More Oxygen by EPO - How in natural way?

IrisRV

Well-Known Member
@IrisRV Are you still on it? Fludrocortisone?
Yes. And at the moment both my cardiologist and my ME specialist think I'll probably be on it for life unless there's some big development in ME research that dramatically changes all the things that are screwed up in my body. My dosage might (and did) change as various things change in my health, but no one seems to think I'll go off it completely.
 

Who Me?

Well-Known Member
Yes. And at the moment both my cardiologist and my ME specialist think I'll probably be on it for life unless there's some big development in ME research that dramatically changes all the things that are screwed up in my body. My dosage might (and did) change as various things change in my health, but no one seems to think I'll go off it completely.
I'm hoping the immunologist I'm going to see, who was treating CFS 20 years ago, will know some ME savvy docs for me to see to figure out some of my issues. I don't get lightheaded when i stand, but I can't stand for more than a minute or so without getting wiped out. I never sit, always laying. I haven't had the energy to do a poor man's test.

They do scare me though. I was on them for a non-existent adrenal disease and developed allergies I never had. Then I got the virus that I never recovered from.
 

IrisRV

Well-Known Member
I don't get lightheaded when i stand, but I can't stand for more than a minute or so without getting wiped out. I never sit, always laying. I haven't had the energy to do a poor man's test.
That sounds a lot like I was. I never passed out or got very dizzy, but got wiped out for standing any length of time, including a clear decline in cognitive function.

They do scare me though. I was on them for a non-existent adrenal disease and developed allergies I never had. Then I got the virus that I never recovered from.
They aren't right for everyone. Were you on a lowish dose and still had problems? Was it fludro or some other corticosteroid?

It's quite possible that you need some other OI med so you won't have to worry about taking fludrocortisone. That might be the best thing to happen.
 

Who Me?

Well-Known Member
Your symptoms sound like me. It's on my list to investigate but I was not up to finding a doc who gets it. This is the year for me now that I am on original medicare and not an HMO.

Pre ME/CFS diagnosis, an endocrinologist diagnosed me with what I learned was a non-existent disease, Relative Adrenal Insufficiency. I was put on Cortef 5 mgs am 2.5 noon. I can't remember much from back then but I remember I felt horrible and he told me I would feel better in about a year.

Within months I had allergies I never had before. Was nauseated beyond belief. Then one day I got sick. My temp was 103º. I was hallucinating driving to his office. I never recovered. That was 95?

Fast forward to 2011. Same doc was arrested for snorting coke and banging his 24 year old office assistant in his car in the parking structure outside his office. lol
 

Merida

Well-Known Member
I was put on a trial of Cortef, but had no clear short term results - ie one month. Nuvigil does help short term - motivation, ability to be upright and get a few things done, helps with that 'weak' feeling, helps mood, can tell more jokes( without messing up the punch line). But can't take it every day, and the come down is horrible. Anyone else try this drug?
 

Who Me?

Well-Known Member
Nuvigil is not cortisone if I remember correctly. I believe @Strike me lucky has take Nuvigal and there may be a thread about that here.

I think general consensus is any stimulant should be for ocassional use as it gives a false sense of energy and you end up crashing
 

IrisRV

Well-Known Member
I think general consensus is any stimulant should be for ocassional use as it gives a false sense of energy and you end up crashing
That's what I've been told too. Stimulants make you feel like you have more energy, but you don't actually have more energy. So you overdo on stimulants and crash. My first ME specialist told me NO stimulants, not even coffee.

I seem to remember reading somewhere that fatigue from a purely neurological cause responds well to stimulants, but lack of energy (sometimes also called fatigue) is metabolic and stimulants can't improve that. They just ramp you up so you feel like you can do more. Push-crash

Since some of us could have both neurological and metabolic "fatigue", some of us could get benefits from stimulants to a certain degree. For others, stimulants could be really bad.
 

Remy

Administrator
Well, after spending some time checking pharmacies, it turns out that Epo is very expensive. Let me put on my surprised hat. It looks like my 30 day trial will likely cost just under $900. That's a lot to spend on something where the benefits seem so unclear as of yet. I'll have to do some more research and thinking.
 

Merida

Well-Known Member
That makes sense. The first thing would be to try the easy things in case the OI is mild enough that that will work. No point taking meds you don't need. My cardiologist did that, although it was quickly evident extra fluids and salt was a complete failure as a treatment. In a general purpose video, I guess you wouldn't want to give the impression that fludrocortisone is automatically used in all patients.

Fludrocortisone increased my BP, lowered my HR, and allowed me to be upright a lot more. I could do more without getting wonky or my HR and BP going wild. I could shower without having to go back to bed for the rest of the day, for example. I could climb a flight of stairs without having to lie down for an hour. I could sit upright many more hours a day. It helped with my cognitive function when I am upright. Not hugely, but noticeably. Overall, it improved my functionality.
@IrisRV
Why do you think we have such exhaustion with showering? Does anyone have thoughts???
 

IrisRV

Well-Known Member
@IrisRV
Why do you think we have such exhaustion with showering? Does anyone have thoughts???
My specialist suggested it was an orthostatic intolerance problem, probably due to low blood volume. A hot shower makes it even worse because it can dilate our blood vessels, making it even harder for our limited amount of blood to get too our brains. It seems many of us have low blood volume. IIRC, it because of aldosterone or vasopressin deficiencies, but don't trust me on that. :) Always best to check resources for yourself. It could also be due to blood pooling, which might be harder to deal with in a shower unless you want to wear compression garments in the shower.:yuck:

My cardiologist did a TTT on my daughter to diagnose OI, but didn't bother with me because he felt that since we both have ME and we had the same symptoms, I had low blood volume, too.

I'm prescribed fludrocortisone (to replace aldosterone) and verapamil, a calcium channel blocker (for tachycardia). For me, neither med alone made a big difference, but together they worked great. Fortunately I had a doctor smart enough to try them together after each one individually didn't help a lot. I might have given up on OI meds, otherwise.

Other meds that I don't take, but have heard work for other people are desmopression (for vasopressin deficiency) and midodrine (a vasoconstrictor). My daughter didn't like midodrine because you have to stay upright for quite a while after taking it, which is not great for a PWME who just needs to lie down sometimes.

A cardiologist (or better, an electrophysiologist, a special type of cardio) can usually diagnose OI. You might have a problem with a cardio who will only diagnose OI if you have an immediate response upon standing. That doesn't catch all forms of OI that are not of the classical POTS variety. You want one who knows enough to diagnose classic POTS, delayed POTS, hyper adrenergic POTS, NMH, and all the varieties of OI, since not all of us have the same form of OI. You'll probably have the best luck with a more recently trained cardiologist. The best situation would be to find a dysautonomia specialist, but they are few and far between unfortunately.

Once my body adjusted to the fludrocortisone and verapamil, and I was drinking lots of extra fluids and using an electrolyte mix, I could shower standing without trouble and could do much better upright generally. I could sit up more and walk around the house a lot more. Now I even walk around a large grocery store without problems.

If you can't get the meds, or your condition is fairly mild, there are management techniques that can help. They are good additions even if you're taking the meds. :) Your doctor may want to try these first in the hopes of avoiding meds. If they work perfectly for you, great, but don't hesitate to tell the doc they are not enough if you still have symptoms.

Management techniques:
  • Fluid loading -- we tend to dehydrate overnight. For some of us, the dehydration can be serious and we feel awful in the morning. To try to compensate, chug 500-750 mls of electrolyte water immediately before bed. If it just goes straight through you so you have to get up in the night, ask your doctor about fludrocortisone or vasopressin because your body might be taking too much water out of your blood and you can't get more in when you're asleep. Also chug 500-750 mls of electrolyte water before you get out of bed and move around. It's quite possible you still dehydrated too much overnight even with the bedtime fluids. Stay in bed half an hour after fluid loading to give the fluid time to get into your blood before you try to walk around and shower.
  • Drink lots of extra water during the day, 2-4 L depending on what works best for you. You don't want to drink too much, either. I was told ice water in large amounts is more effective than sipping all day, but I imagine either helps. When pushing fluids, you can wash out minerals and such, so make sure you put them back by drinking electrolyte water at some point during the day. For me, the doc says 1L out of every 3 should be a standard electrolyte mix. You can probably get good advice from your doc, or failing that, on the internet.
  • Don't stand quickly, transition slowly from lying down to standing, and try to be reclined rather than lying flat during the day if you can. As I understand it, those of us with blood pooling or vasodilation problems need more time than others for our bodies to adjust to upright. If you recline instead of lying flat, your body is better adjusted to a more vertical position so you can transition to sitting up or standing more easily.
  • If blood pooling is an issue for you, and it is for many of us, compression socks (or other garments) can help. A doctor can prescribe higher compression socks, but if you don't need that much compression, you can buy good compression socks online.
  • Use lukewarm water for your shower and sit in the shower instead of stand (shower stools are easy to come by). Do as little arms over the heart movement as possible. For example, hang your head down to shampoo instead of lifting your arms to your head. Ditto for toweling off after your shower. Sit and keep your arms low. Slow movements are probably better than fast, vigorous ones to keep your heart rate down.
FWIW, management techniques were nowhere good enough for me, so I need the meds in addition. Some people however, do fine with just management techniques.

Sorry that was so long. I hope I answered your question somewhere in there.
 

Merida

Well-Known Member
Good info is never too long! Thanks. Shower stool is next - but makes me feel so old. Yes, after shower my cheeks can be beet red and hot. You, too?

Yes, I drink a lot, and sip through the night. Lots of salty things, too. Have thought about this ADH hormone ( anti-diuretic hormone) from pituitary. Maybe there is a test for this hormone?
 

IrisRV

Well-Known Member
Have thought about this ADH hormone ( anti-diuretic hormone) from pituitary.
That's vasopressin. Desmopressin is the prescription replacement.
Maybe there is a test for this hormone?
There are tests for aldosterone and vasopression (ADH), put it seems many docs prefer to prescribe by a symptom/treatment/symptoms strategy. If you have the symptoms, they prescribe the med. If your symptoms get better, then they keep prescribing the med. I suspect this is a cost-saving measure. The meds are pretty safe and cheap so maybe it's cheaper and faster to just try the med than to run the tests. It may also be that the tests can be affected by some of the meds we take, that there can be lengthy prep (some docs want you to reduce your sodium intake by measurement for two weeks beforehand), the test can be long and mildly risky for people with low blood volume, or that the tests alone are insufficient to identify the illness anyway.
Good info is never too long! Thanks. Shower stool is next - but makes me feel so old. Yes, after shower my cheeks can be beet red and hot. You, too?
Yeah, it made me feel old, too, but it helped enough that I decided my ego wasn't as important as being able to shower more often. :p It felt really good when I tossed that shower stool in the trash last month after 4-5 years of use.

I was more likely to get pale, but I wasn't taking a really hot shower by the time I bothered to pay attention. My daughter used to get really red and hot when her HR would climb too high, apparently to try to compensate for not enough blood getting to her brain.
 

Strike me lucky

Well-Known Member
Good info is never too long! Thanks. Shower stool is next - but makes me feel so old. Yes, after shower my cheeks can be beet red and hot. You, too?

Yes, I drink a lot, and sip through the night. Lots of salty things, too. Have thought about this ADH hormone ( anti-diuretic hormone) from pituitary. Maybe there is a test for this hormone?

I was told adh test was inaccurate but needs other testing such as electrolytes and 24hr urine. I just started a thread on this subject if interested
 

Croatoan

Well-Known Member
Interesting...I know some ME/CFS practitioners use EPO. It certainly seems to make sense; low blood volume - low red blood cells - take EPO! I think Dr. Klimas and Ritchie Shoemaker do. I don't know many others do. I wonder why you don't hear about it much with regards to orthostatic intolerance???
Even more interesting is that it reduces oxidative stress, specifically reducing H2O2
http://www.sciencedirect.com/science/article/pii/S0006291X07011990
A stimulatory effect of EPO on HO-1 expression was demonstrated in cultured renal endothelial cells, in which EPO decreased intracellular oxidative stress and provided cytoprotection against H2O2.
 

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