Orthostatic Intolerance which isn't POTS

I just wondered if anybody had improved their Orthostatic Intolerance which isn't POTS. It is one of my biggest symtoms of ME and was one of my first symptoms at least 14 years ago. My cognitive functions are massively worse when sitting up or standing and feel very dizzy like theirs no blood in my brain. However my pulse dosen't increase much. It's 65 lying down and under 80 standing. My blood pressure does drop when standing but not much and it's not below range. I have have to lie down pretty much every hour and more often if I'm doing something where I have to concentrate like watching tv or listening to an audiobook.When I was lot younger I would get dizzy and lose cognitive funtion when standing or running but I would be ok if walking at a steady pace at least for a short amount of time.

I do take electrolytes(E-lyte which is really expensive but I find helps the most) and lots of salt which I constantly crave and which helps a bit. It also gets better when I eat a meal with or without added salt. I know it's get much worse if I'm even slightly sleep deprived. It seems to have a really strong correlations with my sleep which I don't understand. The other thing is I have to lie down on my front without a pillow otherwise I still feel like my brain is empty of blood.

Anway I just wondered if other people have these symptoms and if there is anything I could do about it?

I got sodium etc tested and they are pretty normal:
SODIUM 144 mmol/L (135 - 145)
POTASSIUM 4.0 mmol/L (3.5 - 5.1)
CHLORIDE *97 mmol/L (98 - 107)
BICARBONATE 22 mmol/l (22 - 29)

Did you do the diy pmttt (do it yourself poor man's tilt table test) ? The instructions are on this site.

I'd try that first. Also, Dr. Hain has info on possible causes if oi. It's on this site too. Tc .. X

You could be pissing out all your calcium. Try taking like 3 grams of calcium and see if that helps. You may have DI. You may have adrenal insufficiency. You may have sex hormone or growth hormone or thyroid deficiency. Only way to tell is to test.

I was not suggesting long term supplementation - just temporary to see if it provides any relief for serious vertigo.

All that sounjds just like my symptoms Aquila except for the lying on fromt biz
my specialist thinks i may have a "stretchy vein" type of EDS
so when i stand up i have insufficient blood to brain
this is a crisis situation so your body pumps out adrenaline in response with all the side effects that leads to including poor sleep
i take licorice root caps which help with the dizziness
floating in pooos or spa not to hot and warm baths help
as does aquaerobics -
these puch fluid back from your lymphatic system into the venous blood system so boost blood volume
avoid standing after exercise or after a large meal...less blood available for brain at these times
I am finding cratine quite helpfule for general ME symptoms
i treid Florinef and it did not helpa nd made me feel worse
I crave salt too and electrolyte drinks help

Thanks this is all really interesting I'm going to look it all up properly hopefully tomorrow because classicly I can't sit up well today. Just Briefly I don't think I have EDS as I don't have any of the other symptoms. I have quite high calcium already so I would be a bit worried abou takiking it. I will look up all the other suggestions and get back! Thankyou

Interesting Florinef didn't help you Allyson. I'm not well enough to leave the house unless I really need to so Aqua aerobics would be beyond me. I will look up licorice. Why does it help?

I seem to have DI when I over do it but not at other times? I don't know if that's possible my 24 hour urine was 5L which is pretty high. I had OI before DI however. I wonder about adrenal Insufficiency I recently had a morning corisol test which was normal/low ish but had a saliva test which was very low a while ago. My OI gets alot worse as the day goes one. Interesting both my dad and grandad have it to a much lesser extent. I have never tested sex hormones or growth hormones. I'm a guy so i don't know if that means sex hormones are less important. And I've took thyroxine and didn't improve on it after having a relatively high tsh.

I will look this up!

I stopped taking creatine once I associated it with some episodes of mild heatstroke. I'd thought that maybe was CFS related. Have you been in 90s temp and seen any evidence of heatstroke?

The first odd symptom I had was orthostatic hypotension. I immediately checked my blood pressure and discovered a sudden onset hypertension. The two can exist in the same person in the same period.

I found that I could be doing something like barbell deadlifts and have no problem, until I let go of the weight and stood up - then whoa almost getting close to fainting

Watch out for other BP issues also found in ME/CFS which may also cause orthostatic intollerance eg Narrowing of the Pulse pressure (thats when the systolic and dystolic readings come closer together then they should be). Also some may get a sudden drop in BP which may happen after being upright for quite a while.

Sounds like you have low blood volume causing the OI seeing salt seems to help you. Maybe you can find a doctor to trial you on Florinef for a short while to see if it helps or not.

Interesting.. I wonder what is causing that one as if you have low blood volume, one would expect if food affects, for it to rather make worst. I dont know but can hypoglycemia at all cause OI? It may be worth you trying to find that out in case it does, as that would explain something like food helping. You could have more then one issue causing the OI

yes the sudden onset hypertension could be due to the adrenaline release to counteract the BP drop.
After exercise you shouldlike down as you are vasodilated peripherally so less blood availabel for the brain
i like doing most my pump class on the bench - chest presses tricep cursl abs etc
then I stay for a yoga class or swim/sp afterwards fto cool down, stretch and so I am not out and walking while peripherally dilated/...... thus depriving my blood of brain and likely to induce a crash.

tania you c

am make your own electrolyte drings for next to nothing
hals a teaspoon each of salt and potassium powder in 500 kmls of water - that is all tbasicaly that is in the ones you buy anyway
I mix one up every morning and try to drink it down by 3pm ofr it interferes with your sleep due to hormone aldosterone changes after that time

Thanks Sherlock how did you make the definite connection between creatine and heatstroke?
It is winter here
i get hot and cold fluctuations any way and not noticed them anyworse since starting creatine
it is supposed to help in atp cycle so I don t see the connection
cheers
Ally

Sorry, Allison, I could have been more clear. By "sudden onset" I mean that my BP was good for a long time (I did check regularly), then after getting sick it was suddenly up by about 30/20 points. It stayed up all day every day, for many many months. I had also lost my ability to bring it down by vasodilation from exercise. After years, I am now usually normal BP again and have regained the ability to lower my BP through post exercise vasodilation (nitric oxide).

After the 2nd time I had mild heatstroke during exertion outdoors in the heat and sun, I noticed that I'd been using creatine both ties. I researched and saw that some do get heatstroke from creatine, purportedly because of how it changes how the body handles water.

So I never used it in summer again. But this spring I'd been reading about newly discovered benefits from creatine, including cognitive ones, so I bought some more and had no problems until 2 weeks ago when I had another mild heatstroke while doing some fast running on a hot sunny day.

Whether on creatine or not, my body temp is always low since getting sick, except that when I exercise I get overheated and it takes a very long time to cool down.

Electrolytes arenty helpful in assessing volume status in OI since usually status is low but electrolytes are normal.

Julian Stewart found some patients with abnormal orthostatic cerebral blood flow without major changes in heart rate or peripheral blood pressure (non diagnosable OI LOL)

The mechanisms of OI are becoming fairly clear in most patients.