@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.
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.
