Dyautonomia symptoms that follow regular daily pattern

[Sarah Tee]

G'day folks,

For the past 15 years, I've dysautonomia symptoms that come and go at the same time every single day. It starts soon after I wake up, runs for a certain time, then wears off. The next day, same again, seemingly independent of any other factor in my life – sleep quality, wake-up time, weather, stress, trauma, diet, activity levels previous day, etc. etc.

At first, it only lasted an hour or so, and didn't really bother me. (I actually thought it was morning dehydration related to some bowel surgery, so I wasn't worried at all.) But as the years passed, it gradually extended further and further into the day, until now it often doesn't wear off at all (or if it does I'm in bed asleep).

It seems to worsen about an hour or so after breakfast and lunch, but never after dinner.

The symptoms lift fairly quickly. I feel them start to abate, and within 30 minutes I feel normal.

Does anyone else experience a similar pattern?

Sarah

 

P.S. My symptoms are:

• drained, exhausted feeling
• pale in the face, drawn expression
• difficulty concentrating, especially on non-routine tasks
• bit of a headache
• can't face anything physically, mentally or emotionally demanding
• inability to stand still e.g. in a queue
• exercise intolerance
• lack of appetite
• feeling faint after showering
• can't squat down or lean forward/put head down

My blood sugar and endocrine tests so far show normal, and I don't have tachycardia or abnormal blood pressure. I don't have a history of fainting, although I often feel faint. Hot weather in summer and overheated offices in winter are unpleasant to me. It doesn't seem to be directly coupled with going from lying to sitting to standing.

I tried taking cortisol at a fairly low dose, and interestingly, my symptoms seemed to be gone. However, I experienced almost every unpleasant side effect known to man, and had to discontinue it after only a few days. My endocrinologist is not sure what this means for my symptoms, but as the side effects were so overwhelming, she also advised me never to take it again, so this was a dead end.

Snacks, water, salt, electrolyte drinks and resting have little or no effect. I simply have to wait for the symptoms to lift, then quickly try to get things done. So at 11pm you might see me washing the dishes, paying bills, lifting weights, replying to emails, knitting a lace shawl, and basically trying to fit in a day's woth of chores, recreation and exercise before I get sleepy and have to go to bed. I call it Jekyll and Hyde syndrome, because I feel like two different people.

[targs66]

hi Sarah,

Just wanted to let you know that you are not alone with this pattern! I am utterly useless in the morning and throughout most of the day, but (on good days) I have some productive time after 7 pm.  My low BP is a real problem for me, and it is especially bad when I first wake up. I wish I had some suggestions for you, but like you, I've tried just about everything so that I am functional during the day without much success.

 I have used hydrocortisone cream, which you can buy over the counter at the drug store, as it's much easier to administer in small doses rather than trying to break up tablets. I have used conversion/equivalent tables online (apologies, but I don't have a link handy) that will let you compare how much cream is equivalent to a tablet. I also have bad reactions to cortisol, but find that if I use a very small amount of the cream, it is tolerable. (To be honest, I am not 100% certain that it helps me that much, but you mentioned that it helped your symptoms, so I thought I would tell you about my experience.)

Best of luck.

[Pistol]

I would like to add to @targs66 post that hydrocortisone topical cream is usually used for skin problems and - if used for other reasons - the advice of a physician should be consulted. I personally have not ever heard of using the cream as described above, and am not sure if it would be helpful. Here is a link on how to use the cream correctly and what to look out for: Hydrocortisone topical Uses, Side Effects & Warnings - Drugs.com

9 hours ago, targs66 said:

You can find conversion/equivalent tables online (apologies, but I don't have a link handy) that will let you compare how much cream is equivalent to a tablet.

Again - please check with your physician before trying this!

[targs66]

Yes, you are absolutely correct, Pistol! (Apologies - I should have said check with your physician first!)

 

[Sarah Tee]

On 12/2/2020 at 12:06 PM, targs66 said:

hi Sarah,

Just wanted to let you know that you are not alone with this pattern! I am utterly useless in the morning and throughout most of the day, but (on good days) I have some productive time after 7 pm.  My low BP is a real problem for me, and it is especially bad when I first wake up. I wish I had some suggestions for you, but like you, I've tried just about everything so that I am functional during the day without much success.

 I have used hydrocortisone cream, which you can buy over the counter at the drug store, as it's much easier to administer in small doses rather than trying to break up tablets. I have used conversion/equivalent tables online (apologies, but I don't have a link handy) that will let you compare how much cream is equivalent to a tablet. I also have bad reactions to cortisol, but find that if I use a very small amount of the cream, it is tolerable. (To be honest, I am not 100% certain that it helps me that much, but you mentioned that it helped your symptoms, so I thought I would tell you about my experience.)

Best of luck.

Thanks for your reply. It is truly frustrating to wait around all day to feel better, isn't it.

My symptoms feel like they might be caused by low BP or low blood sugar, but everything shows normal.

That is interesting what you say about the cortisone cream. I would really like to find out why the cortisone got rid of my symptoms. I wonder whether it was something specific to my condition, or whether a dose of cortisone can make anyone feel better who is a bit achy and fatigued.

When I was taking the cortisone, I felt so odd that I neglected to take my BP, so I don't know if there was any change.

[targs66]

Yes, I know what you mean about feeling like your BP and/or blood sugar are low, even when they are normal! I know there is a lot of info out there about cortisone helping with so-called "adrenal fatigue," but I find there is too much conflicting info for anything to be reliable. I'm not even sure that adrenal fatigue is a widely-accepted condition.

 I hope you can find some answers!