Of Battles and Wars

I think one of the worst ways for the stomach flu to arrive must be in the midst of cooking a huge batch of chili for the church chili competition.

Especially if you went to bed, all drowsy and ready for the Land of Nod, only to jerk upright with "I forgot to make the chili." Commence the midnight cooking session, pepper it with yawns of resentment.

I felt fine. It really hit me out of the blue. The only possible hint that I was sick was wicked heartburn that was resistant to medication the last two days.

So there I was dumping everything in the crock pot and the food didn't smell so good and then...well you can imagine, right?

Once again, I'm the only one sick, but I do think this one is an actual bug and might spread. We'll see.

It played very adrenal. Lots of adrenal pain, huge wave of weakness, breathlessness, shaking and that horrid stomach pain along with that even worse feeling that something was really wrong. I fought and fought and fought not to throw up because that probably would have pushed my system over the edge.

I prevailed in controlling my stomach and the adrenal stuff receded a couple hours later--there goes that resiliency I've been missing for almost two years. I am still sick, the stomach flu told me "ve have our vays, you vill pay" and that threat turned out to be true.

I am still adrenal as well, mostly with weakness, but nothing compared to what it would've been in the past. So a victory of sorts.

Now just to win the war on dehydration.

Mixed Bag

Well, Monday was not better. It was worse. At one point I began to fear I was heading for real trouble. I must have done too much on Sunday? I just really felt the need to keep living my life and do things that nourish me as a person as opposed to always being benched by my health.

So I went out to lunch with a friend and caught up. It went pretty well. I felt like I was safe to drive, which is not always the case. I was able to keep up with the conversation even though I lost track of my point a lot.

I thought, 'Wow, I'm getting better.'

Then I had a terrible time getting up. Did not sleep well. Had some muscle cramping, which is really weird as I've not had intermittent steroid withdrawal before. If that's what this is.

Finally felt up to making cookies with the toddler. Filled the CD player with Christmas music and we baked (well she baked and alternately danced). There are now 3 dozen cookies in the freezer ready for the holidays in case I don't feel well enough to cook on the exact date.

After that, I was wiped, but I had promised myself I would make a crock pot meal, trying to stem the tide on the take out. My palate has changed enough with low carb that fast food actually tastes like junk to me now. I can not face anymore bunless burgers from various junk franchises. It tastes like crap. (Exception to the rule: I still like french fries.)

I started shaking a bit and getting some back and abdominal pain. Tired enough to struggle with all the various recipe steps. I did eat. but it didn't help. Felt like my bp was low, but I couldn't check it, and hesitated to add salt as feeling low is not always the same as being low. The remainder of the day was conducted from the couch.

On the upside, I was able to make myself eat all three meals, the first time since 11/2. The hubby said I was much more talkative than I've been, and put in topic requests for football and industrial strength leaf blowers.

Perhaps that was why everything he said just bounced off my ears the other day? Because those are not things that interest me. Nor are they anywhere near my area of expertise. If they are your forte, let me know, I'll hook you up with your new bff.

The mixed bag of symptoms means I won't updose yet. It has to be all adrenal all the time before I'll take steroids, but the uncertainty gnaws at me. I never know if I'm doing the right thing. I never know what will happen to my body or what medicine will do to me next.

I remind myself I have steroids. Heck, the ER even gave me a prescription for Zofran so I don't even have to vomit! I don't have to end up in the ER again, but I still freak when there's weirdness. The crisis shook me more than I realized.

Some anger showed up yesterday as well. Anger that this was all preventable. None of this had to happen to me. This suppression never had to be the most severe and dangerous one I've ever had (even if the taper was the gentlest).

What my body is doing is not outside the realm of medical literature. It's not like no one else ever had this problem. It's not like this has never happened to me before either.

All it would take to save me so much pain and grief is one well read physician. Just one.

Another Adrenal Crisis Patient with High BP

November must be 'have an adrenal crisis' month. And not only have an adrenal crisis but do it with high blood pressure.

Go read the story. It's almost word-for-word what I experienced.

It's nice that the ERs thus far seem to be figuring it out pretty well, but I need an endo who understands it too.

Why is that so hard?

Steroid Withdrawal, Muscle Pain and Notes on an Adrenal Crisis

My muscles are spasming enough that when I raised my hands to put mousse in my hair the other day, my pec spasmed until it sprained itself.

Yes, I am now beating myself up.

Then there are the sustained contractions in my feet, calves,forearms and diaphragm. If I hadn't had them before, I would be terrified. It feels like you're becoming a statue, trying to breathe through stone.

Thank God for Advil.

Made it down to 10mg. It's been a little dodgy. The hubby startled me and my body immediately became short of breath. It was weird.

Tomorrow, down to 5mg. Then we see how that goes. If it goes well, I'm stopping. Can not wait get off this poison.

On the adrenal crisis front, I corresponded with an Addison's patient whose BP skyrockets during a crisis. I am beginning to suspect patients must go low just before they die/start to die. I bet there's a significant adrenaline response initially.

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.

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

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.