Wednesday, September 4, 2013

The Nightmare, Revisited

Remember The Nightmare? We have answers.

Doctors downplay an Addisonian Crisis. If I take my medicine daily, I should never have one. Now there are certain triggers that I must watch out for. If I am running a fever, vomiting, or suffer from an unexpected yet severe injury, I must seek extra medical help immediately otherwise I could quickly die. But day to day living should not send me into a crisis. Recall Endo 3's phone call with me in the ER, "Amber, I don't think there was any way you could have gone into a crisis. You take your medicine daily. No. Are you sure you aren't depressed?"

One of the trickiest things about this disease is the health decline happens so gradually that many people do not fully realize how sick they are until it is too late. On April 19th, I did not wake up feeling amazing and then suddenly crash towards full blown crisis. My health had been slowly declining for months. Because it was so gradual, no one prioritized it. I did not even have the words to express how bad it had gotten.

It all started with weight loss.

Side note: I also went through many different hair styles my last year of college.
July 2011. Aug 2011. March 2012. May 2012.
I was shocked when I fit into that size four dress. I tried it on as a challenge.
I started losing weight at the beginning of my senior year of college. I didn't change anything about my medicine, diet, or lifestyle. I didn't even realize it until a couple people started commenting. When I finally weighed myself, I had dropped a couple pounds! I graduated college and began working full time August 2012.

The problem came in the fact that I was still losing weight! I couldn't rationalize it, which made me nervous. Add to the fact that any time I ate a meal I felt sick. I could never figure out what part of the meal was making me feel sick, I just dreaded eating.

But not only was I feeling sick, I was also getting sick. An ER trip in November ruined my two year ER free streak. Christmas, I was sick again. I actually stress dosed my medicine on Christmas Eve and still slept through the entire day. I could not move from my bed. New Years, again, sick. I came really close to collapsing in the urgent care clinic on January 2nd. (Want faster medical service? Turn super pale and black out in front of the waiting room. That'll get you noticed!)

And the weight kept coming off. 

October 2012.
I ended up losing a little over 30 pounds and dropping four pants sizes. While some women rejoice at that thought, it frightened me. My weight is a function of my health. If my medicine is correct, I should neither gain nor loose weight. Yet I was a 5'8" female with size fours falling off of me. Something was wrong.

I tried reaching out for help but was met with answers such as "anxiety" or "depression." Medical community, why are you so quick to label? Yes, I had started a new stressful job. Yes, I told you that eating food made me feel sick so I dreaded eating. Yes, I had lost 30 lbs without trying. But do not call that depression! I, a fairly intelligent human being, am telling you that it is not depression. Look for the true root cause!

The week of the nightmare, I knew something was wrong. Several co-workers were concerned about me because my dizziness had increased drastically. I actually got super dizzy during a run and fell, bloodying up both of my knees and my hands.

I'm smiling in this picture as my knees are still bleeding.
I was so dizzy and out of it that Wednesday before my crisis.
I knew I was on very thin ice. Heck, that's why I went to my endo on April 19th! That's why I took the appointment with the PCP immediately afterwards. Yet no one realized truly how sick I was until the seizures hit due to the impending crisis. And they didn't realize how desperately I needed help to become stable again until I was in the ER two weeks later

Priority was finally escalated. I could no longer drive. I would get energy crashes that would cause me to either black out or barely be able to move and unable to speak. I was scared to live alone so my mom moved back in with me for half of May and all of June.

Eight different specialists, countless doctors appointments, and who knows how many medical tests later, we have answers. What caused the Nightmare on April 19th?
  1. My steroid dose was much too low. I was on less than half of the recommended daily dose for my medical condition.
  2. I was being poisoned by the generic hydrocortisone Qualitest. Every single time I took my life sustaining medicine, I was having a reaction to it. Talk about frightening.
  3. I was severely B12 deficientCheck out the symptoms of low B12. I'll most likely remain on the B12 shots for life.
  4. I have a gluten sensitivity. Take that medical community! I wasn't feeling sick after every meal because of depression! Try food sensitivity! </rant>
  5. I was diagnosed with POTS. It turns out my heart rate should not jump 40-50 bpm any time I change position.
Each of these answers contain actions that I can take to improve my quality of life. We've increased my daily steroid dosage. I will now only take brand name Cortef. I have gotten used to giving myself B12 shots. I am eating Gluten Free as of September 1st, 2013. We're still working on getting the POTS under control. But honestly, I've been suffering with that for as long as I can remember. Just don't expect me to stand up quickly. I'll fall over.

While the climatic crash in the PCP's office happened quickly, I had been slowly heading towards the crisis for well over a year. These types of crises never just happen. They are always triggered. But knowing the trigger allows you to prevent the next one. These life style changes will allow me to remain Clearly Alive for quite a while. I haven't felt this "healthy" ever. I am in a really good spot, and that is exciting.

PS- On the weight thing, I have gained back over 20 lbs. I'm at a healthy weight again!

July 2013. It was windy in the windy city.

18 comments:

  1. There is such a great peace in having answers even if they are not cheerful. Now you know what to do and what warning signs to look for. I hate that you have had to go through so much. I really appreciate you sharing. My mom's story mirrors yours so much. I should write more about it. I think I just remain too confused to make sense of it all though. Be gentle with yourself. Thank you for sharing.

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    1. It took me quite a while before I could make sense of this. It was two months before I could put down in writing what happened on April 19th. It was three months before my mom could record her version. And it was only this past weekend that I could summarize the crisis triggers into a five point bulleted list.

      I hope that you are able to write about your journey with your mom. I am pretty positive I don't need to inform you how therapeutic writing can be :) And I'd love to read about your path.

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  2. I have Addison's Disease as well so I found this story interesting. My case is not nearly as severe is seems, and I don't have any of the other symptoms you seem to possess. I do just have to make one comment b/c I am a bit of a spelling and grammar snob... It's "losing" and "lose." As in you were losing weight. Not loosing and loose to describe your weight loss. Loose means not tight. Anyway, other than that very enlightening.

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    1. Fixed :)

      Amazing, I can have three to four proof readers and still have small things slip through the cracks! Thank you for pointing it out. I am a perfectionist with my writing, but a horrible horrible speller. It makes for a fun combination.

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  3. Only <3 <3 <3 <3

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  4. How did you find out that you were allergic to your prescription medication? I'm going through a rough time myself, and wondering if it might be that...

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    1. I started tracking the episodes of my energy crashes/black outs. I realized they started to come on around 20-30 minutes after I took any HC and they would hit full force within 45-60 minutes. This did NOT make sense to me. Low cortisol causes you to be incredibly fatigued and unable to move. Also, HC starts to hit the blood stream 20-30 minutes after you take it. Why was I experiencing low cortisol symptoms supposedly when the cortisol was just getting released?

      After weeks of tracking this with notes and graphs, my mom and I decided to run a simple experiment. Next time I got the HC filled, I requested brand name Cortef. The pharmacy ordered us the brand name without issue, I just have to pay more because of my insurance.

      After about two weeks on the Cortef, the energy crashes went into remission. Also, a couple other crazy things happened. I had a persistent low level headache. That went away with the Cortef. I had been complaining of constant nausea for MONTHS! That went away with the Cortef. I had forgotten what it was like to not feel like I was going to constantly vomit.

      I am not sure what is in that generic HC that caused my reactions. I do however know of several others that I have communicated with that also have discovered they are allergic/sensitive to the generic.

      If you are allergic to the generic, you will begin to feel better day one of Cortef. But it takes about two weeks for it to fully kick in.

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    2. That's really incredible. Thanks for responding so quickly. I'm definitely going to keep an eye open for those kinds of things.

      I wonder if it's possible to be fine and then develop an allergy over time? I know that sometimes food allergies, for example, only appear later in life as the body on becomes allergic later. Maybe this can happen with cortisone brands as well - or something specific in them.

      Wish me luck - I'm getting dermatologist results tomorrow. Hopefully getting to the bottom of what's been bothering my skin for months!

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    3. The manufacture might have changed with the generic HC, which would explain the sudden increase in symptoms and ER visits for a good number of us with Adrenal Insufficiency.

      Or it's entirely possible to also develop the allergy/sensitivity over time. It is somewhat terrifying to think about, so I normally force my brain to stop on the fact that the Cortef fixed my issues.

      And oh the dreaded yet highly anticipated results day! I hope they find something! I will get hives when something is just "off" with my immune system, but it's never plagued me long term. Max has been one miserably long week. It doesn't sound like that's what is causing you grief though.

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    4. Another day - another doctor who has no idea and isn't listening. *Sigh*.

      Maybe I should stop stressing and it will die down? It was going away for a little while and then got worse again.

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  5. Wow, I have been having similar symptoms with my HC as well...I'm so tired of this headache and nausea! And I recently noticed that the manufacturer of my HC has changed. Do you know what the conversion of 20mg HC to Cortef would be? I couldn't find Cortef on any conversion chart. I have an appt with my Endo tomorrow so I'm going to ask! What does your new Endo think about Cortef vs HC? Thanks for all of this info Amber, it's so helpful!

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  6. Oh ok, I think I was confused, Cortef is HC it's just the brand name...got it! It's late ;) I'm going to ask my pharmacy tomorrow if they can order it for me! Sorry about my previous comment :)

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    1. Not a problem! I hope your appointment goes well :) (And parking at that MASSIVE building isn't too freighting!)

      You can ask your endo about it, but I found the pharmacist more helpful. And my pharmacy has actually told me there are now two of us that are on "Cortef Only." Something has changed recently with that generic HC. I will gladly pay a couple extra dollars each month to NOT feel constantly sick!

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  7. It went really well, after every appointment I am just more and more thankful for this new doctor! She knows what she's talking about and she is more than willing to share info with me...which I love! My husband went with me yesterday so he just dropped me off at the door so I didn't have to park, but just getting to the door of the building took forever, it's always so busy there! I just picked up my Cortef from the pharmacy so I hope I start feeling better soon. Thank you for blogging about it, I would never have known or thought to ask for brand name. But I did notice that my headaches, dizziness and nausea all started around the time the manufacturer of my generic HC changed. Crazy stuff!

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  8. Just reading your posts about the Cortef vs generic HC. I vaguely remember seeing on a forum somewhere that they had changed the import country of the generic brand which may explain why people are now having problems in the States.
    Glad you have found out some of the causes of your crises'.

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  9. Amber, when I read all what you had to say...it was like you were painting my picture. I feel, I am on that same road that you're on and even the POTS matches up to me. I have yet to be dx'd with that, but all the signs point to it. I explain why that I think it is POTS below.
    I have been told by Lisa(in our Addison's group) that I sounded like I had it. I can't get up fast either and have a lot of dizzy spells. I feel that the room is spinning sometimes and almost fainted a couple of times. Feel kind of hollow eyed.
    Amber, you and I bot have the Addison's and I wonder, if you have the Fibro too. So many similarities. When, I finally was dx'd with Addison's I was heavy and never have been heavy a day in my life. I don't know how the weight came on me so fast, then I lost it fast too.(64 lbs. in 3 mos)
    Here is why I think, it could be POTS. One night, at 3:30 am..I had an episode that felt like hard rain was hitting my entire body. Creepy tingling feeling all over and my face started feeling numb..or more numb than, it already is. But when I sat up, my eyes went dark. I was so afraid, but didn't call 911. I don't know why because I really needed to go. I slowly got up and the room was spinning and my eyes were so dark. I knew that I was going to faint, if I didn't lay back down. So, I laid on the floor and prayed. I noticed that my heart wasn't beating real fast and I wasn't in pain, when I laid down...just really tired. I was pretty calm, but in prayer. When, I got the nerve to get back up...my eyes got dark again and I went to my husband and told him that something was really wrong and to call 911. He immediately got up and tended to me. I just laid back down on the floor and he gave me a pillow and covered me up, but he didn't hear me say "call 911". I had drifted off and I don't know for how long, woke up and crawled up on the sofa. I felt fine when I woke up later. I don't understand. Does that sound like POTS to you?
    I just wanted to know if, your episodes are similar...or what you thought?
    I am really glad that we found one another Amber and I wish you well. The best. :) Maybe, we can help each other..in some way.."Lord Willing".
    God Bless you girl. ^_^

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  10. Wow what a great amount of information. I do not ,as yet, have Addisons but I think the underinformed doctors I have seen the last 4 decades may have some explaining to do. I am in stage 3d adrenal exhaustion. My Drs say Addisons won't happen to me but they never say why and I feel like a slug 80% of the time while im resting a lot, not sleeping much at all (the only sleep i get is courtesy of medical marijuana,Glad I live in Co),and my legs and butt are disappearing so now i no longer need to unzip when im in the bathroom. My belly is still very bloated,craving salt every few hours. I am thankful one decent Dr did get the AFS (adrenal fatigue syndrome) diagnosis. I am taking vitamin supplements to "heal my adrenals",don't feel any different yet but its only been 3 weeks. I may be headed to Addisons land. If any of you have any advice for me,I'm all ears. Amber, One thing I do know about regarding the generics,and sometimes the original meds is that MANY are binded together with.....wait for it...WHEAT. I was prescribed depression meds and the MANUFACTURER didn't seem to know if they contained wheat but did not deny it. I explained to her that I have celiacs disease and everytime I took the depression meds I would have a reaction. My guess since you also have issues with wheat that this could have been your contaminate as well. I do think EVERYONE has some type of issue with wheat since its been GMO'd so many times, each time the nations celiac diagnoses doubles..its not a coincidence. I encourage everyone to go gluten free for a year and decide if they feel better. It took me a year to not be depressed so it was very worth it. These days there are enough gluten free choices out there to make you initial switch quite smooth. I'm a foody and I only suffered about 1 week in my GF transition. It does help to go GF for any inflammatory issues. Sorry i strayed so far off topic. I do need any advice though reg Addisons as my symtoms are the same as many of your. I never vomit but have woke up pukey in the morning for decades. Any advice would really be helpful .

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    1. Sorry for just now responding to this. That's crazy that with a diagnosis of celiacs disease they would want you to swallow a pill containing wheat!

      I know I feel so much better eating gluten free. The rashes that no doctor could ever explain magically disappeared. I no longer looked pregnant after every meal. I went from barely being able to get in 3,000 steps a day to walking well over 10,000.

      Best advice would be monitor your AM cortisol levels through blood draws. An AM cortisol blood draw done between 7-9am can give you so much information. If it comes back low, the next step is a ACTH STIM test. These are basically the golden standards for how to diagnose.

      Best of luck on your journey!

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