I am the one taking care of my condition and living a good life because I've learned to recognize various symptoms. I stay aware, if I don't, I pay the price and I've learned long ago to snap to it and to not think that I could depend on the doctors to keep me healthy because they can't do it. My daily health is solely my responsibility. And I take it very seriously. Then, I keep living to the fullest, without fear, and I savor every good moment that comes my way.
Didn't know a thing about Addison's before you and your blogs. Very enlightening. I hope your case is used to help teach all medical professionals more about it from the patient's viewpoint along with all the other invaluable information you can give.
ReplyDeleteHave you thought of giving lectures or something like that for them? I would think that would be very sought after information.
Good luck to you in your journey. Living life is all you can do...enjoy it to the fullest...I can see that you are. B.
Thank you, I had my first Adrenal Crisis this year, due to having taken high doses of Pred for years due to RA. I was certain I would die. That morning I was nauseous, by late afternoon I was being transferred to a major hospitals CCU. I really appreciate your sharing this. It will help others with this terrible disease. Thanks!
ReplyDeleteBrad
Brad - I appreciate your comment, we have a lot of readers, but not everyone makes comments. However, I also get a lot of emails that are very moving with people telling me about their very traumatic experiences with going into an Addisonian Crisis.
ReplyDeleteIt sounds as if things progressed with your crisis fairly rapidly, so you can see how scary it can be. I am so glad that you are okay. You lived through it and can tell others about your own experience and how your body felt going through the crisis and how your mental process and emotional process sorted through it all.
Thank you for the encouragement. I keep trying to relay my own personal experiences in the hopes that it might possibly help another or simply help them to know that they are not alone in facing challengings with this unique, rare disease.
I'd love to know more about your situation and how this disease has impacted your daily life. Til then, take care!!!!
Lana
Hi Lana,
DeleteSorry its been so long! I have more news to report! I had another crisis in December, and thanks to researching Addisons and reading your posts here, I knew what was happening, took a IM injection of Dexamethasone, called 911, and only spent 3 days in the hospital! Thanks again for your help!
Brad
And Beth, you are always so sweet. This disease is so rare that we can't even get a room full of people together with this disease in the Greater Houston area...to include Harris County which encompasses the city of Houston and many other surrounding cities and to include other surrounding counties...a huge radius and still the turn-out is about five people simply because the disease is so dang rare. That sometimes makes having this disease more difficult...without people to understand it, even most medical professionals have never dealt with this disease, it can feel very isolating and lonely because there's very few people to understand. But, I'd definitely speak in public about the issue...after I first peed in my pants. haha! But, I'd do it to help others. Thanks for always being a sweetheart.
ReplyDeleteLana
Brad --- that is big news...I am so sorry to hear that you went into a crisis, but I am more honored and touched than you can imagine that you feel as if reading my posts helped in any form, shape or fashion. The entire reason I began this blog was to lay it all on the line. I share everything that impacts me and this disease so that another person might really discover that they're not alone in this battle.
ReplyDeleteI could spew technical information all day and that's a great part of sharing, but to share the personal side of how we feel during an approaching crisis or how it feels in the midst of a full blown crisis is what we all need to know --- it's the information I had been craving, but could not find anything but a dry list. I wanted someone to write about what it felt like to actually GO THROUGH a crisis so I could compare what I was experiencing to them...I'm glad you did the injection, called 911 and got to the hospital. Sounds like you had a while to be stabilized.
If you ever feel like it, I'd love to hear about your crisis exxperiences. You can email me. You can do it in portions or all at once and take as long as you need. If you want me to publish your stories and personal experiences with an Addison's Crisis, I will. If not, we can just talk about what you went through. I would just like to know - we've got something deeply in common with Addison's disease. Having an Adrenal Insufficiency can sure put you in unusual situations. I feel for you and am saying my prayers that things are leveling out. I'd like to know how you are feeling now.
Thank you so much for your feedback, you've given me the push to get back to writing on my blog because sometimes it's hard to write about this topic that does indeed have a great hold on my life. It has made me feel great to know that it made a difference for you. I'm so glad you got help in time...
Lana
I know this is from so long ago but as you know our doctors only see one of us every five years. I think that you can't stress enough how you are the only person who is getting you through all of these days and its on us, the addisonians to be proactive (and family) ALL the time. My doctor was going to diagnose me as only Hashimotos thyroiditis and leave the (imho) me to die with my raging addisons disease. Thank god for resources like this which helped me to diagnose myself and get that ACTH test and following 100mg shot. My doctor still hasn't given my an emergency injection kit because he says "the only way to have a crisis is to forget a dose!" HA WOW shows what he knows and proves that I would in fact be dead if I didn't tell him to take a better took.
ReplyDeleteI still have not had a crisis but its only been two months and I never want to have one, post diagnosis. Because it sounds like a very rapid decline from feeling normal to being a ragdoll. Is the abdominal pain a sign for most? I started having a little bit of that earlier and took a few extra mgs of HC just in case because I have no idea how to dose myself. Until I learn I will just play it safe. At least I won't die overnight if i give myself Cushings.
Hi!
ReplyDeleteI am a 20 year old female and I was just diagnosed with Addison’s disease this past Fall. It has been a wild ride getting to know myself and this disease, and I have found your blog very helpful over the past few months. I was hoping to ask a few questions.
First, a very brief history on me...I have always had IBS and the majority of what my endocrinologist has classified as my Addison’s symptoms are GI related. I am very underweight and struggle relentlessly to gain. I have had three episodes where I have gotten very sick with diarrhea for days (like every 20 minutes for 6 days despite extra HC and Imodium) and have been very out of it and unable to keep my eyes open. I am wondering if you could describe stomach symptoms you experience when Addison’s is acting up so i could have a basis of comparison? Also, when you have gone into crisis does the extra HC immediately help or is it not always the perfect fix?
Also, how well do you feel on a day to day basis? I am very much ups and downs and I don’t know if this is normal? As in, should I be expecting to feel really good most of the time, or is it normal to be experiencing a stomach ache, low blood sugar, headache, etc out of the blue pretty regularly?
Thank you so much again for writing this blog…it’s truly a blessing and I have very much respect for you!
Maddie