Lying Down

[jangle]

This isn't going to be a really insightful post, im just commenting philosophically on how cruel this syndrome is. I've went through quite a lot of pain today staying upright all day. Now im lying down and I feel fantastic, no dizziness. But the longer I lie down the worse I feel going back up again. That's what's so cruel about this syndrome, that which relieves it hurts us in the end.

I remember before I got this syndrome that I would get dizzy standing up from lying for a long time so I do think that response is normal to some extent, but just exaggerated in us. I have to wonder if one of the maintenance factors of pots is the fact that we have to lie down to sleep for a few hours everyday. Maybe I should invest in tipping the head of my bed up.

[diabeticgonewild]

Tilting the head of the bed up at 6 to 12 inches or 5 to 20 degrees is beneficial. Wedge pillows will not do the trick.

The form of dysautonomia I have is autoimmune, and thus has a different course than many people on this forum, but if I do not exercise for about five days, for any reason, life is bad.

I also cannot swim due to having a permacath (dialysis catheter) for plasmapheresis. I am grateful for the treatments, but they are all a form of torture to me.

Here are some countermaneuvers. (Look for the tables)

http://en.wikipedia.org/wiki/Wikipedia_talk:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy#Cardiovascular_Management

[HopeSprings]

I know. Lying down helps so much, but I'm sensitive to the whole deconditioning thing too, the little voice in my mind yelling at me --> get up, don't lie too long, you're gonna make things worse! Yet being up and around causes so much discomfort (to put it mildly). There is an afternoon crash though where there simply is no choice. It really is cruel and like being a prisoner to your own bodily dysfunction.

[Dizzysillyak]

Me, too. I hate that being supine is the only thing that helps me so much with my OI too. I have to say that knowing this is better than thinking everything that happened to me was from my CFS. This is at least treatable even if only for the time we're down.

It takes my body a solid hour to totally recover from hypoperfusion. Getting up sooner results in the same POTS HR I had before laying down.

I can't have my head elevated much because my brain is so blood deprived too. I'm experimenting with keeping the room dark and my eyes closed to see if it helps cut the time it takes to recover.

I don't experience pain when I'm upright tho. Have you had that looked at ? I only experience pain if I have an infection or my back is out for some reason. I get kidney stones on a regular basis but luckily pass most of them. These can cause local severe pain in certain areas but also generalized pain throughout my torso. Symptoms are typically just annoying. Only stuck stones cause a severe reaction. Oxalates nail me.

I get the afternoon crash too. I wonder if that's adrenaline related ? We use a lot of adrenaline being upright in the mornings.

[angelloz]

Jangle, I have let my brain wander through the same dilema. When I first came down with symptoms I could not sleep at all, I was up all hours of the night yet never felt tired during the day, hence the thoughts of pheo or hyperthyroid, ( not the case ). However at that time I didn't have many problems with standing..that all came later after I began sleeping more at night. Now, when I first wake up, ( if I don't get a middle of the night migraine ), I feel almost normal for a minute or two ..then it all begins. Standing in the morning is horrible, by evening it is usually much better. If I lie down in the afternoon because I have to...I too go through the dreaded..not too long or I'll struggle being upright again. I have tried drinking water through the night...elevating the bed....no change. Let us know if elevated the bed makes a difference for you.

[TCP]

Lying down is the only time most of my symptoms abate but I wake up feeling awful

[brethor9]

Lying flat on my back makes me feel worse....I feel like I am being strangled/constricted in the neck an my head pounds. I have been sleeping almost sitting up for the last year or so and find it makes a huge difference for when I wake in the mornings or during the night......unless my EDS is really acting up and then for whatever reason I can only sleep on my stomach with my head half off the bed...... my hubby said its like watching a Sloth sleep at times lol!

Bren

[julieph85]

Bren, same thing happens to me. My heart rate goes down when I lay but then I feel like my head is gonna pop. Terrible

[Lemons2lemonade]

I know, its like a constant uphill battle.

[Joann]

I try to never lie flat either. The few times I have for a test, my bp goes crazy high and have crazy surges for quite a while. I would love to try tilting the bed 6 to 8 inches, but unless you have your own bed how can you expect your partner to have to sleep like that too? Instead I use tons of pillows, and my daughters pillow pets to support me in a half sitting/half laying down position.

[blueskies]

I never lie flat either unless I find I've somehow managed to get into that position sometime during the night. I know that lying on the couch with my back against the back of the lounge and my head propped up by many pillows is the best way for me to sleep. I have weeks long periods when I don't go to bed but sleep on the lounge instead, sometimes. I just do better when I get up. But I sure miss my comfortable bed during these times. but maybe that's a good thing as I often fear my bed could become my whole world.

blue

[HopeSprings]

I can't lie flat on my back either without feeling like there is an elephant sitting on my chest, but lying on my side with three pillows under my head is good.

[futurehope]

This post in interesting. I take a nap every afternoon. My blood pressure drops too low for me during the nap. I know, because I take my blood pressure when I wake up. It may be 88/60 or whatever. I feel like a dead person.

So, for me, there is no "good" answer. I need the nap, but I can count on feeling dead upon awakening. Obviously, whatever method my body uses for regulating blood pressure, does not work too well. Yes, this problem is beyond words.

[sue1234]

Interesting. I cannot lie flat on my back either. It feels like I'm suffocating, also. What's up with so many of us not being able to lie flat?? It sounds like heart failure people, but we are not in heart failure. Now I'm curious! Any ideas?

[HopeSprings]

Me too with the napping, FutureHope - my BP drops and I feel horribly sick after I wake up, but just lying down (no nap) is helpful.

Sue - I have wondered the same thing about lying flat and I have no idea, but hopefully someone else can explain it!

[futurehope]

Ditto. I do not want to lie flat. When I've had to for one test or another, I hated it. I, too, feel like I cannot breathe. I hate lying flat at the dentist.

BTW, Jangle....I like the adjective you used to describe this condition...cruel. That's accurate.

ETA: Not only do I feel like death after sleep or a nap, I look extremely pale. Not a pretty sight.

[Joann]

For me the problem is getting up from lying flat. When I sit up I get tons of pressure and my blood pressure goes sky high.

[blueskies]

I don't know if my bp is high or normal (it used to be low but that has changed) after a day time nap but I do know that sleeping during the daytime makes me feel like death on waking up - a lot of the time. I can't work out why day should be different than night. I guess there could be a number of reasons.

blue