This story is fictional, but is based on stories of people that I have talked to.
Sally woke suddenly. She could feel the headache. She knew what it meant. She had had these before.
She reached on her night stand for her drugs. Taking 4 tablets, she put them in her mouth, took a mouth full of water and rolled over to try and go back to sleep.
She knew that getting this headache was going to mean a bad day ahead.
Sally looked at her clock. It was only 3am. If she could sleep till 7 and then take more drugs she would be fine she hoped.
She rolled over, praying the drugs would kick in soon. Wishing the headache would go away, and hoping the rest would not come. Deep down she knew it would, she knew she would spend the next two days fighting it off. There was no way Sally was going to go to THAT place again.
In a town a thousand miles from Sally, Dave woke. He knew that feeling. That urgency. He also knew what he had to do. He rolled over and looked at the clock. It was 5.10 in the morning. Dam, hopefully he could fix this.
He leant over to his bedside cabinet to get some tablets out of his bedside container. He took a drink. As he sipped his water he felt his wife stir beside him. He didn’t want to wake her because he knew it would worry her.
After he had swallowed the tablets, he gently sat up in bed. He didn’t have much time, but he knew, if he took it easy and didn’t try to rush this, he would make it.
He stood up and, leaning on the edge of the bed he walked to the end and around the foot of the bed. Not much further. He would make it.
Oh crap, he had to move faster or disaster would strike.
He got to the bathroom and sat on the toilet. The relief of making it was great. There had been times when he hadn’t.
He sat, thinking about the last 2 minutes. If the tablets stayed down for an hour, just an hour, then he knew he would be ok.
Then it hit. That all too familiar feeling of nausea. Time was not on his side.
Back in Sally’s bedroom she lay quiet. Then it struck. She looked at the clock and did a mental calculation. 3.30. Bugger, it was only half an hour. Not long enough. And with that though she leaned over the side of the bed and threw up.
Deep down she knew what she had to do, but she didn’t think it was that bad. She grabbed her phone, there should be someone in the world awake. “If I can just talk to them” she thought, they would tell her there was nothing really wrong, and she could just stay quiet for the day.
She opened her phone, swiped her pattern, and hit the facebook icon.
“I think I need help. Is anyone there?”
“yes, what’s wrong” came the typed response.
“I woke up with a headache half an hour ago. I took 20mg, but I have just thrown them up.”
“Do you have an emergency injection?” Sally was focusing hard on what the person talking to her was saying but she was having trouble reading the words properly. She couldn’t work out who was talking, and it didn’t matter. She was just grateful someone was there to answer her.
“No, they won’t give me one.”
“How long ago did you take the 20?”
“Abot hald an hour.” Sally was having trouble typing.
With that Sally dropped the phone and sped to the bathroom. She just managed to get her head in the bowl of the toilet before she threw up again.
Dave was sitting on the toilet of his ensuite wondering if he was going to need to throw up, or if he could get back to bed.
He stood up. The room moved around him as he fell against the wall. This was going to be a good one.
He got a bowl from the bathroom cabinet where Jane, his wife had insisted they keep one, and took it back to bed.
So far so good, the vomiting wasn’t starting, and there wasn’t the urgency of the toilet needs.
He half lay, half sat up in bed.
“Are you ok?” Jane rolled over to face him.
“Yes, I don’t feel great, but I will be ok.” He lied.
“Have you taken any more HC?”
“Yes, I just took 10mg.”
“Well make sure you still take your waking dose in half an hour.” And with that Jane rolled over. She knew Dave would be OK as long as he had taken extra meds. He hadn’t thrown up, so there was no need to panic.
She also knew she would not bet any more sleep tonight as she would be listening for all the signs.
“Sally, how are you?” Another group member had joined the conversation.
“I’ve just thrown up again.”
“You need to go to ER.” The new group member said it. Sara didn’t want to read it.
“I can’t. I know what will happen. They will leave me waiting for hours, and will ignore me. If I bed for steroids they will say I am drug seeking. They always do.”
“Sally, do you have someone who can advocate for you?”
“No, I will have to get a cab and go alone. But I can’t go. They won’t treat me. An idiot Dr wrote into my records that I had Munchausen’s!”
“Shit. No wonder you are scared to go. Do you have any evidence on you that you can take, to prove you don’t have it, but that you have Addison’s?”
“I had doctor who knew my issues who wrote a letter I keep in the file !…He stated not only do I not have Munchausen’s, I have all the positive test results proving my diagnoses! I cannot tell you how many times I’ve had to deal with poorly trained er drs and nurses who simply thought the was in my head, or that I was anxious!” Sally was remembering the letter she had got written 3 months before. Would it help?
“Please take that, get a cab, or call an ambulance, and get to hospital. You are going into crisis.”
Dave came back to bed, He had just had a second trip to the toilet, this time he had gone at both ends at once. It was 6am and he felt very dizzy, new he would continue to throw up.
“Can you take me to hospital. I need fluids, and to find out why I am so sick.”
Jane was already dressed. “Where’s your bag, I need to inject you before we go”.
She got out the solu cortef and began drawing up the meds. “Don’t worry about getting dressed, just put a dressing gown on.”
“Sit here while I get everything ready. Do you think you will be ok with the injection? “
“Yes, just get me to hospital.”
With that Dave lay down and closed his eyes. Jane took the injection and jabbed his leg, slowly injecting the steroids, praying it would keep him ok till he got to hospital.
Sally picked up the phone to call a cab but realised she just didn’t have the energy. She needed to go to the bathroom again.
It seemed to be a long way this time. The apartment was small, but she could hardly move. Leaning against the wall she slowly made her way.
All of a sudden the walls began spinning, the floor started moving out from under her feet and she couldn’t stand.
It all seemed to be happening to someone else. The pain was intense, it was like a vice grip was around her chest. She started having trouble breathing.
“Dear God, please let Judith stop in on her way to work, and find me.” All Sally could think was that Judith, her sister, was due to call in in an hour, to drop off some paperwork.
Sally lay there, wishing she had had the courage to go to ER, but knowing that there would have been no point, as they never believed her anyway. She slowly felt herself going to sleep on the cold bathroom floor.
Sally’s life slowly slipped from her body. It would later be found that she had had a heart attack due to extremely high levels of potassium, and dangerously low sodium. Unfortunately, this was a very text book adrenal crisis, however, the Dr’s would fail Sally again, as the wrote the cause of death on her death certificate as “Myocardial Infarction”. There would be no mention of the cause being an Adrenal Crisis.
Dave and Jane arrived at the emergency room. Jane went to check Dave in and struck a nurse who clearly had no idea what an Adrenal Crisis was. She knew what was coming. She knew that this nurse thought she was being over dramatic.
“Please calm down ma’am, he’s not dying” was the stock standard response the Triage nurse gave her when she tried explaining the crisis.
This didn’t surprise Jane as she had heard it all before, the last one was “modern medicine is just failing you. I’m sorry but go home and both of you get some rest “.
She knew what she had to do, and did it. Right in the middle of ER she threw a fit. She demanded a Dr look at him immediately, or the nurse had to sign the letter she was holding, stating she was refusing to treat her husbands adrenal crisis as a medical emergency.
She had used this letter once before, and just like that time, it had the desired effect.
Dave was taken to a treatment area, given IV fluids, and asked if he needed more steroids.
“He will need at least two bags of fluids, and another 100mg solu cortef in about 4 hours.” Great, I will chart it came the response from the Dr.
He had never seen an adrenal crisis, but he had been told by the nurse that this woman was serious, was very knowledgeable about her husbands condition, and was not going to take no for an answer.
He had met people like this before. People with a life threatening chronic illness. They knew more than the Dr’s about their conditions, and they knew what treatment they needed. He loved patients like this because he didn’t have to guess, and get it wrong.
Jane was happy. “Finally, a Dr that listens to his patients, and gets chronic illness.” She said this to Dave after the Dr left the room.
Dave left the hospital 8 hours later, having had anti nausea meds, 300mg Solu Cortef, and 2 bags of fluids. He also had a script for antibiotics for the infection that was brewing (according to his blood tests). They didn’t know where the infection was, but the Dr didn’t want to take chances.
The Dr had seen someone die once during his training because his supervisor hadn’t listened to the chronically ill patient, had disbelieved what was required, and provided a course of treatment that was wrong. That was never going to happen again on his watch.
Both times he was in crisis and I pretty much had to throw a fit to get him treated.
The people in this short story are not real. But the stories of their treatment are. Also the fact you can have a heart attack or stroke because of an adrenal crisis are is real.
There are also stories of people being refused steroids because they are drug seeking, but offered barbiturate pain killers, so they will hurry up and leave the ED. They are then told they are depressed, anxious, or just nuts, if they refuse the pain medication and ask for life saving steroids instead.
For many, telling a Dr you need steroids makes you a drug seeker. It is all to common.
Many people, mostly women, before diagnosis, are told they are neurotic, psychotic, depressed, suffering anxiety and in one case I have heard of, been sectioned.
Adrenal Insufficiency can alter the thoughts, and mental capacity of the sufferer. They don’t always make sense, they don’t always understand what is being said. Dr’s in ED’s don’t have time to think, they only have time to act on what they see. And they see a drug seeking nut job, not someone who is critically ill.
Once these labels are on your medical file, it is extremely hard to take it off. If you live in a small town and you get the same ambulance officers each time, you will find their treatment the same. And if you have family that also believe this, it makes it harder to get the right treatment.
There are many people who will not go to hospital when in adrenal crisis because they are so tired of being labled, and left.
I don’t have an answer for anyone. It is a change that needs to come from the Medical side, not the patients side.
Bruno Allolio, is Professor of Medicine at the University of Würzburg comments:
“As most physicians very rarely encounter an adrenal crisis, they frequently fail to act adequately. There are numerous reports from our patients and others that physicians ignored emergency cards or failed to give parenteral hydrocortisone despite the patient presenting the emergency kit. Thus, I occasionally have given my patients a written text to be signed by any such future emergency physician. It states that the patient has communicated the presence of impending crisis, has shown the emergency card, and the emergency kit. By signature, the physician would thus attest that this evidence was presented, thereby documenting malpractice, if refusing to administer glucocorticoids. I reasoned that asking for the signature would greatly facilitate hydrocortisone administration.
As a consequence of these frequently encountered problems, the essential principle of crisis prevention can be stated as follows:
The well-informed patient (or his/her relative) guides the poorly informed health-care professional!“
If you are a Dr and reading my blog, think about how many patients have you had where you have decided the symptom they have must be anxiety or depression, because they are not presenting in the normal way.
If you have a patient present with a “pseudo seizure” how often do you decide that it means a seizure caused by a mental problem, rather than “caused by something other than an electrical misfiring of the brain, but NOT a mental issue?”
Pseudo seizures have been suffered by a number of AI patients who, because of them, are treated as if they are faking their symptoms. They are not, there simply isn’t any medical research into why these seizures happen.
Chronically Ill patients should never be afraid to go to hospital (where they should feel safe) because of seriously poor treatment by the medical profession.
According to www.ncbi.nlm.nih.gov
Which drugs do people seek?
Benzodiazepines and opioids are the two most common classes associated with drug-seeking behaviour. Opioids commonly misused in Australia include oxycodone, fentanyl, codeine and morphine.
Psychotropic drugs producing stimulant effects, euphoria, sedation or hallucinatory effects are sometimes sought. These include the newer antipsychotics quetiapine and olanzapine, and stimulants such as dexamphetamine and methylphenidate.2 Anabolic steroids are also increasingly misused.
Anabolic steroids are NOT the steroids needed in adrenal crisis, however, as soon as you say steroids, it is assumed this is what you are asking for, and therefore, you must be drug seeking.