Low blood volume in non-POTS orthostatic intolerance

[Sarah Tee]

Are there any studies or has anyone found personally (maybe through testing) that other types of OI come with low blood volume?

Dr Novak has said he suspects one group of OCHOS patients has low blood volume.

 

[Sushi]

I have low blood volume with Neurally Mediated Hypotension (non-POTS) and the low blood volume was verified with testing.

[RecipeForDisaster]

Dr. Novak is pretty sure about that for me, and I have HYCH. I went to that clinic yesterday and finally showed them my BP only could get up to 80/62 that day, despite the aggravation of driving in Boston, parking, etc! That is a record for a medical setting - much lower at home. The PA was impressed - she told me to let her know if I had vision changes, and I casually told her I had no vision. I never do when I stand.

[MikeO]

1 hour ago, RecipeForDisaster said:

my BP only could get up to 80/62 that day

This number would really bother my orthostatics. Give you a lot of credit being able to deal with the blood pressures.

[Sarah Tee]

@Sushi, @RecipeForDisaster, that is interesting to hear.

I couldn’t seem to find any studies or even case studies mentioning chronic low blood volume except in POTS (and in some older ME/CFS studies). We need more studies and testing to guide treatment.

I am on tenterhooks waiting for someone in the US to get ahold of one of the new measurement gadgets (Detalo Health). People have used the science version in studies in the US, but buying a medical one means going through some red tape.

The folks who manufacture it are bound by very strict guidelines in Norway. As I understand it, they cannot initiate contact with doctors or medical organisations. They can only respond if someone contacts them. So I keep trying to mention it everywhere in the hope an autonomic specialist will get to hear about it.

 

@RecipeForDisaster, that is low. I wish they could find something to help you.

[RecipeForDisaster]

4 hours ago, MikeO said:

This number would really bother my orthostatics. Give you a lot of credit being able to deal with the blood pressures.

I am often in the low 70s at home. Sometimes people want to blow that off as "my normal", but I honestly feel like I am 99% dead, and I don’t function well. I have all the signs of shock - I am not tolerating it well. I just force myself to get up each day, and exercise when I have supervision. 

[RecipeForDisaster]

2 hours ago, Sarah Tee said:

@Sushi, @RecipeForDisaster, that is interesting to hear.

I couldn’t seem to find any studies or even case studies mentioning chronic low blood volume except in POTS (and in some older ME/CFS studies). We need more studies and testing to guide treatment.

I am on tenterhooks waiting for someone in the US to get ahold of one of the new measurement gadgets (Detalo Health). People have used the science version in studies in the US, but buying a medical one means going through some red tape.

The folks who manufacture it are bound by very strict guidelines in Norway. As I understand it, they cannot initiate contact with doctors or medical organisations. They can only respond if someone contacts them. So I keep trying to mention it everywhere in the hope an autonomic specialist will get to hear about it.

 

@RecipeForDisaster, that is low. I wish they could find something to help you.

I STILL yearn to get my low blood volume documented. I think it’s clear from the way I have improvement in nearly every problem I have when I've received IV fluids. So, the thing everyone is starting to lean towards is chronic IV fluids, which is problematic in so many ways. I am somewhat relieved that they are not trying to tell me just to keep living this way (it keeps getting worse), but there are so many risks involved with my getting a port. Plus, ugh, cold and heavy fluids to drag around for a third of my life… some doctors tell me I’ll come around and end up doing it, but I don’t think so. I’m very grateful I have the fluids when I need them, and that I know there’s at least one treatment that will get me off the floor. By the way, we still don’t know what my BP is when I actually pass out - obviously it’s lower than 70 if I can still walk around and think at that level!

[MikeO]

2 minutes ago, RecipeForDisaster said:

I am often in the low 70s at home. Sometimes people want to blow that off as "my normal", but I honestly feel like I am 99% dead, and I don’t function well. I have all the signs of shock - I am not tolerating it well. I just force myself to get up each day, and exercise when I have supervision. 

Wish there was more you could do.

[Sarah Tee]

@RecipeForDisaster, I understand your reluctance about getting a port. And also about making your “emergency” treatment your “everyday” treatment. In some ways I was relieved when infusions didn’t work for me because then I would have had to face these decisions.

 

I have been reading a bit about antibody research aimed at Long COVID. It’s still too early for anyone to say, but I’m hoping that some treatments will succeed in trials and will then filter through to dysautonomia patients generally.

Dr David Kem was in the middle of some promising research work when he sadly passed away. If I read correctly, he had promising ideas on a drug that would “glom onto” bad antibodies and render them inactive.

There seems to be some research in Germany proceeding along somewhat similar lines (glomming onto bad antibodies), although doing it in a different way and for different antibodies.

[Sarah Tee]

Video of new way to get blood volume checked (shows small blood samples being taken):

https://detalo-health.com/demonstrating-blood-volume-measurement/

Just in case everyone is not sick of me blabbing on about it … 

[RecipeForDisaster]

6 hours ago, Sarah Tee said:

@RecipeForDisaster, I understand your reluctance about getting a port. And also about making your “emergency” treatment your “everyday” treatment. In some ways I was relieved when infusions didn’t work for me because then I would have had to face these decisions.

 

I have been reading a bit about antibody research aimed at Long COVID. It’s still too early to say, but I’m hoping that some treatments will succeed in trials and will then filter through to dysautonomia patients generally.

Dr David Kem was in the middle of some promising research work when he sadly passed away. If I read correctly, he had promising ideas on a drug that would “glom onto” bad antibodies and render them inactive.

There seems to be some research in Germany proceeding along somewhat similar lines (glomming onto bad antibodies), although doing it in a different way and for different antibodies.

Yes, I can imagine! It’s really a double edged sword. It’s so helpful but so miserable (and expensive) to do. I also keep most of this illness hidden from as many as I can, and having an IV running for many hours is tough to hide. 
 

I think you are correct that long COVID will eventually benefit the rest of us. There is still hope that IVIG will help me - I have to do another year or so before we know if it helps more than SFN for me.

 

I never tire of reading about blood volume measurement! I would do anything safe to find that answer. 

[Sushi]

1 hour ago, RecipeForDisaster said:

I never tire of reading about blood volume measurement!

It can also be diagnosed during a heart cath by a clever interventional cardiologist--that is if you are getting a heart cath anyway for other reasons.

[Sushi]

1 hour ago, RecipeForDisaster said:

I would do anything safe to find that answer. 

Have you ever tried strategies to boost the sympathetic nervous system--sorry I don't know your history. Strattera helped me enormously by increasing norepinephrine in the synapses. Only a small percentage benefits from this but they are often overlooked. 

[RecipeForDisaster]

9 hours ago, Sushi said:

Have you ever tried strategies to boost the sympathetic nervous system--sorry I don't know your history. Strattera helped me enormously by increasing norepinephrine in the synapses. Only a small percentage benefits from this but they are often overlooked. 

Adderall helps me a lot at tiny doses. It’s not covered by insurance. I haven’t tried Strattera, but I bet it would. I use vagal stimulation from a homemade modified TENS. I bet there’s more I do for this, but I can’t think of it.

[Pistol]

11 hours ago, RecipeForDisaster said:

It’s so helpful but so miserable (and expensive) to do. I also keep most of this illness hidden from as many as I can, and having an IV running for many hours is tough to hide.

@RecipeForDisaster I have had a port for many years and have improved greatly with weekly or more infusions. I run them at night so I do not have to be "on the pole" during the day. Being able to use the fluids as prevention rather than as an emergency treatment has - in my case - proven to provide some stability and control over my symptoms. Plus I rarely ever pass out anymore - I used to do this several times a week. 

[Sarah Tee]

@RecipeForDisaster, I really hope the IVIg helps.

[RecipeForDisaster]

6 hours ago, Pistol said:

@RecipeForDisaster I have had a port for many years and have improved greatly with weekly or more infusions. I run them at night so I do not have to be "on the pole" during the day. Being able to use the fluids as prevention rather than as an emergency treatment has - in my case - proven to provide some stability and control over my symptoms. Plus I rarely ever pass out anymore - I used to do this several times a week. 

I know I’d feel vastly better if I did it a few times a week. It’s mostly my clotting disorders that make some of the doctors and I pause. I haven’t had a pump until this coming week(supposedly one is coming), so I had to stay awake to ensure it was running and not out of fluid. That stunk for many years. I have never passed out within a week of getting fluids, nor the day I have taken Adderall.

[RecipeForDisaster]

3 hours ago, Sarah Tee said:

@RecipeForDisaster, I really hope the IVIg helps.

Thanks! I go through periods of being somewhat okay with my suffering and level of functioning, and then I get worse and am not okay with it anymore. Plus, I hate doing IVIG - I already dread it and it’s in 2 weeks.

[Sarah Tee]

@RecipeForDisaster, ugh, that’s no good. Is it side effects or the general stress of it all?

I hope you can arrange some little comforts or distractions to make it more bearable.

[RecipeForDisaster]

1 hour ago, Sarah Tee said:

@RecipeForDisaster, ugh, that’s no good. Is it side effects or the general stress of it all?

I hope you can arrange some little comforts or distractions to make it more bearable.

It makes me sick, both with infusion reactions and often a little aseptic meningitis- plus it’s a nurse with me for 7 hours a day, twice in 3 days, which is a bear in itself. I work during the infusions, so at least I’m distracted.