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Advocacy

Adrenal Alternatives – What We Are Doing

 

We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases.

Our first mission is to align patients with the proper tools they need to live the best quality of life with this disease. We were founded to connect people in the United States to the resources needed to begin treatment with the cortisol pump. We also work to refer patients to all possible options to help manage adrenal disease. This includes naturopathic practitioners, mental health counseling services, fitness instructors, physical therapists, dieticians, medical professionals, caregivers, other adrenal patient networks and resources.

Secondly, we seek to educate the medical community on the truth of adrenal disease. We teach educational seminars to caregivers, EMTs, paramedics and nursing students through our Adrenal Awareness Initiative.

Thirdly, we seek to encourage the adrenal community with our care package program, where we provide adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.

Fourthly, we are actively working to change legislation that all counties in the United States are authorized to administer the life-saving Solu-Cortef injection, which is not currently the case. Not all EMT’s are allowed to give this life saving medication and most ambulances do not have it on board. We are working to change this on a local, state and federal level. We have aligned with organizations such as CIAAG- Chronic Illness Advocacy and Awareness Group and Adrenal Insufficiency Protocols who actively work to legislate for patient rights. Our fifth project is our upcoming Pumps for Purpose program, where we take donated insulin pumps and supplies and repurpose them to adrenal disease patients actively working with endocrinologists to maintain a better quality of life via the cortisol infusion pump.

Lastly, we are working on creating clinical trials and research to create more technology to manage adrenal disease. Unlike diabetics, there is currently no meter to check our blood levels. Adrenal patients must be constantly vigilant of their cortisol levels, which can drop in an instant. Research and technology advances are desperately needed.

Advocacy

Ilena’s Fight With Adrenal Insufficiency

A personal post from foundation contributor, Ilena Bickley

 

March 25, 2019

Now that I am over that horrible sickness (minus the fact that my mouth still has a metallic taste and I can’t really taste food), I was able to get back into my workout routine. I am really trying hard to listen to my body, not over do it, and to be ok with having to take it slow. It’s not easy, but I am doing my best.

Being sick took me out of the game for 2 weeks, which isn’t to bad. I also had a conversation with my Gastroenterologist about the stomach issues. This one is the one who is really interested in Addison’s Disease, she knows a lot about it and has been amazing. My other gastro, not so much. I am glad she reached out to me to see how she could help. She had me do an X-ray to see if my bowls were eliminating all the way, which they weren’t. She suggested that I do milk of magnesia every other day, and see if my symptoms would improve. She told me that when the bowls don’t eliminate all the way, it will cause bloating, nausea, pain, and other things. I don’t know why the other gastro didn’t do this. I have been doing the milk of magnesia since March 15th, and it has made a huge difference. I get just a little bit of bloating, but it goes away really quickly. Doing this has also helped with some weight loss as well.

The ablation that was done on my back has been so great. I haven’t had any issues. I am still careful because some positions irritate it, but overall I would say it’s about 80% better, which is phenomenal. I have been able to sleep a bit better (not great, but better), giving my body more time to heal.

My workouts have been slow going, but like I said, slow and steady wins the race.
I am running 1 mile and then doing light abs, legs, and arm workouts. Yesterday I noticed my stomach has been shrinking, which is AWESOME!!! I know if I continue to listen to my body and just take it easy, I can make it back to more intense workouts. Some days it takes away most of my spoons, but I am ok with that. I guess one good thing that came out of the weight gain, was that I got 2 new pairs of jeans that I absolutely love.

I am looking forward to adding a little more to my workout routine in April and running a little bit farther. I know that I will not be ready for the 10k that is in May, that I really want to do. If I pushed myself, I am sure I could, but I am not willing to put my body through so much yet. I am trying to focus on just being happy with who I am now.

April 23, 2019

My April didn’t go as planned. I was hoping that I would be out running and enjoying the amazing weather we are having, but my body had a different thing in mind.

I know that I was pushing myself more than I should have. I was still ignoring the tremors in my hands and legs. I was trying to prove that I could do all the things. My body quickly reminded me that I am not allowed to do all the things. I woke up at 3am on April first. My dog was scratching at my bedroom door, because she had to use the bathroom. As I sat up, I noticed that my head was shaking (like I was saying no), and that I felt the room was spinning. When I tried to stand, my legs couldn’t support my body. So I crawled to the door and let her out and then crawled back to my bed. I woke up around 9:30am and the dizziness and head nodding didn’t go away. I was able to get to the bedroom door and as I poked my head out, I told my husband that I was really dizzy. He said “your head is shaking.” I replied “call 911.”

I don’t remember them coming. I don’t remember being driven to the hospital. I don’t remember getting there. I was unable to keep my eyes open. I was having full body tremors, that I was not able to control, I could not walk or even lift my legs, and my speech was slurred and stutter (if that is a word). They ran so many tests on me. I had a full spin MRI, brain MRI, tons of bloodwork, and a spinal tap. They kept telling us that everything looked normal, but what was happening to my body was far from being “normal.”

They hospitalized me and I was sent to the neurology center of the hospital. Since I was unable to move, I had to use a bed pan. That was really embarrassing. I was also not allowed to eat, because I could barely swallow my water. I went 4 days with no food. Around day 4 was then upgraded to mechanical lift. I was also getting the tremors to calm down a bit, but my speech was still pretty messed up.

I was given heparin shots, which left some nasty bruising, and blood was taken every morning. On day 7, I was able to lift my legs just a little bit, but not enough to hold my weight. PT came in and worked with me, to see what the next steps would be. I again graduated to, solid foods, but only baby food type of food. At this point I realized that I hadn’t had a BM in 10 days. They started me on milk of magnesia, stool softener, and miralax. Just to remind you, I am still mechanical lift only or bed pan. Not only was it embarrassing to have a nurse and CNA come in to toilet me, my period decided to come early (talk about kicking you when you are down).  It wasn’t until the 9th, when I finally had a BM. It sounded like 2 small rocks hitting the bottom of a plastic bucket, and that was about what it was. None of the doctors or nurses seemed to be concerned about it, but I was worried. They just kept me on the laxatives and hoped that I would finally have a good BM.

On day 9, I was able to put a little weight on my legs, but still not enough to go far. The doctors decided to move me into inpatient Rehab, so that I could learn how to walk and build up some strength. The tremors had calmed down a lot more, and the speech was starting to get better as well. The less I moved and talked, the better talking and tremors got.

My first day in inpatient rehab, I was taken to my room and the nurse came in and got my vitals and checked me in. All I wanted was a shower, after not having one for 9 days, using a bed pan, and on my period. I JUST WANTED A SHOWER. But I was told no, not until PT and OT saw me. I was so mad.

At dinner time, so when they brought me my food, the nurse also had papers for me to sign. As I was signing, I noticed how foreign my hand felt. It was like I didn’t have control of it. I was able to sign one page, the next page-my hand started shaking really bad and then the tremors started acting up. The third page, my brain and hand were not communicating at all. I knew what I was supposed to write, but my hand had no clue what was going on. I told the nurse I would sign it later. When she left, I broke down and completely lost it. I was so terrified of what was happening to my body. I didn’t know what to do, so I just cried. A CNA was coming in and I yelled “GET OUT AND SHUT THE DOOR,” and she moved quickly. I recorded a video in this moment, because I wanted to be able to look back at it and see me at my lowest point.

I was able to sleep, which was nice. About 7am the OT came in and told me it was time to shower. I was in heaven. I took way to long in the shower but I needed it. I felt human again. Going through OT she had me put 9 pegs into a board and then had me take them out. She timed me on each hand. The right hand it took me 54 seconds and with my left hand it took me 44 seconds. In doing this, the tremors got worse and my slurred/stutter speech came back. Later that day PT came and had me try to walk. I was able to take a few steps, which was good. My right leg didn’t feel like it was mine. It felt like I had been given a prosthetic leg and then told to walk. It was just not cooperating with my body. Each day I did get a little stronger. I gave the nurses a really hard time. I was constantly getting scowled for not calling them for things.

Finally I was released on April 15, 2019. I was so happy to be home. I have a lot of adjusting to do, but I know that I am strong.

One thing the doctors were not putting together was my Addison’s disease and how this played a factor. Not one of them knew a thing about Addisons and kept trying to dismiss it. They said that these symptoms were brought on by stress. And if they knew ANYTHING about Addisons, they would have been able to factor that in. I also learned that I had Acute Kidney Injury, after I got home and printed out all my test results from my 15 days there. I was NEVER told about that. I also had 5 other diagnosis that I was not told about and 1 was dated all the way back to 2014 (a year after I was diagnosed with Addison’s). I have been denied disability, but I did apply again after this newest diagnosis. I also got in touch with a news caster and emailed him my story on Addisons disease and how disability is viewing it and how the judge made the remark “If you can handle the stress of your autistic son, why can’t you handle the stress of a job?” I was sickened by this comment.

We really need to raise awareness. This disease is so debilitating and only gets worse with time, especially if you have other underlying illness. I am hoping that I can help change that. I have been sharing other people’s stories on my podcast (found on my blog page), hoping to raise some much needed awareness.

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Advocacy

Steroids Save Lives Campaign

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Adrenal patients need steroids just like diabetics need insulin, but awareness on adrenal disease is not as common as awareness on diabetes is.

We’re going to change that.

We’ve lost way too many in the adrenal community due to lack of steroids.
It’s time the truth of adrenal disease was told and this foundation is doing all we can to advocate for all forms of adrenal disease!

We invite you to join us in our social media awareness campaign #SteroidsSaveLives

Upload your awareness photos to social media and use the hashtag #SteroidsSaveLives to help us raise awareness that steroid medications are necessary for life in those with adrenal insufficiency!

We are going to END steroid shaming.

We are going to spread the message that steroids are necessary for adrenal patients to live.

No one should feel guilt for being on medications that keep them alive. 

STEROIDS SAVE LIVES! 


Tag @AdrenalAlternatives on instagram or
@AdrenalAdvocate on twitter. 


It’s time the truth of adrenal disease was told!

SteroidsSave (2)

Advocacy

What is the Cortisol Pump?

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What is the cortisol pump?

Basically, the cortisol pump is a repurposed insulin pump that delivers solu-cortef instead of insulin.

The use of solu-cortef (injectable version of cortisol when mixed with saline) is placed in an insulin pump that is programmed to disperse cortisol according to circadian rhythm dosing by programming rates of basal delivery into the pump. The pump also has options to bolus for stress dosing.

This helps adrenal patients maintain better control of their cortisol levels by allowing them to get cortisol quicker instead of waiting until steroid pills metabolize through the stomach and finally enter the bloodstream.

This therapy bypasses the gastric system and is able to deliver cortisol in a more consistent way. With a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral cortisol replacement tablets. They are able to sleep through the night without having to wake up to take steroid pills.

This can be of great benefit to adrenal patients who are hypermetabolizers of cortisol. Some patients have to take medications more frequently than others due to their body’s high cortisol clearance rate. The pump is a great asset to these patients because they are no longer forced to take pills every couple of hours around the clock.

Side effects due to mal-absorption can be decreased and patients have been reported to have improved sleep, weight management, gastric issues and experience an overall improvement in their energy levels and sense of well-being as opposed to taking steroid tablets.

Professor Hindmarsh, of CAHISUS is a pioneer for this life changing treatment.

For more information on the medical information visit his website-http://www.cahisus.co.uk/pdf/USING%20THE%20PUMP%20METHOD%20IN%20ADDISON%27S.pdf

The pump is not a cure for adrenal disease and is difficult to obtain. This treatment is relatively an unknown in the United States and this foundation is actively working to raise awareness on this alternative treatment to managing adrenal insufficiency.

It is a difficult process but it IS POSSIBLE!  For more information please read our article on HOW TO GET ON THE CORTISOL PUMP.

If you feel you could benefit from the cortisol pump, speak with your endocrinologist but be prepared to hear “NO.”

Don’t lose heart!

There are doctors in the USA who will manage this treatment and we hope to continue raising awareness so that one day it will be as available to adrenal patients as it is to diabetics.

We’re here to lead all adrenal patients to every adrenal alternative!

 

 

 

 

 

Advocacy

HOW TO GET ON THE CORTISOL PUMP

 

 

HOW TO GET ON THE CORTISOL PUMP-

Step 1- Assess your life, health and disease management.

The cortisol pump is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on the steroid replacement pills, the adrenal pump is excess money and effort you may not need.

The pump is NOT an easy thing to acquire and the fight to get one takes a great deal of trouble, mental stamina and resources.

You need to consider whether this is something you actually need or not.

Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump

That being said, If you are struggling with your quality of life this treatment may help you.

Step 2- Research, Learn and Educate for yourself!

Adrenal insufficiency is a rare disease not widely understood in the medical community. You need to become an expert on your own health, especially if you are attempting to get on the pump.

Most doctors barely know anything about adrenal disease. They have been taught that replacement therapy with pills is the only treatment and that patients live a normal life with this disease.

Nothing could be further from the truth.

You need to understand your specific health concerns.

Information you need to know-

What is your diagnosis? Do you have primary Addison’s disease, secondary adrenal insufficiency, tertiary adrenal insufficiency or congenital adrenal hyperplasia?

If you are unsure, here is a link to Understanding Adrenal Disease

What is your quality of life? Are you able to work, drive, do housework or function normally?

What have you tried to manage your adrenal disease?

Typically an endocrinologist will not even consider the pump until you have tried EVERY oral steroid possible.

What is your current daily dose of replacement steroid?

How much are you stress dosing?

What other medical issues do you have?

Are you able to afford the supplies and medication needed for the pump? Insurance does not typically cover “off label” treatments.

 

This disease is expensive and life threatening if left untreated. If you have A.I you HAVE to have some sort of steroid replacement to stay alive.

Just educate yourself on everything you need to know. You will have to present YOUR case to an endocrinologist to get the cortisol pump. Which brings us to the next point.

Step 3- Finding An Endocrinologist

This will be a difficult part of your journey to the pump. Finding an endocrinologist that understands adrenal insufficiency is a needle in a haystack and then finding one who will be brave enough to attempt guiding you through pump therapy just adds to the challenge.

Prepare the best case possible. Send your research, your health information, everything you can to the endocrinologist BEFORE your appointment so they are aware of your intentions before hand. Write a letter to the endocrinologist explaining diagnosis, failed treatments and desire to be on the pump.

You will have to fight to find a doctor willing to write the script for the pump. It will take effort, lots of research and a mental stamina.

Step 4- Battling the Insurance Company

Adrenal Insufficiency is documented to be treated by oral steroids and not by the insulin pump. Be prepared to be on the phone for hours and be told incorrect information. Just be aware that you will have to tell the same story to a different agent over and over and over again. Don’t give up.

 

Step 5- Getting A Pump & Supplies

If your insurance cooperates and provides you with a pump and supplies, GREAT! But I’m pretty sure with A.I it won’t be that easy.

Take heart, there are other options.

There are many ways to obtain a pump and supplies: Diabetic Barter Sites, Facebook Groups, Craigslist and Ebay.

The internet is a plethora of connectivity. You can find what you need, you just have to put in the effort to look.

Step 6- Waiting for the Pump

If you are not doing well on pills, switching to subcutaneous injections of solu-cortef may be an option while you are waiting.

To figure out your dose, You need to convert it from oral milligrams to liquid solu-cortef.

2 units= 1mg if you are doing a 2:1 ratio with actovials of solucortef.

You can also run a 1:1 ratio with 1ML of saline per 100mg of solucortef powder vials.

You also need to dose according to the circadian rhythm percentages.

Circadian dosing method example-

6am and 12 noon 40%

12 and 6pm 20 %

6pm to Midnight 10-15%

Midnight and 6am 25-35%

Source for the dosing is based on Professor Hindmarsh’s research (link posted below)

http://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf

Use solu cortef solution and inject with insulin needles.

The standard recommendation is to have lab testing to see how quickly you absorb and “use” the cortisol in your body.

You can have cortisol clearance testing done but it is not typically covered by insurance. It is beneficial to creating proper rates for your specific needs. A pump is only as good as the information programmed into it.

Step 7- Staying Sane

The process to get on the pump is long, obnoxious and detailed. No one should have to fight for years to get better quality of life. The healthcare system is broken and changes need to made. This stands for all diseases and treatments, not just adrenal disease.

Everyone should have access to a better life.

Take heart friends, Our voices will be heard.

This foundation is dedicated to adrenal disease advocacy.

 

Uncategorized

Understanding Fludrocortisone

This was written by an Addison’s disease patient and is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

DISCLAIMER- NOT TO BE USED TO REPLACE MEDICAL CARE OR GIVE MEDICAL ADVICE

I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

What is Florinef  “Fludrocortisone?”

Medication used as partial replacement therapy for adrenocortical insufficiency and for the treatment of salt-losing adrenogenital syndrome.
May also be used for treatment of POTS syndrome. A potent mineralocorticoid medication used to replace aldosterone in adrenal insufficiency and salt wasting syndromes.

What are Mineralocorticoids?

A class of steroid hormones produced in the adrenal cortex and influence salt and water balances in the body. The main mineralcorticoid is aldosterone.

What is Aldosterone?

Aldosterone affects the body’s ability to regulate blood pressure.
It sends the signals to the kidney to regulate the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine.
It causes the bloodstream to re-absorb water with the sodium to increase blood volume.
Aldosterone also helps maintain the blood’s pH and electrolyte levels.

Understanding Aldosterone-

Aldosterone is closely linked to two other hormones: renin and angiotensin, which create the renin-angiotensin-aldosterone system. It is essential in regulating proper blood pressure and electrolyte balance in the body.

What is Renin?

An enzyme secreted by the kidney that is part of a physiological system that regulates blood pressure. In the blood, renin acts on a protein known as angiotensinogen, resulting in the release of angiotensin I.

What is Angiotensin?

A group of hormones that are part of the renin-angiotensin system.
To create angiotensin, the liver creates a protein called angiotensinogen. This protein is broken up by renin, which comes from the kidney. This forms angiotensin I. Angiotensin I passes through the bloodstream, where it turns into angiotensin II, which is the primary form of the hormone that affects blood pressure and other areas of the body.

Explanations-

Simply put- Proper aldosterone levels are essential to the synergy of chemicals in the body.  In adrenal insufficient patients- fludrocortisone is used to synthetically balance electrolytes and blood pressure levels.

Dosing-

With any other steroid medication, general recommendations are to start out on the lowest dose possible and adjust according to blood renin levels and electrolyte levels determined through a blood metabolic panel lab result.

Warnings-

Fludrocortisone is a potent medication that directly affects cardiac function.
Too high of a dose can lead to high blood pressure, stroke, swelling, weight gain and mental disturbances. Be vigilant of any changes your body is presenting and contact your doctor if you exhibit any of these issues.

Sources-

https://www.rxlist.com/florinef-drug.htm

http://www.hormone.org/hormones-and-health/hormones/aldosterone

https://www.britannica.com/science/renin
http://www.hormone.org/hormones-and-health/hormones/angiotensin

http://www.sciencedirect.com/topics/neuroscience/mineralocorticoids

The Hormone Health Network

Science Direct

Uncategorized

Mania, Psychosis and Steroids- Jen’s story

All medicines come with side effects, some good, some bad. The corticosteroid, Hydrocortisone, is no exception. When I started taking Hydrocortisone, I remember reading about the physical side effects and thinking to myself “Well, this is a medicine that is literally saving my life, so I can deal with a few side effects.” However, neither one of my doctors or my pharmicist warned me about the psychological side effects of Hydrocortisone, so when those popped up, I was left feeling confused…and yes, I’ll say it, I ended up feeling “crazy.”

At first, I felt super happy. My anxiety had decreased, I felt less “sick,” I had more energy and felt somewhat normal again. I had a euphoria that felt almost as if I was “high on life.” What I didn’t realize is that Hydrocortisone actually does affect the areas of the brain that manages the regulation of serotonin and dopamine, the “feel-good” hormones.

Feeling happy is a great side effect to have. However, as time went on, other psychological side effects popped up that were not only startling but also very scary. And what scares me even more is the fact that not one doctor that I have seen, both in the hospital and out of the hospital, since being on corticosteroids, has told me that there are mental side effects of being on them. Not to completely pass blame to doctors, as I think a lot of it has to do with lack of knowledge.

The Subtle Mental Side Effects

Side effects can have a wide spectrum, so when you do experience having them, you may not think of them having anything to do with a medication that you weren’t told would cause any mental side effects in the first place. Subtle side effects that I had were anxiety, agitation, irritability, insomnia, lack of concentration, lack of focus….just to name a few. When I talked with my doctors about these symptoms, I was told to take a sleep aid, to take things for ADHD, I was put on two separate anxiety medicines, and even on an antipsychotic medication. I finally drew the line when my doctor wanted to add an antidepressant into the mix.

The Not So Subtle Mental Side Effects

When I was on oral Hydrocortisone, I was sick a lot. I spent a lot of time in the hospital and even though my body required high doses of steroids while I was in the hospital, the doctors didn’t warn me about the psychological side effects of being on high amounts…and more importantly, what can happen when you go from being on a high amount to all of a sudden going back to a normal dose, without tapering. When I was in the hospital, and on high amounts, I felt manic and didn’t sleep. Whenever I went home and went down to my normal dose, I felt lethargic and depressed…thinking it was just a normal emotional response from being in the hospital.

And then…one of the worst possible mental side effects appeared into my life overnight… corticosteroid-induced temporary psychosis…

Choo Choo….All Aboard The Crazy Train

Have you ever wondered what it would be like to wake up one day and be Superman or Superwoman for a day? How about for a few weeks? Imagine feeling the happiest feelings you’ve ever felt in your life and how nothing and no one could take that feeling away from you. Being on top of the world, not needing sleep, having zero fears, laughing all of the time, spending money like there were no limits on your bank account, feeling like you no longer “need” to take any medications, including your corticosteroids… Sounds great, right?

Although I have never experimented with drugs, I imagine that you could probably compare it to the feeling of being “high” 24/7. I felt like my brain was working at top speeds. Not only my brain though…everything I did was at top speeds. I worked a lot of extra hours, I was creative, and I felt like the Energizer Bunny. I had no idea where this “new me” came from, but I loved her! And at first, my family also loved her. My kids thought that I was hilarious and really fun to be around. They loved that I was spending a lot of money on them and had a Y.O.L.O outlook on life.

But after a while, my husband and family started getting worried about me. I did a lot of online shopping and would unintentionally order multiple items, thinking that I only ordered one, but when packages just kept arriving, I justified “needing” 20 new pillows, 2 different colored sets of pots and pans, 3 different pairs of sunglasses for my husband, and a lot of other things that I can’t even remember. I gave my daughter my debit card and told her to go on a shopping spree, bought my son a cell phone for Christmas in “October,” took my daughter to get a piercing just because she wanted one, and was about to just randomly get a new tattoo, until my husband called and the kids told him what I was about to do. That night, he “grounded” me from my debit card and my car keys.

I also abruptly stopped taking my anxiety medications, and got to the point of not taking my Hydrocortisone like I was supposed to either. I thought that my Adrenal Insufficiency was completely healed and that I did not need Hydrocortisone anymore, but I didn’t tell anyone. I kept having symptoms of being low in cortisol and when my husband asked when the last time I took my steroids, I couldn’t honestly remember. At one point, he had to threaten to give me an emergency injection because I refused to take my pills.

Once he realized that I was putting my life in danger by not taking my life-saving medications, he called my doctor. She basically told him not to worry, and explained to him that I was experiencing a corticosteroid-induced temporary psychosis from going from a high dose in the hospital to my normal dose, without tapering. At that point in my treatment, I had no idea what tapering was. My doctor had never mentioned it, the doctors in the hospital never mentioned it, and I was following their orders of going home and going back onto my normal dose. She did order an MRI of my brain to rule out a tumor, but told him that we just had to “ride it out.”

Please Fasten Your Seatbelts…The Plane Is About To Crash

Ok, so imagine having extreme mania (on top of the world, no fears, tons of energy) when you went to sleep one night….and waking up the next day feeling scared of your own shadow, lethargic and completely depressed. When the psychosis wore off, it wasn’t something that happened slowly and over time. It was literally like someone had gone into the electrical box in my brain and reset the breaker, but decided to leave the switch off for a while.

I literally would sleep for 20 plus hours a day, only really waking up to take my medications and sometimes eat food. When I was awake, I was full of anxiety and depression. I not only was terrified of talking to people, going places, but I was convinced that I was dying.

Thankfully, I was never suicidal, although I have read about people becoming suicidal, as another mental side effect. Because we are so wired to listen to doctors, the advice of just “riding it out” was what my husband did.

It wasn’t until recently, when I was researching the psychological side effects of corticosteroid use, that I discovered that there are recommended treatment options to safely bring a person out of the corticosteroid-induced temporary psychosis.

Does The Story End There?

I wish I could say that was the last time I experienced any kind of mental side effects from the steroids. Unfortunately, I have had my share of them…. Having Adrenal Insufficiency is a very difficult disease to manage for most people. Just when you “think” you know everything there is to know, something will pop up, leaving you questioning everything you know about it. Like I said, I recently was researching the psychological side effects of corticosteroid use. I definitely “knew” that there was a connection, but honestly only thought about the temporary psychosis part being an issue.

After that episode of temporary psychosis, I still had side effects…I just didn’t link them to the steroids.

Over the past few years, I have continued to have issues with the “subtle side effects” and totally brushed them off. I have had a LOT of things go medically very wrong with this disease, and have been paralyzed twice with the inability to speak, and have also “died” and had to have a major emergency surgery to keep me alive. This brought on severe PTSD, but even with therapy, I still had those “subtle side effects.” This past summer, when I switched from oral Hydrocortisone to the pump, I finally felt amazing. Things had started feeling “normal” again. My “subtle side effects” had been diminishing.

But right before I had started on the pump, I developed an infection in the hospital, which did not go away. My doctor “guessed” at the kind of infection I had but never took a culture of it, and I followed the recommended protocol of increasing my steroids with a triple dose while I was on antibiotics. The infection persisted, so I was on several bouts of antibiotics. The high amounts of steroids lead to another case of corticosteroid-induced temporary psychosis. Although it was not nearly as extreme as the first time, and it took longer to appear, and didn’t last as long, it still made a major impact on me emotionally. Since the severity was less, it was harder for my loved ones to recognize and be sure that it was actually “psychosis” that I was dealing with. Although I kept denying that I was in “psychosis,” I still was unable to think “clearly” and I ended up making the decision to go from a high amount of steroids down to my normal dosage overnight.

This made me “crash” right away. The “crash” symptoms were the same as before, but since I had done a drastic decrease in my steroids, and I still had the infection, all of a sudden, I had extreme physical symptoms that I was dealing with at the same time. I was then hospitalized for two weeks, had very rare, unexplainable physical side effects from my infection and ended up coming home with multiple holes in my body and a home health care nurse coming to my home to help me recover…all while still dealing with the “crash” emotional issues. PTSD came back full swing, I had severe depression and anxiety, I completely withdrew from social media and from any social interactions with people. I was totally housebound once again and just the thought of getting into a vehicle brought me to a full on panic attack and endless tears.

How could I have allowed this to happen to me again? I was so distraught that I didn’t even have the strength to seek out help from the people that helped me so much in the past. When I was in the hospital, I luckily did have a doctor who seemed very knowledgeable and told me that this happened because I had not tapered. We had a long discussion about the emotional side effects it caused for me and what to do in the future. It still took months for me to come to terms with things. I wanted so badly just to return to a normal dose and not be dependent on a higher dose. However, I knew that with the trauma that my body had been through, I had to be patient and taper down very slowly.

Knowledge Is Power

Since I got home from the hospital and got to the point where I was not crying at the drop of a hat, I was able to monitor my emotions better and take control. Although I did not realize it at the time, the “subtle emotional side effects” became my focal point of things I wanted to conquer and take control over. I reached out to a trusted friend, who helped me come up with a good dosing schedule, I did a lot of self-reflection of what I wanted in life, I read a lot of self-help books, watched a lot of funny movies, and just focused on being happy and present. I evaluated every single thing that was going into my body, whether it was medications, supplements, food, etc. If it didn’t “feel” right, I cut it out of my life. Anything negative that I was holding onto was the first thing to go.

I was then able to completely get off of all prescription medications, including my anxiety medications, except for the steroids. I added in extra supplements and antioxidants that helped promote healing. I no longer need a sleep aid in order to sleep at night. I’ve done a lot of research about the emotional side effects of steroid use, so I’m very careful now with changing my dosage amounts, even when my body is requiring more coverage.

And now that I do know how they specifically affect me, I’ve been able to share my knowledge with my husband and my family so that they can help me to identify any red flags, if they happen to come up in the future. Every single hour can be different for someone with Adrenal Insufficiency who is on steroids and needs to be able to “live” their lives. I am now at a point in my life where unless something pretty major comes up, it’s almost as if I don’t even have the disease. I’m personally conscientiously aware that it is still very real and very much a huge part of my life.

However, for the first time in years, my husband and my kids are able to breathe again. They no longer see me as being “sick.” We enjoy life as much as possible together and once in a while, when I catch a virus or something, they ask me if I’m making sure to updose, not only for the physical aspects of it, but also because they know what it does to me mentally and emotionally.

And this, my friends, is my “new” normal.