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New To The Forum & Morning Symptoms


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Hello,

I am new to the DIN forum. I have suffered from dysautonomia for the past seven years following a "viral illness." In the past few years my symptoms have progressed to the point that I had to leave graduate school and am unable to work, drive, or function well enough to care for myself. I have read several discussions on the forum and have been amazed, thinking to myself "wow - I didn't realize that other people live this way too!"

One question that I would appreciate feedback on is whether or not anyone's symptoms have a "circadian" pattern to them. The degree to which I have symptoms upon awakening varies from day to day, but my symptoms rapidly escalate in the morning after eating breakfast and having a bowel movement. My most prominent and disabling symptoms involve wooziness and a sensation that I am moving or falling, hypoglycemia and rapid fluctuations in blood sugar, muscle spasms, pressure, and pain (especially in my neck, head, and face), and bursts of either physical "anxiety-like" symptoms (although I feel mentally completely calm) or feelings like I am drugged (i.e. "floaty" and out-of-it). In general, the intensity of my symptoms tends to decrease somewhat by the late afternoon and evening, with the exception being a large increase in symptoms from eating dinner. On most days, I feel the best in the late evening, around 9 to 11 o?clock at night. At this time, I feel the most ?normal? that I feel all day, and I am able to function the best. I hate going to sleep each night feeling the best that I do all day knowing that when I wake up in the morning my symptoms will begin again in full force.

Does anyone else notice this type of pattern to their symptoms? If so, have you found anyway to reduce them or function better during the mornings?

Thank you for your feedback. I look forward to being a member of the DIN forum.

~ Broken_Shell :)

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Hello and welcome.

Yes, the pattern you describe is familiar to me (and I think a lot of others). I have to wake up slowly and have been up and around for a while before I can tackle food. Basically, if you have a problem with low blood pressure, this is worse on a morning because your blood pressure is lowest at that time. Also, for many of us, eating brings on low BP (postprandial hypotension is the posh term) as blood is diverted to digestion. So eat something light on a morning. Maybe put your feet up for a while after eating.

Many of us are on medication to increase BP - you can search this forum to read about Florinef (fludrocortisone) and midodrine. For short acting drugs like midodrine, one option is to take them on waking and stay in bed until they start working.

Actually, there was a thread here recently about people's daily routine which may be an interesting read.

Hope you find the forum useful for some tips and reassurance.

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I remember that pattern well and lived in it for years off and on. I still get that way in a very bad crash, but lately I do notice as many morning lows and unfortunately none of the late evenings respites.

Getting the reactive hypoglycemia I think was an important factor in the shift for me.

I use to wake with low blood sugar (in the 60's and even lower on occasion) so I changed my diet dramatically to include a balance of protein, complex carb and fat at every meal. I also make sure I eat every 2-3 hours. It took a good six months on this modified routine to eliminate my morning blood sugar drops and with it seemed to eliminate the other morning symptoms as well.

And while my blood sugar now seems to be stable, my POTS is still through the roof and the resulting fatigue and pain last all day long with little fluctuation. However, who knows, maybe it takes time even after the blood sugar seems stable to get some relief from the rest of the POTS syndrome. One step at a time. And for me getting the blood sugar stable was the first step.

Good lucking finding something that works for you .... and welcome to DINET!

~EM

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Hello and welcome to our orthostatic extended family!

There are several mentions of a circadian pattern to dysautonomia. Often the dysautonomia will follow an altered circadian pattern with the worst symptoms in the morning. Dr. Raj at Vanderbilt has written about it several times. Since my circadian rhythm was screwed up to begin with, I know POTS did not cause the shift, but since I have the genetic POTS, who knows! How to deal with it? Do what you can when you feel like you are able. Don't plan anything too taxing in the mornings. Coffee helps with my fatigue, but too much is a BAD thing! Are you able to work on your own schedule? I did fine until I had kids, then school forced me to adopt a "normal" routine...it hurts badly! On a good note, since you developed post-viral dysautonomia you've got a very good shot at recovery! Good luck!

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Guest tearose

Just wanted to welcome you to the family.

I love dawn and early mornings. It is wonderful to meditate then...but my body doesn't always cooperate and is sluggish and challenged. It takes me about three to four hours to go from 70/50 rising bp to about 110/70 by 11am. Then I start to feel human.

As you discover others symptoms, you will see that your symptoms are not unusual.

I am sorry you have these challenges but do believe you will find great people and information here.

best regards,

tearose

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I once asked the head Neurologist this question when I was admitted and he didn't know the answer. Since then, I've learned a few things.

1. Try altering your schedule. This one came from my mom. I tried waking up at 3 am and going to bed at 6pm. I have to work 9-5, so this was an attempt to turn the AMs into PMs. It did work for me, but the world kept intruding after 6pm and I was losing too much sleep. Maybe it will work for you.

2. I kept my blinds shut and this keeps the sun out. This worked a little bit. If you get too hot when you wake up- you will likely feel worse. Mornings, I am nearly suicidal because of the sheer misery with nausea. This method went far with that. I make sure it is 65 degrees no matter the time of year.

3. I set the alarm 1.5 hours early, knock down the pills and sleep until they start working. Big improvement.

4. Recliner! This one came from my Angel MD, he said that most people transition from lying to standing in 3 seconds and it takes me until afternoon. I now sleep most nights in a recliner so that the transition will not be as dramatic. When the alarm goes off, I either head to the recliner and keep my feet down, or keep the feet in the slightly, but not fully, elevated position for the next hour and a half. By the time I get up, my body has been practicing being up for some time.

5. There was one suggestion to drink a full glass of water before getting out of bed. This nearly killed me (I think), it must be an individual thing. It made my nausea fly through the ceiling.

6. If there is any event, standing, going to the bathroom, etc that causes you to feel faint- return to bed or a chair for at least 15 minutes and then try again. This is important, because I believe that this sort of thing builds on itself and you need to reset your system before you have a dangerous event, such as falling.

7. Place your medications well. I take nausea meds and florinef both before I go to bed and when I get up. Sometimes this is only spaced out by 5 hours and I am on a really high dose of Florinef. I take it like clockwork anyway and I have played around with them to give them heavy coverage during the AM hours. Consult a pharmacist and then find out, within the recommendations, how your medications can work for you most effectively. Also, look at the side effects. I had one, Mestinon, that actually added more nausea than it was worth. Think critically with your MD about what the meds should be doing for you and what they may be providing you with that might be adding to your battle.

Good luck. These are the things that have worked for me. Everyone has their own combination and, like my MD says, it is not a science- but an art!

Kits

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Welcome,

When I was living w/o diagnosis and a full time mom,student and part time job I made my evenings my most productive time. I took evening classes, then would pay bills when I got home. That changed. Yet if there is one piece of advice its to go with the flow. I would take 20 min naps. (A skill-I no longer can).

Also I think havn't put this out before. Bowel movements can be unseteling for us. Its changing the fluid balance . No more details needed. Miriam

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