Robert J

It was difficult at first to describe this feeling to my doctor. I called it my non-anxiety anxiety. I wasn’t anxious about anything. I had a full blown episode in front of him during an appointment. When he saw what was happening, he linked it to my cortisol cycle. We have been using hydro cortisone 3 times a day - one at 3am because that’s when lots of things happen (the “hour of the wolf” the time of night most people pass). Despite the inconvenience, it’s worth the 3am medication to avoid that horrific feeling. These attacks, with me, can go on for hours often with me sitting rigid in a chair, uncontrolled trembling, sweating, feeling “frozen,” etc. The hydrocortisone seems to have mostly eliminated those episodes. Prior to seeing the episode, the doctor put me on a high dose of Xanax- but it nothing to relieve the feelings I was experiencing. Just something to consider should anti anxiety meds not work. Robert

This condition devastated my life. I was a teacher for 30 years when, in my last 5 years of teaching, I became sicker and sicker with doctors looking at me like I was a hypochondriac. I was sent for counseling, etc but I knew this wasn’t in my head. I finally found a doctor who recognized what I had and what I was going through. To manage symptoms and have some kind of life, self care takes about a third of my active hours including 4 days a week at an infusion center for hydration and multi vitamins. mentally, I had to adopt a new mindset and adjusted expectations. I went from an active life with many positive interactions each day to being isolated at home (I was socially distancing and on home restriction long before the pandemic - when things shut down I actually felt less lonely. So now I take life a day at a time. I treasure good days and I accommodate the bad ones. I was a planner but now I am more spontaneous. I must live life more mindfully and aware - a sort of Zen approach. The point is changing some assumptions and expectations of life can ease some of the mental stress. Finally, I learned a lesson about patience. You can improve and obtain more stability even though it is effort filled. Are there days I’ve just had enough? Sure. But that’s when I turn to forums and other supports to help me through it. Life has a way of working things out if you don’t despair and give up. Possibilities for romance will find you when you least expect it. If you’re designated as disabled by your doctor, look into jobs for disabled through your County government. There are often jobs for people with disabilities which will accommodate your health condition. i wish you all the best. robert

I have been struggling with digestive issues for a year and a half. Finally getting some control. One of the best things I have adopted is a grazing diet. This diet simply avoids large meals but instead substitutes eating small amounts throughout the day. Veggies and fruits high in water content are especially helpful because they also provide some hydration. Also, I discovered I have a food temperature sensitivity - if I drink or eat foods too hot or too cold It will trigger digestive problems. The key for me seems to be to avoid ANY over-stimulation of the digestive track. That keeps things running more smoothly generally. One last point is digestion requires lots and lots of blood and fluid. If you’re dried out you don’t have enough to carry out full digestion. I get IV hydration 3-4 times per week. This regular treatment has helped not only with GI issues but with many other symptoms as well. It took several years to work this out but it can be managed. Robert

Hi, P, thanks for the empathetic and comforting message! I’m sure you know when you have this disorder it’s a lonely place. Everyone has written me off as a nut who seems to have a new diagnosis every month and a new symptom de jure each morning. Just hard to predict or plan anything. It’s been tremendously impactful. My doctor is great and I’m sort of progressing along. Thankful to have this forum to share, learn, and listen.

In preparing for an appointment with my PCP I came to realize I have a triangle of triggers for my Dysautonomia: STRESS -FATIGUE - OVER-STIMULATION When I experience too much of any one of these things I can be bedridden but when all three create are in force it is, what I call a Trigger Triangle. The significance for me is it explains a pattern in my life of falling apart just when I’m on the verge of success. My doctoral degree - 3 tries but as the demands climbed, the stress increased, and that trips my senses into maximum overdrive... you get the picture. But I no longer look at myself as a loser who just bails when things get tough. Lots of self- forgiveness here. Anyone else have similar feelings?

I seem to have some sort of dystrophy that comes in in “bouts.” I have two distinct symptoms that can strike separately or together. The first is on overall neuromuscular weakness - not weakness such as I can’t do the neurological resistance test but it’s sooo difficult and just a little activity makes me tired and sore. The second is a kind is slow motion seizure where various muscle groups tense up. I can focus and use mindfulness to focus on a muscle group and get it to relax but no sooner do I get it to release, another muscle group tightened up. Sometimes it is difficult to describe what is happening and I need to observe symptoms so I can accurately report them. As with most weird symptoms, I inevitably find another patients account of something similar.

Although I’ve been sick for some time, my Dr just recently diagnosed me so I’m new at this. Do most people with COPS need IV fluids? I go to an infusion center where I sit next to patients in treatment for cancer, etc. at first I felt silly being here with my little bag of hydration- I’m not “really” sick. Yet, if I go more than 4-5 days without I end up in the ER getting pumped full of fluids.

In terms of fluids, I presently get 1 liter of standard sodium chloride IV 4 days a week run over 3 hours. My doctor added some potassium and many of my symptoms resolved however my problem is more with dehydration. Oral hydration just doesn’t work no matter how much I drink. Doc says it has something to do with vascular pressure and IV fluids help correct that. If I miss even a day I feel it. I also take fludrocortisone to try to help me hang onto some sodium which helps with fluid retention. So fluid sensitivity seems part and parcel of this disorder but the key for me was stabilizing the vascular pressure.