Very Bad OI Episode

[taniaaust1]

It is a bit better now. I can sit up for 30-60 minutes before feeling super crappy now and my pulse pressure getting very low. The doctor ordered blood tests ... I think the white cell count and all that basic stuff, plus electrolytes and leukemia.

It's been a more extreme version of what happens when I crash from PEM, though this time without any of the other PEM issues and no activity to trigger it. No flu feeling, no digestion problems, no nausea. But the OI has been much worse, and with some symptoms I haven't had before. Sweating, panting after laying down, throat feeling tight/rigid, legs and arms feeling heavy and almost unusable, trembling legs.

But the crappy feeling followed by a few days of peeing like a race horse and worse OI happens with my PEM episodes too. So maybe something other than a crash triggered it this time, and caused it to hit me a lot harder.

Glad to hear you are feeling a little better. Unfortunately from what Ive found, ME changes over time.. you could of just entered like a new phase in the illness.
I can rarely get PEM nowdays as the OI triggers off things bad before I can even over do it with activity.

As far orthostatic narrowing of the pulse pressure goes.. Dr David Bell defines it as an issue (unless he's changed his views) as when the narrowing pulse pressure gets down to 18mm Hg or lower.

My BP monitor must be a bit better then yours as mine dont error out with the narrowing of pulse pressure till theres under 7mm Hg difference with the two. (its shows up my pulse pressure narrowing well till then)

What Ive found my BP monitor really hates (and all the other monitors Ive used seem to really dislike this too) and will easily error it out, is if I start getting arrthymia beats (dysregulated beating). The monitor then is trying to come up with heart rate for a one minute period.. dysregulated beats completely screw the monitors up and one keeps getting Error results.

Many monitors actually say in their manuals that they arent suitable for those with arrthymia. Consider it may be arrthymia rather then narrowing of pulse pressure screwing your monitor up. Arrthymia isnt all that uncommon with OI.

 

[taniaaust1]

I drank 2, 2.5, and 3 liters of water, on the 2nd, 3rd, and 4th days of whatever this episode was, respectively. I usually drink 1-1.5 liters, and was back to normal levels of thirst and urination on the afternoon of the 5th day and all of the 6th day (today) thus far. I also loaded up on electrolytes - salt, potassium, calcium, and magnesium - on the worst days, with a smaller amount on the better days.

The problem with "medical interventions" is that even getting properly investigated for (what seems to be) an obvious case of hypovolemia is like pulling teeth. I'll see if I can get my hands on licorice and/or other supplemental/herbal remedies while waiting for the medical profession to do something useful.

Ive had to drink up to 7 Litres (28 cups) in a day at times to try to hold off the OI as much as possible (unfortunately at the 6-7 Litre mark... I then start throwing up water, I dont recommend anyone drinking that much). I just want to point out that 1.5-2 litres a day is very little to be drinking if you have a low blood volume.

I think its great that you are trying to do all you while having that wait to get in with what probably is the right specialist. The things I'd suggest have already been suggested.. salt loading and lower limb strengthening things (a doctor may suggest you try that before he/she tries to treat you for the OI).

Other thing some OI specialising doctors sometimes tell people to try, is to sleep in bed with the head end of the bed raised up on a brick.

If you want to try medical support stockings which are useful for low blood volume issues.. I recommend making sure they are correct by going to a proper place and getting properly measured up for them (sometimes a doctors referal is needed for this).
They also then also teach how to correctly put them on, they are not put on like normal stockings. (medical insurance sometimes covers some of cost of these if a doctor has recommended them)

 

[ramakentesh]

How much you drink is in some way probably irrelavant. In POTS at least there appear to be problems with the bodies ability to retain blood volume through salt handling either because of abnormal levels of angiotensin II or due to dopamine effects on the kidneys.

That is why saline is often reported to work dramatically better than ingestion but POTs patients.

 

[taniaaust1]

How much you drink is in some way probably irrelavant. In POTS at least there appear to be problems with the bodies ability to retain blood volume through salt handling either because of abnormal levels of angiotensin II or due to dopamine effects on the kidneys.

That is why saline is often reported to work dramatically better than ingestion but POTs patients.

I thought that NMH has also been said to be caused in some by low blood volume??? Please someone correct me if Im wrong.

 

[Valentijn]

How much you drink is in some way probably irrelavant. In POTS at least there appear to be problems with the bodies ability to retain blood volume through salt handling either because of abnormal levels of angiotensin II or due to dopamine effects on the kidneys.

When this is happening, I need to pee immediately pretty much every time I drink. I'll also feel very thirsty, even though I just drank recently and my mouth isn't dry at all.

 

[xchocoholic]

It's possible that the need for frequent urination arises from our urinary tracts need to clear itself.
I'd try azo w probiotics to see if it helps. I usually have blood in my urine, but never figured out why.
I had some testing 20 years ago but didn't get an answer. Recently a cystoscope was offered but I chickened out .. With my history of kidney stones, I suspect oxalates are causing the blood.

fyi. Not everyone gets a uti from stones so tests can be normal.

I used to wear depends like garments until I discovered azo. Score ! Lol..

Hope you feel better soon.

Tc .. X

Ps. My reaction to h pylori and parasites was the worst I have felt since 2005, which is when I think I came down with celiac disease. I told my doc it was either celiac disease again or my oi had gotten worse. Lucky for me, she didn't listen to my self diagnosis and looked for real CAUSES. Integrative or functional doctors think this way. Traditional doctors don't ..

 

[SaraM]

Amy yasko's report :
ACE Deletion (Angiotensin Converting Enzyme) This enzymes leads to
high levels of angiotensin II which causes an increase in aldosterone. High
aldosterone leads to increase potassium loss in the urine and increased sodium
retention. Animal studies show a correlation between high angiotensin II with
increased anxiety and decreased learning and memory. Decreased potassium can
lead to fatigue and decreased energy production as cellular membrane activation,
particularly for the brain and peripheral nervous system is dependent upon
sodiumotassium balance. ACE deletion are more completed correlated to a
marker called AHCY enzyme.


I have high and out of range aldosterone, and have to pee immediately every time I drink, yet my blood potassium and sodium level is normal. I do not think I fit into the yasko's interpretation. I tried spironolactone for high aldosertone, but never paid much attention to its effect on the urination problem. My ADH level is also very low, so I recently ordered a amino acids panel to find out if amino acids deficiency is keeping my level low.

 

[taniaaust1]

Amy yasko's report :
ACE Deletion (Angiotensin Converting Enzyme) This enzymes leads to
high levels of angiotensin II which causes an increase in aldosterone. High
aldosterone leads to increase potassium loss in the urine and increased sodium
retention. Animal studies show a correlation between high angiotensin II with
increased anxiety and decreased learning and memory. Decreased potassium can
lead to fatigue and decreased energy production as cellular membrane activation,
particularly for the brain and peripheral nervous system is dependent upon
sodiumotassium balance. ACE deletion are more completed correlated to a
marker called AHCY enzyme.


I have high and out of range aldosterone, and have to pee immediately every time I drink, yet my blood potassium and sodium level is normal. I do not think I fit into the yasko's interpretation. I tried spironolactone for high aldosertone, but never paid much attention to its effect on the urination problem. My ADH level is also very low, so I recently ordered a amino acids panel to find out if amino acids deficiency is keeping my level low.

I feel like im going down a rabbit hole.. Im completely confused now. I know the most common drug treatment for POTS is florinef (fludrocortisone)...which affects aldosterone in a way it sounds like it boosts it.

According to wikipedia, "Fludrocortisone has been used in the treatment of cerebral salt wasting.[1] It is used primarily to replace the missing hormone aldosterone in various forms of adrenal insufficiency such as Addison's disease and the classic salt wasting (21-hydroxylase deficiency) form of congenital adrenal hyperplasia.

Fludrocortisone is the first line of treatment for orthostatic intolerance and Postural Tachycardia Syndrome as well." http://en.wikipedia.org/wiki/Fludrocortisone

My body just dont hold onto water well at times.. when it isnt, I will be peeing what I drink out in about 20 mins.

Valentjin.. are you still having the bad orthostatic issues you were?

 

[Valentijn]

Valentjin.. are you still having the bad orthostatic issues you were?

It's gotten better since that nasty episode a couple weeks ago, but still not back to where I was before that.

I finally got the rest of my test results a couple hours ago, and my norepinephrine is low (2.9 ng, range 4.0-6.0), which could certainly account for my OI problems. Epinephrine is on the high end of normal, so that's managing to compensate for it somewhat with vasoconstriction and increased heart rate.

 

[sunshine44]

It's gotten better since that nasty episode a couple weeks ago, but still not back to where I was before that.

I finally got the rest of my test results a couple hours ago, and my norepinephrine is low (2.9 ng, range 4.0-6.0), which could certainly account for my OI problems. Epinephrine is on the high end of normal, so that's managing to compensate for it somewhat with vasoconstriction and increased heart rate.

Did you ever figure out your severe POTS issues?

I am bedridden and have been struggling for sometime with these severe epsiodes especially in middle of he night due to low hormones I am sure and not much help from medical community and looking to see how people move beyond these severe episodes which I used to only have occasionally but they have been quite regular and its so upsetting as I am doing all I know of to do.