Ehlers-DigestAnxiety Syndrome

Dear Reader,

I have paused the story of what happened at the 2018 Dwight Crum Pier-to-Pier Swim, even though you probably cannot stand the suspense, to tell you that later I did find relief for my Dumping Syndrome, because no doubt you suffering in suspense about that, too.

It got better NOT at the Cedars Gut Motility Clinic. I still have not been there.

It got better NOT from changing my diet, as I like to eat whatever I want.

It got better from treating my anxiety with Lexapro and naltrexone.

Now, every morning, I inject a syringe of ascorbic acid, take a shot of Lexapro, and a hit of my all-time favorite drug, coffee…

Along with 1/2 teaspoon of salt and 1/2 teaspoon of potassium in a large glass of water for my hydration problems.

This makes an excellent breakfast.

Why Lexapro?

In dysautonomia support groups, I had seen comments that Lexapro helped nervous system stability. I looked for studies. Seemed promising!

Any drug that works on the histamine system makes you stupid, give you brain fog and fatigue and makes your POTS worse, which is why I went with Lexapro because it does not. Many antidepressants do. Plus it has a cool sounding name. 

I also went with Lexapro because it comes in a liquid, so I could titrate (go up and down very slowly) as recommended for us contortionists. We are so very drug sensitive. I started at .5 gram, and still the side-effects were rough.

Warning: Do not discuss this drug in front of Alexa.

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“Hey Alexa…” saves me the hand strain of operating TV remotes, turning the dial on my thermostat, flipping light switches or having to type to ask the internet the weather or to play music.

I prefer Alexa because I could never have servants as I like to walk around the house naked, a habit acquired before we had cameras inside, which I realize now I must rethink. Hmmmm… disrobing and strolling through my house calms down my overwrought, overstimulated nervous system like nothing else. I will continue the practice. Rethinking done!

I take only 1 milligram of Lexapro, which everyone knows is not enough to affect a human. But if you are a very drug-sensitive human with super-rapid digestion, 1 gram is plenty. I really like Lexapro. On it, I can have an autonomic crisis without overwhelming feelings of anxiety, which is so much easier on me. Anxiety takes a lot out of you.

Naltrexone, huh?

This drug has been A-M-A-Z-I-N-G on my opiate-shattered, pain-battered, trauma-splattered brain.

I found Dr. Niles on the site LDN Science about Low Dose Naltrexone. What a find he turned out to be! Isn’t he cute? I never thought I could like anyone as much as Dr. Plance, but he is a real contender.

Dr. Niles doesn’t run out of the room screaming in terror from my rare disease, which I find confusing. Plus he is super-smart and super-nice. Why is that so hard to find.

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Sometimes Mr. Pennington and I have a joint appointment with Dr. Niles because we are extremely co-dependent.

 My body temperature is higher on naltrexone.

My body temperature is higher on naltrexone.

I have tried at every dose of naltrexone, from 0.2 mg on up! I like them all! Posts coming on why I started taking it and what happened.

I have NO auto-immune disease and my inflammation markers are LOW so I cannot comment on taking naltrexone for auto-immune disease. Those are different situations than my inherited, genetically programmed disasater.

Naltrexone stimulates the very complex internal opiate system and signals the body to heal, but only when endorphins are released. Mine get released frequently. I exercise tons. I also laugh until I cry about twice per week. Mr. Pennington is a man of few words, obsessed with tricking out our house with electronics, but he is extremely funny when he does speak. 

Mr. Pennington is also an excellent dancer. We get the party started and we shut it down. Too many leaps across the dance floor, and I had no choice but to crawl out of bed the morning after this wedding and put my foot straight in a bucket of ice water. I thought I had just strained my battered foot. Nope, new injury. Oops. At least I’d had a really good time.

 We gonna rock down to Electric Avenue.

We gonna rock down to Electric Avenue.

Naltrexone has been life-changing. 

You want to know my favorite dose? 50 mg at night, which a dose for PTSD. Knocks out that anxiety the next day!

W-O-W

R-E-L-I-E-F

Often, I start my day with another 5 mg. I just feel better.

Also, I may take tiny doses during the day:

  • before I exercise (increases endorphin response)

  • brain exhaustion

  • physical pain

  • acute stress/anxiety

  • anxiety crisis (25 mg if it is very, very bad)

It helps my tired brain get unstuck and move on.

Sometimes I feel a little worse at first, but that is because it is stimulating my brain to do something. Sometimes I start producing my own internal morphine immediately, which feels wonderful. Never know which will happen, but ultimately the result is feeling better.

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Full article here.

I will write more about my experiences with naltrexone later.

So what happened on race day? 

I promise to tell you next Thursday.

 Praying.

Praying.