Running around like a headless chicken.

[bananabas]

Not sure this qualifies as a symptom really, but whenever I'm pressed to take some decision fast, or even small things like looking for my keys or shoes, I get into this state where my mind goes blank and I start pacing up and down the room until I get dizzy Does it sound familiar?

 

[whodathunkit]

Happens to me all the time. But you know things could be worse.

 

[bananabas]

Happens to me all the time. But you know things could be worse.

Haha, indeed. Well, no head, no problems I guess.

 

[SOC]

Not sure this qualifies as a symptom really, but whenever I'm pressed to take some decision fast, or even small things like looking for my keys or shoes, I get into this state where my mind goes blank and I start pacing up and down the room until I get dizzy Does it sound familiar?

Lots of people report inexplicable and annoying inability to make simple decisions. That seems to be a fairly common cognitive dysfunction with ME. There's been some discussion about it here at PR if you care to search for it. The pacing up and down part maybe not so much.

 

[bananabas]

Lots of people report inexplicable and annoying inability to make simple decisions. That seems to be a fairly common cognitive dysfunction with ME. There's been some discussion about it here at PR if you care to search for it. The pacing up and down part maybe not so much.

Well I think the pacing part for me is an attempt to activate my body which is trying to shut down when forced with any stressor, like having to act on something, find something, or decide something.

 

[whodathunkit]

Well I think the pacing part for me is an attempt to activate my body which is trying to shut down when forced with any stressor, like having to act on something, find something, or decide something.

If I'm home I sit down and kind of rock back and forth in semi-paralysis. I like to do this on the stairs for some reason. At work I just keep opening different windows and clicking different things on my computer.

If I'm at home, after a little while of the "rocking paralysis" I'll just give up and go sit in my recliner and turn on the TV.

At least, I used to. Since my biochemistry has been getting better and energy has been picking up the frequency of getting overwhelmed and going blank has been declining. Plus with new physical energy I realized I could afford to waste a little time in unproductive activities so I just started forcing myself to pick one of the options racing around in my head and do it. I'm not always successful at that but I find I'm spending more time doing things and less time on the stairs or in the recliner. That's pretty recent, though. Wasn't able to do that for a long time.

 

[anciendaze]

There is a simple relation between pacing up and down and orthostatic intolerance. As a teen, I was known for pacing while I talked. This started to be particularly noticeable when I reached my full height. I start pacing when I feel myself becoming light-headed, though it was many years before I made the connection.

Once you understand that the brain may be starved of oxygenated blood while you are upright, things begin to make more sense. Contraction of muscles in the legs helps to return blood to the heart, there are even natural check valves in the veins to assist this. Soldiers standing at attention are regularly reported to pass out. (Been there, done that.) This is because they are not getting the assist from muscles used in walking to return blood to the heart, leading to vasovagal/neurocardiogenic syncope or some equivalent term.

Many people with the problems you have reported are hypovolemic. It is especially important for them to maintain adequate hydration and electrolyte balance. If you are heat intolerant and sweating you should also supplement salt and potassium with something like Salt Stick capsules.

 

[bananabas]

Many people with the problems you have reported are hypovolemic. It is especially important for them to maintain adequate hydration and electrolyte balance.

Low effective blood volume, leading to otrhostatic intolerance seems to pop up quite often on my threads (see also Is this a crash?). It is possible that this could explain at least part of my symptoms. However all my attempts at getting better hydration usually fail as I excrete all liquids 15 mintutes later through urine.

 

[anciendaze]

Low effective blood volume, leading to otrhostatic intolerance seems to pop up quite often on my threads (see also Is this a crash?). It is possible that this could explain at least part of my symptoms. However all my attempts at getting better hydration usually fail as I excrete all liquids 15 mintutes later through urine.

This at least suggests problems with regulation of hormones on the HPA axis (hypothalamus, pituitary, adrenal). Polyuria is often associated with pituitary hypophysitis. This is commonly assumed to be a rare condition, but the problem is that past diagnosis required surgery to look for pituitary adenomas, and more recent diagnosis by MRI to detect hypophysitis is rarely done. In one series of scans of veterans with Gulf-War Syndrome eight out of ten showed pituitary hypophysitis. This is about equal to the total number of cases normally seen in the entire U.K. population in a year. This also suggested gender ratios were not as strongly biased toward females as clinical evidence reports. We simply don't know how common a number of these conditions are.

There are at least two strong suspicions of causes: autoimmune or autoinflammatory disease and actual leukocyte penetration of pituitary endothelial tissues. The pituitary is a highly vascularized organ with a lot of endothelial tissue in tiny capillaries, so endothelial dysfunction may be particularly damaging there. Again, there is a great deal we do not know. It is hard to investigate what is going on in the pituitary. (Just look at where it is.)

Another suggestion has been made that dysregulation of the HPA axis is an attempt to avoid intracranial hypertension, which has known serious consequences. This subject overlaps my recent interest in carbonic anhydraze inhibitors used for a variety of peculiar conditions.

You probably do not have any of the well-documented serious conditions described in the literature. There is a bias in the direction of progressive conditions with fatal outcomes, since these provide pathological specimens you can't usually get from living people. If you search literature for "intracranial hypertension", most of what turns up will be related to traumatic head injuries. Chronic conditions which are not rapidly fatal tend to be underrepresented in medical literature.

 

[Valentijn]

However all my attempts at getting better hydration usually fail as I excrete all liquids 15 mintutes later through urine.

There are electrolyte mixes which might help. Basically sodium, potassium, a small amount of sugar, and some other minerals. Typical sports drinks probably won't help.

 

[SOC]

Low effective blood volume, leading to otrhostatic intolerance seems to pop up quite often on my threads (see also Is this a crash?). It is possible that this could explain at least part of my symptoms. However all my attempts at getting better hydration usually fail as I excrete all liquids 15 mintutes later through urine.

The same was true for me. Extra fluids just went straight through. It is likely you need a medication such as Florinef or vasopressin. It sounds like it would be worth asking your doctor about that

 

[Violeta]

Do you think that food allergies can make this worse? I have been eating eggs again for three days and feeling terrible when standing, although I'm not sure that is what is causing it. Going for a walk is okay, but standing around and letting the dogs sniff makes me feel awful.

Eggs also have considerable choline, which does help with some neurotransmitter issues, but I don't understand it well enough to know if that could be detrimental.

At first I was thinking dopamine, because (I think I read) that it's necessary for the negative feedback for arginine vasopressin, but I should really look that up again to find out the exact mechanism.

But now I see that norepinephrine, which helps with OI, is made from dopamine.

"Norepinephrine is synthesized from dopamine by dopamine β-hydroxylase"

Here's what I had found about arginine vasopressin, antidiuretic hormone.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1199483/

As you can see, my brain isn't even working right, lol.

 

[Valentijn]

Do you think that food allergies can make this worse? I have been eating eggs again for three days and feeling terrible when standing, although I'm not sure that is what is causing it.

Egg whites contain avidin and can also bind biotin, which could cause problems if eaten excessively. But even in smaller amounts eggs might have a negative impact if you have certain mutations on the BTD gene for biotinidase, which recycles biotin. Some of those mutations are relatively common:
rs35034250 (T) P391S - 0.9% MAF
rs13078881 (C) D444H - 1.9% MAF (enzyme activity reduced to 48% when heterozygous)

The MAF for D444H was 8.7% in a sample of the 23 ME patients I had data for at the time, compared to 2.2% of their ethnically matched "controls".

The more cooked the egg white is, the less it can bind biotin.

 

[Violeta]

Oh, thanks, but just realized it's the sulfur. Between the eggs and the broccoli and cauliflower, and then some tea which for some reason makes my selenium deficiency worse! My temperature is down to 97.2, sabotaged myself again.