Does anyone feel normal as day goes on ???

[HCD77]

I am newly diagnosed with POTS and I can tell I feel so much better as the day goes on just like I am back to normal . After I take my meds and salt/fluids/ and put on my compression hose I feel so much better. Then in the morning I feel awful and it starts the pattern again. Does anyone else have a pattern like this ??? Sometimes I feel like I don’t even have any symptoms. I would be interested in your stories because I just don’t understand the huge difference. I am so thankful for my symptom free day. Then in the morning I feel awful until about 9:00 after I exercise. 

[Pistol]

@Lisa C - unfortunately this is normal for dysautonomia. Our ANS is very susceptible to any change and gets triggered to over react by he slightest thing - too much or too little exercise, what we eat ( or what we don't ), heat, cold, barometric pressure changes ( a big one for me ), allergies ( also a big one for me ) ... and your daily routine. I have found that when i found myself feeling bad at certain times of the day I would change my routine. For example: I always feel better in the mornings and get worse as the day goes on. Fighting this only makes things worse, so I changed my routine and -- Voila, I can make it through a day without major set backs. I go to bed really early ( 7 pm ) and wake up early ( 5 am ). The morning hours are my best, so I cherish them with a cup of coffe and doing internet chores. then I do my household chores ( one project a day ) and start to prepare dinner ( by cutting up things, defrosting things mixing things etc ) All thoughout I take 5-10 minute rests. Around 10 am i am done, go to bed to watch a movei etc. After lunch I make phone calls etc, Afternoon is time-out: every one in the house knows that i am out of commission. Nothing happens except for what's left to prepare dinner. Then bed. Most of the time I don;t have energy to even shower in the evenings, so that is another "chore" for my energetic mornings. ( BTW - my morning burst of energy comes from the Ritalin i take upon waking ). 

If you find certain times of the day you get worse it may be that you are doing too much. If you feel better after putting on hose and drinking a lot and then crash a while later you maybe did too much while feeling good? For me realizing that "feeling better"  does not equal "do more" has truly improved my quality of life. I had to learn that i can no longer do what i want when I want it - but I have to let my body dictate what happens when. The sooner I realized that the better things went. It sounds pityful but really is the only way I can peacefully live despite POTS. 

 

[p8d]

I think many of us have worse mornings because we are more dehydrated from not drinking overnight. I always am worse in the mornings. I have very labile BP but in general it’s lower in the morning. @Pistol is 100% correct, our ANS is extremely sensitive to just about everything. Even my neurologist said that to me the other day. I am extremely sensitive to fluid intake and stress. 16ounces of liquid can raise my BP 30 points for about an hour. One trick I was told to do is drink a glass of something before getting up in the morning and stay lying in bed for 15 minutes then get out of bed. 

[MomtoGiuliana]

Yes this is very typical.  I have had many days of feeling horrendous in the AM and quite normal in the evening, only to repeat that pattern the next day.  One dr told me it is due to diurnal variations in cortisol which affects fluid retention.  Many POTS patients arrange their schedules and lives so they are most active in the late afternoon and evening.

[Sushi]

Like others, mornings are the worst for me and I tend to stay up late because I feel better later in the day. 

9 hours ago, Pistol said:

barometric pressure changes ( a big one for me )

I feel much better when the barometric pressure is high. I am about to experiment with this by trying mild HBOT, a soft-chamber that can be used at home. It is pressured to 1.3 atmospheres. It can be used with out without supplemental oxygen from a concentrator. Has anyone else tried this?

[p8d]

16 hours ago, Sushi said:

@Sushi HBOT sounds interesting. Can you please post or PM me where you got it and cost? What do you expect it to help with? Any reason why high barometric pressure helps? I feel awful when it’s falling or low. Thanks.

[HCD77]

On 8/7/2020 at 6:30 AM, Pistol said:

 unfortunately this is normal for dysautonomia. Our ANS is very susceptible to any change and gets triggered to over react by he slightest thing - too much or too little exercise, what we eat ( or what we don't ), heat, cold, barometric pressure changes ( a big one for me ), allergies ( also a big one for me ) 

@Pistol this is so true for me too! I’m learning so much about the ANS dysfunction and how it affects me so much. 

[HCD77]

On 8/7/2020 at 7:26 AM, p8d said:

On 8/7/2020 at 7:26 AM, p8d said:

One trick I was told to do is drink a glass of something before getting up in the morning and stay lying in bed for 15 minutes then get out of bed. 

@p8d this has been so helpful for me. 

 

[Sushi]

On 8/8/2020 at 6:23 AM, p8d said:

@Sushi HBOT sounds interesting. Can you please post or PM me where you got it and cost? What do you expect it to help with? Any reason why high barometric pressure helps? I feel awful when it’s falling or low. Thanks.

Mild HBOT (soft chamber) will be an experiment for me. Others have found it helpful but there is no real data yet. I belong to a Facebook group where patients with different diagnoses discuss their experiences with it. It is thought to improve immune function, help with inflammation, migraines, etc. Since it is an experiment for me, a friend is lending me their unit to try so that I can discover if it helps before laying out a considerable amount of money. I do feel better at high barometric pressure so I'm hoping that this is a good indication. 

 

[Elegiamore]

After several decades of POTS, I do not remember what "normal" is at all.  

[Sarah Tee]

Yes, I often feel completely better by evening. I hate going to bed because the next day it all starts again.

[toomanyproblems]

FWIW I generally feel better in the mornings. 

WRT HBOT -- I did 80 sessions in a medical unit five years ago. It wasn't actually for POTS but I felt better in lots of ways. It did not correct the high HR on standing but I was not as symptomatic.