New member, I have a simple question

[Teodor]

Hi there, I'm 36 yo and have vascular ehlers danlos syndrome. I have a question that is bothering me for many years: why most of my dysautonomia symptoms, including pots and the severe fatigue miraculously disappear at night time? Can anyone relate?

[CallieAndToby]

I don't know. Mine tend to get worse at night. 

Could it be hormonal? Or medications you take? 

[Delta]

Hi, @Teodor,

I do not have EDS, but this was certainly the case with me, and I think it's actually pretty common in people with POTS/dysautonomia. My symptoms were always worse in the morning and then, by evening, it often was almost as if there were nothing wrong. My understanding is that this happens because being "up and moving around" all day (basically exercise), to the extent that one is able, improves blood flow vs. laying in bed all night, and blood flow issues cause a lot of the symptoms. Once I was diagnosed and prescribed meds, my symptoms improved greatly (knock wood)!!

[Teodor]

Thank you both very much for the replies! Yes I suspect it's more of a hormonal problem, and I suspect I am in adrenal crash from a long time. My doctor prescribed me propranolol for the dysautonomia and remeron for sleep, but I am getting worse, pots is worse, remeron stopped working. If I do get to sleep I always wake up after a few hours not only unrefreshed, but also in fight or flight mode every day. I don't have sleep apnea so I am still wondering what triggers the stress response while I sleep. I am also 100% sure this exhausted my adrenals, because I have all the symptoms and I have really bad crashes during the day. This is going on for 17 years, plus I am in benzo withdrawal the last two years, never recovered.

Delta, can I ask what medications you're taking and what helps you for the blood flow?

[Delta]

6 hours ago, Teodor said:

Delta, can I ask what medications you're taking and what helps you for the blood flow?

I take 10 mg. of Propranolol, a non-selective beta blocker, once a day. My POTS doc, who is a neurologist, actually wanted to start me on 20 per day and I asked if I could start with 10 and move up if need be, and he was fine with that. I started with the 10 almost three years ago and so far, so good. I saw where you were taking that but it didn't seem to help you, but you'll find by reading the posts on here that the same beta blockers (and other meds) do not work for everyone, and some people have to try out different BBs or other meds before they find the right one/combination. I'm wondering if another BB might help you. Although I do have a question: What was your dose of propranolol? I ask because I've read that low doses of BBs are more effective at treating POTS/dys, whereas higher doses have been shown to be of little or no benefit. I'm wondering if you may have been prescribed a higher dose.

That's all I take as far as pharmaceuticals. I also drink more water than I used to, as it's important to stay well-hydrated to keep your blood volume up, and try to get enough salt in my diet.

What also helps me with blood flow is definitely exercise, even if it's just being up and walking. You don't have to be a gym rat or a runner! Just move about when you can. Also, I used to wake up with the worst brain fog so, with my doctor's approval, I sleep with the foot of my bed slightly elevated (we have an adjustable bed) to help blood flow to the brain, since when sleeping I'm in bed for hours and obviously not moving about. 

6 hours ago, Teodor said:

I don't have sleep apnea so I am still wondering what triggers the stress response while I sleep.

This happens to me from time to time - it happened more often before I was diagnosed and treated. I will wake up in the middle of the night feeling anxious, sweaty and heart racing, for no apparent reason! I can only assume it's the dysautonomia talking, because I felt just fine before going to bed! I'm sorry you have so much trouble getting some good sleep - I've discovered that not getting enough sleep can actually trigger flares for me, and I'm guessing it's not helping you.  

I hope you find relief from your symptoms soon - 17 years is a long time. 

[Teodor]

 

On 4/13/2021 at 4:55 PM, Delta said:

I'm wondering if another BB might help you. Although I do have a question: What was your dose of propranol

I was on 20mg propranolol (10mg morning, 10mg night) for two weeks. I wanted to try it because my old beta blocker doesn't do much. But instead of making things better the propranolol made my pots worse, so today I had to switch back again to my old beta blocker (Bisoprolol /Concor) 2.5 mg that I am on for two years. I'll call an endocrinologist tomorrow and make an appointment to check my blood hormonal levels, I hope they show something. I'll update my post with the results when they're done.

Thanks again for the info and support!

[yogini]

At night we don't drink fluids.   I think that has a lot to do with it.  It takes several hours after we wake up to make up for that.

[Delta]

23 hours ago, Teodor said:

I'll update my post with the results when they're done.

Best of luck with your endo - I hope you get some useful answers!!

 

18 hours ago, yogini said:

At night we don't drink fluids. 

This is a good point! I personally keep a tumbler of water bedside not only so I can sip during the night, but also because I take my med very early in the morning, before I get up for the day, so it will be "on board" when I do get up. 

[TorturedSoul]

@Teodorjust was curious. What symptoms led to that diagnosis. I am suspecting EDS for my children and I. Myself and my kids are very hypermobile.  We also have thin skin and you can see my veins everywhere. My son has velvety soft skin. My daughter blue sclera. She also has livedo reticularis. I had many scans over the years for my issues but no evidence is aneurysms or anything or that nature although they do not know why my d-dimer comes back elevated during my worst crashes. I also have tinnitus. Anyway my grandmother is extremely veiny and she's almost 86. She has a small aneurysm on her abdominal aorta and uterus drop but nothing else. My mother is very veiny as well and knock on wood no issues ( she did need blood transfusion with my birth but I'm a triplet and she had a c section so not sure if that matters). To be honest my dads mother was veiny as well and she's the one with the POTS symptoms. I don't know how much having translucent skin plays a part in diagnosis Bc my husbands mother and siblings are very veiny too. So not sure how Common that really is. It would be so unusual for my parents (both) and his to have this as it's considered rare. I was just curious what led to your diagnosis 

[CallieAndToby]

On 4/14/2021 at 4:17 PM, Teodor said:

 

I was on 20mg propranolol (10mg morning, 10mg night) for two weeks. I wanted to try it because my old beta blocker doesn't do much. But instead of making things better the propranolol made my pots worse, so today I had to switch back again to my old beta blocker (Bisoprolol /Concor) 2.5 mg that I am on for two years. I'll call an endocrinologist tomorrow and make an appointment to check my blood hormonal levels, I hope they show something. I'll update my post with the results when they're done.

Thanks again for the info and support!

My mother asked for my hormones to be checked back in January and they are all out of whack, some of them so high and out of range but nothing was really done about it until today, I had a telemedicine appt. and asked to be referred to a specific endocrinologist. I am wary of the doctor's in my city but he has outstanding reviews. I will keep y'all updated too. 

[Sarah Tee]

On 4/12/2021 at 10:04 AM, Teodor said:

Hi there, I'm 36 yo and have vascular ehlers danlos syndrome. I have a question that is bothering me for many years: why most of my dysautonomia symptoms, including pots and the severe fatigue miraculously disappear at night time? Can anyone relate?

Yes, I can relate. (I don't have EDS or POTS/heart rate problems.) My symptoms (fatigue, OI) used to only show up in the morning, and would disappear by morning tea. Then they extended further and further into the day, until now, 15 years later, I don't feel better until late evening. But many evenings I feel completely normal and you will find me doing chores, exercising, cooking and trying to have some kind of life between 11 pm and bed.

Obviously something in the body isn't right, but comes good later in the day. So far no answers.

I did see another person here who has abnormal cortisol if tests are done first thing in the morning, but normal if taken in the afternoon.

If you search this board you will find a subset of people do feel better in the evening (not everyone). So we are not alone in this 🙂

It's frustrating to think that maybe if tests and medical exams were done outside business hours, someone could find something that might be actionable, to use a horrid business word.

I had a vague idea of going on night shift – sleeping in the day and staying awake at night to see if the pattern would alter. But the sleep disruption would be risky in case you couldn't get back to normal afterwards.

[MomtoGiuliana]

Yes this seems to be quite a common experience among POTS patients to feel worse in the AM and better at night.  It's been my experience too.  When I am in a flare I cannot shower in the AM--I have to shower at night.  

I think some of it has to do with hydration status.  We tend to be a bit dehydrated in the AM and it takes some time to replenish fluids.  But I remember a doctor telling me is probably also has to do with diurnal changes in cortisol levels.

[JennKay]

@Delta -- I know this thread is from about a year ago, but do you take 10mg of the extend release propranolol or normal release? And, what time of day do you take it? I've tried metoprolol and atenolol without good results, but I definitely need a low dose beta blocker occasionally to dampen the adrenaline surges and to control my ectopic beats. I saw a new EP a couple of weeks ago and he gave me a prescription for propranolol and said to try 10mg before bed since I, like others, have almost nightly sleep disturbances. Am a little reluctant to try the propranolol and have been relying on 1/4 tablet of 25mg atenolol for as needed use, but even the 1/4 tablet lowers my BP too much. 

[Delta]

@JennKay, Hello! Sorry for this delayed response; I haven't been on here in a few days! I believe my Propranolol is normal release, because it's not a capsule, it's a small blue pill (Actually a scored 20 mg. pill that my doc wanted to start me on, but I asked if I could start with 10 and move up if needed, so I just get the 20s and break them in half). Every time I've read about propranolol extended release, it referred to capsules, and this is definitely not a capsule. I take it early in the morning, a couple of hours before I get up for the day. Usually I manage to wake up somewhere between 3:30 and 5:00 A.M., so I take my pill then - I keep a glass of water next to the bed - and then roll over and go back to sleep. By the time I get up, which is usually between 6 and 7 AM, the pill has been on board for a couple of hours already. Honestly, it started working for me almost immediately (KNOCK WOOD!!)