What is this horrible feeling??? Hypovolemia? Pooling?

[sunbun]

Recently, every day when I wake up I feel awful, like my insides are desiccated, like my veins and arteries have gone on strike, like my blood flow has stopped, or there is no oxygen in my blood or something, like my body is made of lead. I have to wriggle my limbs around and shake myself to feel alive and not feel like I am made of lead again. I have pretty high blood pressure but it feels like there is no blood moving around in my body. I have to drink half a gallon of water just to be able to get out of bed. I drink a litre of water every night before bed. If I stand too quickly I can actually physically feel the lack of blood flowing to my head and shoulders and neck, it goes numb for a bit and my abdomen feels so heavy with blood.

My hands go numb within 30 seconds if I raise them above my chest while holding my phone in bed, due to lack of blood flow. Once, I made the mistake of texting my friend for half an hour with my hands hovering above my chest, and had agonizing ischemia pains in my arms all night.

I have terrible blood pooling issues, my feet go bright purple within a minute of standing. At the same time I also feel flushed and hot constantly, as if all my blood has gone to my skin but none is actually flowing around inside. 

It feels like I have very severe hypovolemia, but my doctor ruled that out and said it was very mild, not enough to cause symptoms. I think it’s my blood pooling. My tachy is also way worse. I am getting desperate enough to go back on beta blockers despite the side effects I had last time. I am drinking caffeine to help with the pooling but it makes me feel awful in other ways too. Does anyone else experience this? How do you handle this horrible heavy feeling of all your blood sinking to the bottom like an hourglass? I must buy compression socks, that reminds me.

[MomtoGiuliana]

I know the feeling you are describing.  Salt and fluids and compression have helped.  A low dose beta blocker has helped.  What has helped the most is IV fluids when I am in a flare.  It is also best not to lie down too much for too long, I find.  Obviously you need to sleep.  But I do not let myself stay in bed longer than 7 hours when in a flare--bc I just end up feeling even worse.  I force myself to stay upright during the day--even if I can't do much more than sit up (unless I feel faint--I have never actually fainted--obviously you do not want to force yourself to stay upright if you may faint).  In flare ups I can feel very poorly and walking or much activity can be very difficult.

[sunbun]

1 hour ago, MomtoGiuliana said:

I know the feeling you are describing.  Salt and fluids and compression have helped.  A low dose beta blocker has helped.  What has helped the most is IV fluids when I am in a flare.  It is also best not to lie down too much for too long, I find.  Obviously you need to sleep.  But I do not let myself stay in bed longer than 7 hours when in a flare--bc I just end up feeling even worse.  I force myself to stay upright during the day--even if I can't do much more than sit up (unless I feel faint--I have never actually fainted--obviously you do not want to force yourself to stay upright if you may faint).  In flare ups I can feel very poorly and walking or much activity can be very difficult.

Thanks for your reply. Its just such a strange feeling. Its like I can actually feel all my blood pooling on whatever side gravity is pulling on. And you are right about sleeping too much; even though I am addicted to long sleeps, my blood literally feels like it’s all sunk to my back or whatever side I lay on if I lie around too long. I am dealing with a lot of splanchic pooling in my abdomen that gets way worse after eating a meal. Think compression hose and an abdominal binder might be the only way to go. Beta blockers make me feel awful but at least they get rid of that strange blood/fluid pooling feeling and my ankles were so much less swollen on them too. My calves and skin go all stiff and hard from the fluid build up. I am so deconditioned atm. My muscles have atrophied since I never exercise or use them anymore. Sigh. I really need to get my butt in gear.

[Pistol]

@sunbun - I agree with @MomtoGiuliana, in severe flares like that IV fluids always turned things around for me. I used to have a prescription from my specialist for 1 liter NSS over 2 hours as needed for tachycardia/ BP changes/ syncope. I would get them at an outpatient infusion clinic or urgent care center. If I did not get them in time my doc had to admit me to hospital for 14 hours IV fluids and all the symptoms would improve. If you have not already discussed this option with your doc I would strongly recommend it. Many dysautonomia patients benefit from this treatment to stop a flare, it is a known and accepted treatment for POTS. But he docs have to understadn that ot does not have to do with dehydration - rather with the fluids helping the ANS maintaining a balanced vascular system

 

[MikeO]

I can relate to your symptoms. On a bad day it feels like i am trying to pump molasses thru my veins. I will also get badly fatigued. Keeping up on fluids is one thing that does help me and my providers constantly are reminding me to do so. I do take metoprolol er succinate (is one of the few drugs i have had no issues with). Like @MomtoGiulianamentioned staying upright is important, I would add getting (staying active) and some kinda exercise during the week will go a long way. I would try the compression stockings (i can't use them b/c of my PVD) but in the past they did make my legs feel better.

[MTRJ75]

I understand 90% of that (though I'm probably going to have to google the word desiccated). You say caffeine helps with blood pooling though? Caffeine can be hit or miss symptomatically for me, but I'd never heard that before. 

What beta do you take? I've had the most success with small amount of Propanolol early in the day (10 mg), partially because my BP tends to run a bit high, but then also a small amount of Ivabradine (2.5-5 mg) in the evening w/o too many noticeable additional side effects. 

[Rexie]

Rosemary (Rosmarinus officinalis) essential oil, in studies and for me, has demonstrated anti-hypotensive effects (up to an increase of 20 mmHg). I like it because it helps improve my diastolic readings which often lag. I have used sprigs to make a stimulant tea (3-4” plant sprigs in boiling water; steeped 5 minutes), used the oil in dermal application to calves or other areas (feet, thighs, upper abdomen under the sternum), and tried it as an inhalant. Any of the three methods of using rosemary will increase blood pressure, heart rate (4-7 beats), and respiration rate for me (and for others in research studies), leaving me with a more active mood. It helps me get a deep, natural breath. Once in the morning on a really bad day will help me get going; more is counterproductive for me, leaving my muscles too tense and wired by day's end. 

Rosemary has been shown to decrease the power of alpha1 and alpha2 waves while increasing the power of beta waves in the anterior region of the brain. It is reported to improve cognition, memory, and mood; and has also shown remarkable anxiolytic (anti-anxiety) properties. Some of the flavonoids in rosemary cross the blood-brain barrier and increase the effect of the GABA neurotransmitter. 
Rosemary activates dopamine. Inhaled rosemary reduces stress and cortisol levels and is commonly used for mental strain and fatigue in folk medicine. 

Rosemary is also used in folk medicine as an antispasmodic, analgesic, antirheumatic, antiepileptic, and anti-inflammatory agent. Preliminary evidence suggests that rosemary oil may help reduce tissue inflammation that can lead to swelling, pain and stiffness, possibly by stemming the migration of white blood cells to injured tissues to release inflammatory chemicals. 
Rosemary essential oil exhibits both a psychostimulant effect and it enhances memory through activation of the DAergic system. 

Rosemary also been shown in studies to have anti-inflammatory and peripheral antinociceptive properties and complements oral pain meds (acetaminophen, codeine, tramadol, etc.). In studies rosemary has caused inhibition of pain due to its interaction with opioid and 5-hydroxytryptamine (5-HT1A) receptors. 

When used dermally (my favorite method – 100% just splashed on legs and rubbed in) with a dash of inhalation at time of application, rosemary gives me a groovy, tingly, and pleasant "up", imparting a sense of feeling mentally and physically refreshed with no side effects. After 20 minutes I feel significantly more attentive, alert, energetic and cheerful. It smells pleasant; the smell dissipates with absorption. 

Topical rosemary oil, as tested, has been helpful for circulation problems in many people. Studies have shown that it has a vasodilator and warming effect in people with systemic sclerosis and Raynaud's phenomenon. For me, rosemary does help relieve calve muscle cramps and stiffness and seems to jazz up circulation. 

Exercising calves is very good for increasing circulation and is easy to do anytime you're up - just stand on your toes a few times, a few times a day while using support.  

As a bonus, a dilution of 12.5% rosemary oil repels mosquitoes for 90 minutes or so. 

For that dried-out-internally feeling, I love slippery elm herb (400 mg at bedtime). Works wonders for me to relieve that dehydrated feeling with no down side at all.