And Just Like That, It's Cocktail Time

I woke up yesterday, after writhing with nausea until 2am, and was fine.

No need for albuterol or nebulizer.

So farking weird. I want to accuse myself of making it all up, but I was there! You would never know I had intractable asthma the entire day before--nothing I did worked. And to go from the narrow edge of an adrenal crisis to not,in what seemed like the blink of an eye, was just...bizarre. Did my body run a Hail Mary pass at the last minute or what?

Fatigue was okay, with some adrenal burning in my back. If I hadn't needed to drive, I would not have taken any steroids yesterday. Since I had places to go, I did 5mg to play it safe.

Got my vitamin IV and boy, did it stir the pot.

This was my first official Meyer's Cocktail. I don't know what the others are called. Anti-oxidant infusions? But they weren't Meyers from what I know.

Here's the list of what was in my Meyer's Cocktail:

-Vitamin C
-Magnesium Sulfate (with more added later.)
-Calcium Chloride
-Pyridoxine
-Dexpanthenol
-Vitamin B-12 (ah, no wonder I feel so frisky despite being tired from lack of sleep!)
-Vitamin B complex
-L-glutathione
-Glycchrric Acid (that looks misspelled to me, but it's what they wrote down.)

For a second time in three weeks (OMG I've been sick forever), the IV infusion went in and 'broke' the congestion in my lungs loose. I became acute very rapidly and my BP plunged. Hence the additional magnesium, which helped quite a bit.

At the start, the IV hit me like a Mack Truck and took me down. By the end, I was better. Again, better than the ER. Better than the nebulizer. Even if it was the initial trigger, although all that gunk would've caused problems sooner or later anyways.

So I'm tired and wiped and just blah.

Going backwards a bit...the ER visit last week. I filled out the survey for the ER. Not sure if I'll mail it in though. My only criticism is they really didn't pay close attention to my O2 levels and I really needed the doctor to ask me how I felt since it would've triggered me to say 'not better.' (I was too out of it to communicate well, something else that was missed. I think I was just perceived as quiet and no trouble vs. sick.)

In the end, it all worked out, I guess. They were so slammed and I looked better than I was, so I know it wasn't intentional. On the other hand, I feel like maybe it would help to say 'Hey, you discharged a patient whose O2 dropped to 90 after rolling over and sitting up. She left just as bad as when she came in.'

I don't know. I'm conflicted about it. It's also amazing how uneven ER response is to asthma.

Status Check

Steroid withdrawal has diminished a bit. I could sleep last night and didn't have to fight spasms in my diaphragm to breathe.

The asthma is still pretty active. I still need the rescue inhaler at night and have been taking Pulmicort twice a day to try to beat it back into submission. Crossing fingers...I think I'm winning. (Update: Last night...first night without needing albuterol. Yes!)

I am eating! And yes! I'm excited about it! Not a lot, but at regular intervals. I have lost weight though and hit a number on the scale I haven't seen in a year (finally, a diet that works!).

My adrenal glands aren't burning anymore. So they've either given up and died or are feeling better.

Still weak. Weaker and fuzzier than I should be. I am trying to get by on the smallest possible dose, so perhaps am not taking enough.

Dosing is tough.

Endo told me to do 40mg and reduce by 5 every 2-3 days. They also told me I didn't need steroids and that this would not suppress the HPA axis (I am doubtful since my HPA axis is the gold medalist valedictorian champion etc... of suppression).

So the mixed messages from the endo and my fear of suppression mean I've been doing strange things with the dose. I feel guilty for taking them since I supposedly don't need them, so I try to minimize the dose.

Actually, I've been so loopy, I couldn't tell you how much I've taken at any one time other than to say, it was never 40mg and I only split dose a few times. Because splitting makes suppression easier.

Over the weekend I took 15mg of hydrocortisone, but I don't know where I came from. Maybe down from 30mg? Obviously, if I can't even keep track of my dose, I must be doing it wrong.

Today I will boost the dose back up to 30 and see what happens. If it helps, I am thinking of doing an alternate day high-low dose. Because I don't want to suppress.

Hedging my adrenal bets.

Comedic Relief

1. The toddler snuck the scrub pants I wore home from the endoscopy into her bed. Ewwww! They are now in the garbage.

2. She appropriated the (unused) barf bag from the ER, filled it with water and ran around the house muttering about how it was perfect for her 'museum collection'.

3.We all wanted to go to bed, but couldn't because the toddler was still up. Instead of staying in bed, she sat in a laundry basket giggling maniacally. She's been sick too and needed the albuterol which always winds her up.

4.I am pretty sure, with all the broken capillaries and bruising, that I am the poster girl for what zombies consider ugly. Just in time for our 16th wedding anniversary.

I took more steroids and feel much better. Well enough to eat. You would think 125 mg of solumedrol would last longer, but no, not so much. I thought I would be peppier than this, instead I drifted through life like Lurch until I got a clue and took some 'roids. Up until that point? I wasn't sure I would make it.

Also? The asthma laughs and spits in the face of solumedrol. It's getting lost in the adrenal drama, but the asthma is mad as hell. This seems to be a reaction to anesthesia. I wheezed enough to get a chest x-ray at the ER, but no neb treatments. I almost asked, but figured I was breathing pretty well and pulse ox was good, even if the lungs sounded like fizzy pop. Besides, I have a neb at home. No need to pay a grand for what I can do for myself.

The endo thinks I'm nuts, but also atypical yet denies everything while also giving me steroids. (I think the technical term for that is mind f*ck.) I think I'm pretty typical especially when I talk to other patients. Know what is really typical? The gap between endos' care and their patient's experiences.

The high bp continues to be a confounding factor. My perception, as the hostage of this body, is the bp spikes trying to cope with the stress. My body is fighting. If it hadn't fought that night or had lost, I would've passed out. Alone.

Next time I'll bring the bp unit so they can see the lows. I've decided this adrenal shiznit is much more nuanced than anyone realizes.

Maybe an Adrenal Crisis

I'm tired and I have a headache with the shakes so this may not be the most coherent post ever written.

I went to the ER. Primarily because the vomiting precluded oral steroids and I needed help working around that. And there was the possibility of an endoscopy complication. Also, I was shaking until my teeth chattered, short of breath and my stomach was burning hot.

The doctor was great, really great. I would have liked to have had the IV steroids a little faster as studies show delaying the dose is what leads to death in an acute adrenal crisis. But the ER was, overall, great.

It helped that I looked like sh*t. The endoscopy anesthesia had beaten me up pretty good to begin with so I had the fat lip and some broken capillaries already. The vomiting then made my face bleed under the skin on a large scale. Natural zombie make-up. Today I have black eyes.

I went from Triage, barely able to keep my eyes open to winking at the triage nurse on my way out saying "Steroids" in response to her "You look so much better."

It's hard to say what happened. The thinking is it was an adrenal crisis or an almost crisis, but I was not text book. For one, my bp shot up way high. It had been too low all day and I drank pickle juice as I wasn't feeling great (but not so bad I thought I would end up in the ER! In fact, I felt optimistic about the next day being even better.).

I had no idea I was going to throw up. Did not feel sick at all. There was no warning. I went from 'tomorrow is going to be great, I'm on the road to recovery' to puking in the tub from my position on the toilet. It was very fast. Very sudden.

I was terrified I would pass out and was desperate to reach the hubby. He didn't check his phone, the stinker. Neither did his friends or the skating rink he was at. My neighbors were all asleep already. So I packed a bag and tried to wait for the hubby figuring 911 was always an option.

They started me with fluids, which helped give me control over whether my eyes stayed open or not, but didn't touch the abdominal pain and then I started wilting again. The steroids are what finally eliminated the pain and 'woke' me up--that is, I think, probably the most credible evidence that it was adrenal.

My lab work was also normal, but I gather this is not unheard of from other adrenal patients.

And that's it. I'm going back to bed. I probably forgot to include something important.

Sifting Through My Medical Records:AM Cortisol of 6.1

First a note on Roger Ebert & the Newlyweds:

If you recall the post I did on the young couple in Arizona struggling to feed and house themselves while fighting terminal brain cancer, Roger Ebert has picked up the cause.

Read about it on Head Nurse's blog.

The couple's blog is here and this is where you can make donations.

And then say a prayer for the hundreds if not thousands or hundreds of thousands of people who don't have the insurance of a cause celebre.

***

I finally got my medical records from the last several tests I've had. Which is good considering the pulmnologist did not return my calls when I inquired as to the results of the CT scan.

Call me crazy, but I think that loving feeling is gone. On both sides.

The right lung nodule has not grown (yay!) nor is it gone (boo!), BUT it seems I have twins as there is now one on the left side that was never mentioned before (to my knowledge). Final 'impression': Stable punctate pulmonary nodules.

I don't understand all the terminology and I'm confused as to whether or not I have a new nodule. Was it there before or not? The radiologist's report will go out to relatives at the major University hospital for interpretation.

My am cortisol on the day I saw the current endo AFTER taking 10mg of prednisone?

6.1.

That is LOW people.

Keep in mind, this was not long after the most serious, scary crash I had where recovery was very very slow. I guess my gut instinct that I hadn't taken enough steroids to address the problem could have been right.

ACTH was less than 5, which is also low, but I suspect not unheard of if your HPA axis is suppressed.

So I guess the ACTH challenge shows some recovery????? The baseline was 13 which is more than double from where I was with the first am cortisol of 6. However, 13 is the cut off for additional testing of the adrenals so it's not exactly a promise that I'm out of the woods, although I am hopeful.

Ironically, the lab flagged my final ACTH challenge reading as high at 20.6. How funny! Especially considering that medical school texts advise that anything less than a 22 should be further investigated with an Insulin Tolerance Test.

The thing that aggravates me is I feel like the endo should have disclosed the initial low cortisol to me since that was the whole point of seeing them. I also would have been much more confident in their interpretation of the ACTH challenge if it had been framed in the context of ' you were at 6 when I first saw you, now you're at 13, this is progress.'

Don't get me wrong, I'm still going to push for another challenge if I struggle at sub-physiologic doses, but better communication would have been appreciated as well as been helpful.

Again, this is a hard, painful slog. I need to know I'm suffering for a good reason. Also, improving the context makes me less of a pain in the a$$ as a patient so it's really a win-win for everyone.

Is it really so hard? Did the endo even look back to see the initial results when discussing the ACTH challenge with me?

Aside from all the adrenal stuff, the Erythrocyte Sedimentation Rate was high. From my scant reading, I gather this is a non specific marker for inflammation that can be useful in determining a diagnostic direction. I don't really have any feelings about this one way or the other, although perhaps I really should see a rheumy.

Lastly, all the anemia related blood values are looking better. A lot of them are normal now and the few that are lagging behind are just shy of normal. This is a happy improvement.

Now What?

Normally when I take 20mg and I'm not, like, sick with some kind of bug, I feel 'high' pretty quickly. Next thing you know, I'm writing 3,000 word blog posts. Four times a day. That is how lots of steroids hits me. Everyone can tell I'm getting more cortisol than I need.

At 20mg yesterday, I just wanted to go to bed. I still am not sure if I took enough but was/am afraid to take more.

I don't know what I'm doing.

I began to question when is this an emergency? When I have to take 40 50 mg? How much steroid do I take by myself?

Please don't let me end up in the ER. Please not that.

This was bad. I am still not sure if I've completely turned around. Still not sure I should've stopped at 20mg.

But so far, just sitting on my ass after about 8 hours of sleep, the adrenal pain is about 95% gone instead of just 60% yesterday. I don't feel so dog tired, but we'll see what happens this afternoon.

We missed the dinner dance. Went to a movie instead. I spent most of the movie wondering is this a good thing or a bad thing for the adrenals? Am I making it worse?

I didn't feel up to a movie but it was Date Night. Come hell or high water.

The toddler was at the grandparents for the night. That's not gonna happen again any time soon. You know how it is, wasting a babysitter is a sin when you are a parent. Even if you do feel like death warmed over. Under parenting laws, you actually have to die to get out of Date Night.

I am glad I went. The movie was good. It made the hubby happy and he lets me snuggle and sleep on his shoulder during movies. Something I realized I do anytime my adrenals are for sh*t. Deja vu of the last time I had Secondary Adrenal Insufficiency.

So the next big question is when do I wean down from 20mg? Tomorrow is a stressful doc appt that, if I'd been smart, I would've canceled and rescheduled when I had the chance.

The last thing I need is more stress and I don't know what is more stressful than sitting across from the doctor who hurt you when you needed help the most.

So I'm thinking at staying at 20mg through maybe Tues. Weaning down to 15mg on Wed, Thurs. Down to 10mg on Friday and down to 7mg next Sunday and 5 on Monday.

From there I am no longer trying to get off steroids. I tried, it's dangerous either because I'm not tapering correctly (because no doctor will tell me how to do it) or because my adrenal glands are not ever going to recover. But since 5mg can be a little too much for me and 4mg was the best dose (not too much, not too little) this last taper cycle I will try to get back there and camp until I find an endo who wants to do something about what's happening over here.

Crash Course

5mg was not enough. Not even close.

This was the first time none of my 'tricks' worked. Salt couldn't keep my blood pressure up. Sugar didn't help. More sleep or more steroids didn't help. The adrenal pain did not abate.

I tried to ignore it but last night it was painfully clear that I needed more steroids.

I took 2mg to start.

Nothing.

Then another 5mg for a total of 12mg that day.

The adrenal pain improved by about 60% with that. Which was a nice break. Finally some relief.

Although I was up in the middle of the night hunting down potassium for muscle cramps and thinking, 'Hmmm I wonder if this means my potassium levels are off.'

The fatigue seems to be better this morning but all I've done is get up and sit. The dinner dance is tonight, I doubt we will make it. Poor hubby will be doing the biweekly grocery store run too unless I dramatically improve soon.

The adrenals are a dull ache and it worries me that I can't banish it. How much prednisone do I need?

To recap...

Crappy taper for asthma in March.

Suppressed my Hypothalamas-Pituitary-Adrenal-Axis.

Took me about 2 months to wean off steroids. From March through early June

But I did wean and I was off steroids.

Was fine for June and July, some 5 day burst dosing each month for asthma and adrenal symptoms with illness.

I was fine. Doing great. Working out hard. Losing weight.

August marked a long slow slide to hell. Had to stop working out, no energy and from here exercixe eventually became a problem in that it was suddenly too 'stressful' for my 'princess and the pea' body.

Saw endo. Got super stressed about it and had a mini crash after the appt. Did a 5 day burst as a result in early September.

Seemed to be fine until....

I 'crashed' about 5 days after that due to a 30 min elliptical work out and 2 hours of raspberry picking. BP 90/60.

Been on steroids ever since, mostly 5mg or lower. One brief uptick in dose for asthma flare, but right back down to 5mg.

Weaned down to 2mg.

That didn't go well.

Bumped up to 3mg.

That wasn't going great but I was trying to power through.

Encountered some strenuous emotional stress.

And tanked.

Steroid Withdrawal Vs. Adrenal Crisis: How to Tell the Difference

First, I am not an expert. This post is going to be based on my personal experience and the reading I've done. There are gray areas. It's not black and white, so you need to be really careful about taking advice from the internet. The problem is, finding a doctor who knows more than the internet on this stuff is hard. Hopefully you can find someone instead of relying on Dr. Google.

Steroid Withdrawal is what happens when you stop taking steroids. It's a pretty immediate cause and effect. Stop steroids and, very shortly, you feel like crap. The hallmark symptom, in my experience, is muscle pain, essentially all over your body. If you happen to work out when it hits, you will find yourself inordinately sore to the point where you won't be exercising again any time soon. That is steroid withdrawal.

It is not dangerous per se, just really unpleasant.

Steroid Withdrawal can also cause low blood sugar and low blood pressure similar to an adrenal crisis, but unlike an adrenal crisis, it's not an emergency. You can treat the problem yourself by increasing salt consumption and eating a few more simple carbs every day.

You should notice an almost immediate improvement with salt and sugar.

Steroid Withdrawal will resolve in a week or two--longer in some cases. The trick is to manage the pain with Tylenol/Advil, eat salt, eat sugar and rest until the worst passes. You should notice a slow, gradual progression of improvement which is a good sign that it's steroid withdrawal.

With regards to the pain of steroid withdrawal: For Cushings patients, who actually have brain tumors that cause steroid-like problems, they often get prescription narcotics for the muscle pain of steroid withdrawal (which is really cortisol withdrawal for them because in Cushings your body makes way too much 'steroid' all by itself, but the symptoms are identical to steroid withdrawal). So the pain is significant. No doctor is going to give you narcotics for this because they rarely have much experience with it, so don't expect that, but realize the muscle pain can be severe and you will still be okay.

The treatment for steroid withdrawal is either time and sucking it up or some doctors will compassionately prescribe more steroids and do a slower taper to give your body time to adjust. In my reading, the doctors most likely to prescribe steroids for withdrawal are Rheumatologists or GI docs. Any other specialty and you are most likely out of luck.

An adrenal crisis is what potentially happens when your adrenal gland function has been suppressed by the use of steroids. Typically, steroid use longer than 5-14 days at doses higher than 5mg of prednisone can result in adrenal suppression.

Suppression means your body is literally not making the steroids you need to function. It forgot to 'wake up' after the prescription steroids stopped.

Which can lead to an adrenal crisis, but just because it can doesn't mean it will. Most people are fine. The vast majority of people are luckier than me in this regard.

For me, the hallmark adrenal crisis type symptoms I have are the stomach/back/flank pain along with nausea, diarrhea, profound lethargy, feeling like I'm going to pass out, shortness of breath, loss of appetite, low blood pressure sometimes with accelerated heart rate and complete inability to function in my daily life.

The dishes don't get done, I can't work, I can't exercise. My life screeches to a halt.

Sometimes people who ask me if their adrenals might be a problem are also working full time, working out every day and regularly cleaning their house. That level of function is NOT possible with acute adrenal insufficiency. There is no living, there is just inertia that sucks the soul out of your life.

While joint pain is listed as a potential symptom of adrenal crisis, I have only ever had serious pain with steroid withdrawal.

As long as I don't have the stomach/back/flank pain AND low blood pressure, I figure I'm okay. When those two pop up together, I get worried.

So that is the difference between steroid withdrawal and an adrenal crisis.

Any questions?

In March after being in the hospital for asthma, I immediately had steroid withdrawal symptoms once I started an alternate day taper. I actually ended up in the ER because, while I knew all about suppression, I was not yet familiar with steroid withdrawal. I thought I was suppressed (which I was but it wasn't possible to know that yet unless someone ran the right tests, which no one did) when actually I had withdrawal symptoms.

Things later crossed the line into potential adrenal crisis when the back pain started. It felt like someone was holding a blowtorch to my kidneys. The heat in my body was intense, unlike anything I have ever experienced.

If I had not found a half way intelligent endocrinologist, there is no doubt in my mind that I would've had a true, life threatening adrenal crisis.

The really confusing thing about adrenal suppression (a.k.a. Secondary Adrenal Insufficiency) is that you get to experience steroid withdrawal mixed with the potential of an adrenal crisis. As you stress dose and then taper, you're (potentially) going to go through withdrawal again and again. Which is stressful, which can tax your adrenals triggering crisis like symptoms. It is a vicious and unpleasant cycle.

Most people are, allegedly, not suppressed that long. The medical literature believes that Secondary Adrenal Insufficiency caused by steroids only lasts a month or so. This is utter bullsh*t in my experience. I have had this three times and each time it has been a journey of about a year to get full adrenal function back and then 1 to 2 years after that to fully recover.

It has never been as easy as the medical textbooks make it out to be.

Related Posts:

Can Corticosteroids Cause Your Adrenals to Crash or an Acute Adrenal Crisis?

Under Pressure

Self Care for Steroid Withdrawal and Adrenal Suppression

Can Corticosteroids Cause Your Adrenal to Crash or an Acute Adrenal Crisis?

Someone found this blog searching for information on this and I want to slap something up for anyone else who lands here with the same question. Because the expert info on the internet is kind of vague, particularly if you are trying to decide to go to the ER or not.

Can corticosteroids cause an adrenal crisis or adrenal crash?

Short answer: Maybe.

Long answer: Most of the medical literature says it would be rare for an adrenal crisis to occur because the part of the adrenal gland that controls blood pressure is, allegedly, not suppressed by corticosteroids.

If your blood pressure stays normal, you (probably) won't have an adrenal crisis. It's when the blood pressure tanks that you know things are getting serious. My understanding is this is why they believe an adrenal crisis is rare, because your blood pressure should not be affected.

Note that rare is not the same as never.

In addition, there are a few (i.e. minority opinion) references in medical literature saying going off corticosteroids can cause an adrenal crisis. If your last dose of prednisone* was higher than 5mg, you may have a problem.

(*Unfortunately, I am not familiar with other steroid medications, but if you call your pharmacist they can work out what the prednisone equivalent is for your steroid.)

I have also experienced severe blood pressure drops and acute adrenal crisis type symptoms myself even though that's not supposed to happen on paper. So it probably varies from person to person.

The other thing to consider is Steroid Withdrawal which, while unpleasant, is temporary and generally not dangerous. If you have just stopped steroids and have any muscle pain, it may not be an adrenal crisis. It could be withdrawal. I will write a post addressing the difference and post it separately so we don't get too bogged down here.

If you are having issues, feeling like you're going to pass out, feeling weak with all the other symptoms of an adrenal crisis (which I am sure you have googled, otherwise you wouldn't be here) here's what you can do to help yourself.

1. Eat salt. Lots of salt. In fact, if you are feeling bad enough to google 'adrenal' crash' I want you to get up right now, go to your fridge and drink either pickle or olive brine--this is the fastest method of delivery in my experience. Chug it and then eat some pickles and olives just to be safe. If you have hot dogs, eat a few of those, they are very high in sodium. Once you have done that, come back and finish reading for the next steps.

Also, from this point forward, heavily salt your food at regular intervals during the day until you know your adrenal glands are 100%.

2. Eat some sugar. Drink a glass of juice, eat some chocolate, have some cake. Whatever you got. But not too much or you'll get a sugar high. It doesn't take a lot of sugar to raise your blood sugar.

3. Drink some water to keep fluid levels up in your body. Give all that salt you're eating something to retain to keep your blood pressure up.

4. Wait 15-20 minutes and see how you feel. If you don't feel better then either something else is going on or your adrenals are just not able to rally. Try repeating steps 1 through 3 again before moving on to #5.

5.Take some more corticosteroids, if you have any. This should rectify things in a hour or two. If it doesn't, either you need a higher steroid dose OR are too far gone to help yourself and need emergency care OR it's not your adrenals.

Tip: Ask your pharmacist what the "physiologic replacement dose" is for your particular steroid. Knowing this can be helpful in deciding what dose you need when the adrenals start to crash. For prednisone, I have read that the physiologic replacement dose is 5 to 7.5 mg. I try not to take more than that unless I'm having really serious problems.

When you take more than the physiologic replacement dose, you get more side effects from the steroids. Also, more is not always better because it just enables the continued suppression of the hypothalamus-pituitary-adrenal axis which is not the goal.

Note: In a serious adrenal crisis, the more steroids the better, but, for me, if I act fast, the second symptoms start, I have found I can do a lot with just a little steroid. This is a fine line to walk. If you are really concerned or not too experienced yet in how your body is handling things, go for the high dose, but know you'll have to taper longer, go through more steroid withdrawal and it will take even longer for the adrenals to come back.

You will know if the dose you took is helping or not within in a hour or so, you can always take more steroids if you need them. But again, if you are really really sick, it might be better to take a higher dose. It's really your call.

I have been fine doing what I've outlined here, it may not work as well in your body, you know? Be careful.

6.Make an appointment with an endocrinologist or your regular physician to talk about Secondary Adrenal Insufficiency. You need a prescription for steroids and a plan to keep you upright until your body recovers.

You may have to push assertively on this. There are supposedly upwards of 6 million people in the US with Secondary Adrenal Insufficiency due to steroids, but, in my experience, doctors have never met them.

7.Buy a blood pressure monitor so you can track the drops at home. This also gives you more data points to feed your doctor. I also find it helpful to know what my BP is doing, usually once it drops to 100/70 I know I'm starting to have problems and can intervene before it gets bad.

These are the steps that have keep me out of the ER and mostly functioning normally. It is not easy, but it is better than going to the ER.

Now, if you are at the point of vomiting, then you probably aren't on the internet, but if you do end up vomiting after reading this along with all the other adrenal crisis symptoms, you should go to an ER.

Which probably won't know what to do with you, so bring someone who can say the words 'adrenal crisis' on your behalf. If you are alone, write it on your wrist in pen or Sharpie marker in case you pass out. (By the way, you really should have a medical ID bracelet.)

An acute adrenal crisis hits fast and it hits hard. From all the patient accounts I have read, there's not much warning and the window of time to help yourself is pretty narrow. For me, it has been very much a lightning bolt out of the blue. One second fine, the next BAM fighting to stay conscious. You must act very quickly to prevent a complete crash.

People who end up vomiting during an adrenal crisis, often seem to end up unconscious within seconds. So take any vomiting in conjunction with other adrenal crisis symptoms very seriously. Vomiting also makes self care difficult, if not impossible, which means it's automatically ER time; they can administer sodium, sugar and steroids that will improve things via IV.

The main goal is to take care of the problem before you ever get to the vomiting part. Adrenal stuff is pretty unusual and your ER may have never seen an adrenal crisis before. It's much better to deal with it early so you can stay home and out of the ER.

However, obviously, you should use your own judgment about when to go the ER. This is just a blog post, it has no idea how you feel, so don't take this as anything more than a guideline.

Good luck. I hope this post helped.

Related Posts

Steroid Withdrawal vs. Adrenal Suppression: How to Tell the Difference

Medical Alert ID

I ordered a medical alert necklace and hated it. I would really rather not wear any medic alert jewelry although I understand that people are going to look first for an id on my body. In the past (over a decade ago!) when I had adrenal insufficiency, I clipped a medical bracelet to my purse strap.

Partly because the inquiries as to what I was wearing it for were incessant--people are so nosy!--and partly because I didn't like the bracelet. Even on my purse the attention seemed constant.

And it's not like explaining an allergy. Say the word allergy and there's instant understanding. Same for diabetes or even a heart condition.

But try explaining the mess that is my adrenal system and you rapidly learn people have no clue what the hell the adrenals do or don't do. It just leads to question after question until I feel like I should prepare a handout or something.

I don't really want to lie to people either, imagine if something were to happen? But then I am not really interested in being 'out' anyway so maybe I should tell everyone I have a peanut allergy.

And watch them freak out when I forget the lie and eat peanut butter in front of them.

Sometimes you can't win for losing. Reminds me of when I was pregnant and my boss lied to everyone saying I couldn't travel overseas due to knee surgery (he was trying to be nice since it was early in my pregnancy). Only he didn't tell me about the lie and I blew his cover when people started asking me about the surgery.

Anyway, I took some pliers and cut the chain to the necklace so I could put the tag on my key chain/wallet. Then I ordered a bracelet, that I still won't be happy with, but it's better than the necklace.

Here's what the wallet looks like. The back clarifies it's secondary adrenal insufficiency and gives my more serious medicine allergies, says I have asthma, and provides the hubby's phone number.


I don't expect these ids to see any use. As I've mentioned before, theoretically I should be at super low risk of a true adrenal crisis. However, even if I don't have a real crisis, my blood pressure is dropping steeply enough to be a big problem, especially if I'm out and about. The last time it happened was truly frightening and would've been an ER visit if I hadn't known what to do.

I feel better just knowing if the worst were to happen, the medical ids would be there.

Crash

So after I wrote this post, I took a shower and went raspberry picking.

And promptly got sick. Adrenal sick.

Apparently, 30 minutes on the elliptical, a couple squats, a shower, raspberries and a quick retail stop are too much for me.

I was trying to buy birthday invitations for the toddler's party when it hit me; extreme fatigue, dizziness, stomach pain, nausea. I stopped shopping and started looking for a place to sit before I passed out.

Made it out of the store okay and into the car.

Grilled hubby on what to do and say if I collapsed--thank goodness he was with me. Made sure he knew I would need a lot of steroids and asked him to check the dose they gave me. Adrenal crisis should be rare in my situation, but I was scared. Scared in a way I haven't been since my adrenals sent me to the ER in March.

Got home. Started eating salt and sugar. Took my blood pressure, 90/60--not good--and went to bed where I crashed into unconsciousness for a couple hours.

Now I'm up. Tired and not sure how sick I still am, not planning to do anything other than sit on my ass the rest of the day either. Take out for dinner.

The question is, do I need prednisone? Or is this some kind of withdrawal? Although withdrawal from 5mg for just 5 days would be highly weird indeed.

A couple things do need to change though

1. I need a medic id bracelet. If I had been alone...

2. I need to have some prednisone with me in my purse.

3.And some kind of sugary salty snack.

Member of the 1% Club Several Times Over --Where's My Prize?

Saw the primary doc. They are listening. I can see the wheels turning and I think I'm being taken seriously.

They asked if I'm exercising. Everyone asks this. Somehow my description of the fatigue tends not to compute the first time around.

I snorted at the question. "This is it. This appointment is ALL I will do today. From here it's all nap and resting. I haven't exercised in 2+ weeks."

Although I did end up taking the toddler out for a burger and to the playground. It about killed me, but I am committed to not sucking the life out of my daughter's childhood. Then I came home and threw out more food I am too tired to cook and the hubby brought home take out. Again. After which, I took a loooooong nap.

The other exchange, has me kind of kicking myself. Look, I have read and read and read EVERYTHING I can find on adrenal crap. Studies.Textbooks. Patient experiences.

EVERYTHING. I am the Queen of Adrenal Factoids at this point. Where do I audition for Jeopardy: The Patient Edition?

When the primary doc was confuzzled on why I would be prescribed prednisone as it doesn't contain the mineralocorticoids (hope I spelled that right), without thinking, I blurted out 'This is probably secondary adrenal insufficiency.' *face palm*

See, you don't need the mineralocorticoids if it's secondary adrenal insufficiency because, supposedly that capability is still intact in the adrenal glands. (On a side note, I also read that because of this it would be very very rare to have an acute adrenal crisis, but I would like to see more than one source on that before I take it as gospel.)

(And of course being a lowly stoopid patient, I could have all this wrong.)

I liked that they questioned it. That they were thinking primary adrenal insufficiency, because I do think I need some testing--whether it's damage from sustained prednisone use from the ages of 15 through 30, or the fact that the first time my adernals tanked it went undiagnosed or other high medical weirdness, something certainly seems off. The endo is planning to do that testing as far as I understand.

Anyway, I wanted to kick myself for saying anything at all. Fortunately, I don't think they took it the wrong way. They actually apologized for me having to go through all of this, which was a real kindness, I thought. I really appreciated it because my life has SUCKED lately--the bright spots have been hard to find. They also said I am that 1% who has issues with suppression.

As if I've never been an outlier before. Puhleeze. As far as outliers go, my health is a total 'slore'* I should get 1% tattooed somewhere. Maybe even trademark it as my brand. It seems to be my personal percentage.

The goal at this point is to get the primary doc all copies of all paperwork--past, present, future--related to the adrenal stuff. I am all for that. The more doctors who know this about me, the better. I am learning the painful lesson of having just ONE doctor know serious medical stuff about me. When they left town, I was left high and dry.

I won't make that mistake again.

*Slore = slut + whore. Courtesy of Olympic skater Johnny whatshisname who recently described Olympic gold medalist Evan whatshisname thusly. The word has since stuck in my brain.