What a YEAR!!!

It has been a while since I have written a post. This has not been a very easy year for me, but I think I am finally on the other end. So, you might ask, what happened? Well, that is a loaded question! You all know that I deal with Ehlers Danlos Syndrome, and part of that umbrella is POTS (Postural Orthostatic Tachycardia). This is a condition I have had my whole life, but…..this last year (probably longer), I got hit with the wonderful visitor called menopause. This uninvited guest has made things so much harder. Please note that I am not giving medical advice, I am just sharing my own experiences. This post is for entertainment purposes only. Please seek advice from your doctor for any medical conditions.

Now I know every woman has some version of menopause, some breeze through it, some end up in jail for causing harm to innocent bystanders during the process. Me? Well, I didn’t even know that is what I was going through, but I knew I was going through something!! Let me explain. I have had a Mirena IUD for many, many years. This device is used to control another condition I have called adenomyosis. It is a very difficult, painful condition, but the IUD is a very good treatment. It also prevents pregnancy, which would be very dangerous for me after my last child. Chance of death would be very high. But, it stops your cycles completely, and because of this, I had no measure of where I was in the menopause process.

Near the beginning of this year, I started having severe emotional swings. I honestly felt like I was going crazy! OK, lets be real here, the emotional swings have been getting worse over the last 10 years or so, but the last 3 years, especially the last year was the worst. I was also having what seemed like panic attacks with extremely high heart rates, extremely high blood pressure, tremors and hot itchy skin. It didn’t take much to set me off either. This was a very difficult situation for me, and my partner. It felt like the world was ending some days.

During this time, I also felt my strength and muscle were decreasing. So after a bit, I visited my doctor. We did some testing and found a few things. My estrogen had pretty much disappeared, left the building, quit her job….I had nearly nothing! I have always had decently high estrogen, so this was a clear sign that the big M had hit. He quickly put me on estrogen via a troche, which dissolves between the cheek and gums. We also addressed all of my other hormone issues to get a good balance. It took some trial and error, but let me tell you, I felt so much better pretty quickly and found my emotions were much calmer, but not gone. And if I did have an emotional event, it was still causing medical manifestations. This has ALWAYS been a problem.

Something else was found. Something I have had my whole life, but had never had diagnosed. The POTS causes this condition of the nervous system called dysautonomia. My sympathetic nervous system is over reactive, and my autonomic nervous system fails to balance the sympathetic  (accelerator) and parasympathetic (brake) systems leading to a fight or flight overload. This little problem has been a real problem my whole life, and explains so much of how I feel when I get emotionally charged, or when a very stressful event happens. This part of my body regulates the things you can’t consciously control like blood pressure, heart rate, digestion and stress responses. I spent so much of my life having people and life events trigger this response in me never knowing that I was being put at real risk of medical catastrophe.

My particular subset is likely hyperadrenergic dysautonomia, which falls under the type caused by EDS related POTS. A mouthful, I know. It means I am more prone to the blood pressure spikes, large adrenaline dumps, emotional liability, tremor, GI shutdown, sweating, and prolonged recovery after an event. People with this sub type often perform well under structured stress (yeah powerlifting!), crash after uncontained stress (very unfortunately true) and are often misdiagnosed with anxiety. This can be dangerous because treatments for anxiety can actually be harmful with this condition.

Does this mean I can’t handle stress? Not necessarily, sometimes I handle stress quite well. The problem is how my nervous system interprets and resolves certain kinds of stress. It a normal body, stress activates the sympathetic (fight or flight) response, then shuts off cleanly once the threat passes. In dysautonomia, that off switch is waaaay slower and less precise. The system overshoots, lingers, and recovers unevenly. So what happens? The following responses happen, and are automatic. They are not chosen and are not controlled at all by mindset.

1. Sudden blood pressure spikes
2. Exaggerated adrenaline release
3. Emotional intensity that feels disproportionate
4. Digestive shutdown
5. Esophageal spasms (these feel like a heart attack)
6. Hot itchy skin
7. Skin Rashes
8. Tremors
9. Prolonged recovery after stress

Not all stress is processed the same way. Unpredictable, charged events, especially those involving loved ones, loss of control or a sudden threat release survival stress. In this state, adrenaline is released alongside cortisol, and this is the not so helpful combination for me. My digestion shuts down, blood vessels constrict, and the nervous system stays “on” long after the event has passed. Adrenaline and cortisol are a very bad combination for me. I simply cannot shut it off. It cannot be “reasoned” away. The rational part of the brain goes offline while the body prioritizes survival. This state will go on for anywhere from several days to as long as several weeks in extreme events. I have a rescue medication I have been afraid to use, but am quickly realizing that when this response puts my blood pressure at sustained levels as high as 180/122, that I will need to strongly consider using it. This blood pressure level is the stroke risk level. The medication is called Propanolol and it blocks the effects of the adrenaline surge.  Keep in mind I deal with a normally low blood pressure because of POTS, so the blood pressure shift during these events is extreme, and the danger from the use of this medication is real as I could go in the totally opposite direction and my blood pressure could drop too much. The jury is still out on how that medication affects me because I have not used it yet. It is a very low dose, but I have to proceed with caution.

OK, here is the paradox. Why does the adrenaline from competition affect me differently? Good question, and one that has a great answer! During a powerlifting meet, the adrenaline fuels me, it doesn’t try to kill me. Why is that? In that environment, I release adrenaline, dopamine and endorphins. This combination tells my body there is no fear, the brain improved focus and muscle contractions provide and “end point” for the hormones that were released. In these situations, my nervous system performs at high levels, probably higher than most, then shuts down cleanly afterwords, like a normal person. I will be tired for days, but will not have the emotional dis-regulation, digestive issues, or sustained high blood pressure that come with bad stress. Same adrenaline, different context, different helper hormones, means different outcome.

I train hard, I am strong and I am conditioned. Dysautonomia doesn’t mean I lack resilience or mental toughness. It is a nervous system that does not know how to let go of the fight of flight response. The last episode I had was tough. I tried something different, I went to the gym to deadlift. My mind and my body wanted to burst out the doors running, but there I made myself stand over the deadlift bar, with tremors and a racing heart, determined to give that pesky adrenaline something to do. All I could do was giggle, and almost cry, because I was fighting my own body and suppressing fight or flight chemistry (which is very difficult). And this condition on top of my other conditions, POTS and Ehlers Danlos Syndrome is just a disaster because it amplifies responses.  The deadlifting helped, or so it seemed. I felt better, so I jumped the gun and ate because I felt hungry. BAD IDEA! My digestive system had not yet come back on line, so my food came right back up and it triggered another, more severe adrenaline dump. It usually takes a minimum of 24 hours before I can eat after an episode. LESSON LEARNED…DON’T PUSH THE FOOD! And guess what has made it way worse? You got it…MENOPAUSE! Something that has been a problem is now on overdrive.

So what am I doing to help myself? Well, between my doctor, and ChatGPT (yes you heard that right, it’s been AMAZINGLY helpful), we have come up with things to do to help my body recover from an event. I’m speaking from me to me in this list:

1. Don’t push the food too quickly. Instead, drink salt in water, or electrolytes. After some time, try collagen in some water, broth or some essential amino acids. Eating WILL CAUSE another adrenaline dump!
2. Warm shower for vasodilation.
3. Dim lights to shut off stimulation.
4. Don’t have ANY deep conversations, or ANY conversations!
5. Don’t replay the stress event in your brain (hard to do under stress).
6. Lay down with feet on a chair and do some deep breathing to try to release sympathetic tone.
7. Drink ice water for esophageal spasms. Works like a charm to shut the signal off.
8. Try doing something like going to the gym to help metabolize the adrenaline, but keep reps low. Muscle contractions improve venous return, and it signals to the brain “threat handled”.
9. Just know that you are not crazy, your body is temporarily hijacked. There is no thinking your way out of this. Positive thinking and appreciation are not going to stop it once it happens. All you can do is support your body to aid in the recovery. The positive thinking can prevent it from happening in the first place though!
10. Try to take keep calm in your life. Less stress will possibly save your life!

I am not broken. My nervous system defect can be very helpful in an event that produces adrenaline and dopamine, like a powerlifting event. It is the combination of cortisol with the adrenaline where things go haywire. I am learning my body, from head to toe, because I am an athlete. I am an athlete with unimaginable genetic and medical roadblocks, so I must learn my body well to keep it performing at it’s best. I am not broken, I just need to adapt.

So to end this post, this is not all I had to deal with this year. Last March, I had a severe concussion with a very mild skull fracture. It was enough to send me into a month long dysautonomia event with elevated blood pressure. I also dropped an 80 pound weight on my foot in April, bruising all the bones in my foot and crushing the bone at the end of my big toe. I trained through all of this. The concussion was tough, the toe had it’s extremely painful moments. But I immediately went back to the gym after the ER when I broke my toe to work out…because adrenaline needed to be metabolized! I was able to do all my lifts barefoot, and wore a walking boot the rest of the time for about 4 months. It took about 8 months to heal (thanks EDS). I think my big toe is just a tad longer now. I also learned that I am completely missing a vertebrae in my waist area, which explains why lifting belts are hard to fit me, and also explains some problems with leverage and weight distribution I have in powerlifting. I am about 2 inches shorter than I should be….with long legs. So add this spine problem to the long list I already have. Fun times.

So I will be competing this month. I feel my strength is returning, and actually better, and my emotional stability is better with the treatments. I am learning to try to keep my life calm, because my life depends on it!  There are still people in my life who make a huge effort to be difficult and try to push my buttons. You’d think they would eventually give up and become a decent person….but no. I’m not even sure a change would be made if they knew they were putting my life at risk. So it’s my job to keep my life peaceful. It is my job to not react. It is my job to stay calm and power on!