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Inconsistent results from salt/fluid loading


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The first time I tried salt/fluid loading, it had an amazing effect (symptoms completely gone all day). But I don't seem to be able to replicate it. Taking in the same amount at the same time hasn't worked again the same way.

I might get no change, a mild improvement, or a headache that seems like it could be due to overloading. Have tried different delivery methods, amounts and timings, but no luck in hitting the "sweet spot" again.

Meanwhile, the symptoms trudge on, regular as clockwork (starting in the morning, worsening in the afternoon, lifting somewhat in the evening, with an occasional total remission between 11pm and 1am).

Does anyone have any ideas why this might be? (I am waiting to see a specialist but that will be a while.)

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P.S. I realise it's possible it was a fluke that I felt better that day. But it was the only day in 15 years that my symptoms went away, and I wasn't expecting the salt/fluid loading to work. It was just one item halfway down a list of interventions that I was working through, none of which had helped that far.

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  • 4 weeks later...

Sarah, I have this response to treatments too. My response can last a day or for a few weeks. I’ve had it to diet changes, electrolyte solutions, medications, and activity. It’s very frustrating as it makes it impossible to know if something did help or you just tried it during an up swing. I hate not being able to reproduce results - especially when they’re good ones! I don’t know for sure, but expect it had to do with the wonkiness of the nervous system. It’s like rolling a ball versus rolling a football. The ball’s trajectory can be pretty easily estimated with some accuracy while the football just goes any which way. I’ve learned to just put things away and try them again later. I’m also always open to new ideas/products as i never know how I’m going to react. 

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@brainchild, thanks for responding. Your football analogy definitely makes sense. I am hoping that when I see the specialist in August there will be something measurable, although I am trying to prepare myself for the outcome that he will be just as much in the dark as I am.

If it was a straightforward case of low blood volume, it seems the salt and fluid would work every time, so there must be further wonkiness, as you say.

Oh well, fingers crossed!

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14 hours ago, Sarah Tee said:

@brainchild, thanks for responding. Your football analogy definitely makes sense. I am hoping that when I see the specialist in August there will be something measurable, although I am trying to prepare myself for the outcome that he will be just as much in the dark as I am.

If it was a straightforward case of low blood volume, it seems the salt and fluid would work every time, so there must be further wonkiness, as you say.

Oh well, fingers crossed!

Our condition waxes and wanes with so many factors so we have to keep adjusting.  With women, even things like the menstrual cycle can affect blood pressure, along with things like weather.  Have you tried keeping a record of your heart rate and blood pressure.  I found that really helpful when starting out.  

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@yogini, funnily enough, my symptoms are as regular as clockwork (unlike many people here). They never get worse with stress, exertion on previous day, other illness. Weird, I know!

I will try checking my blood pressure and heart rate when my symptoms are at their worst during the day and comparing it to when I feel better (late evening).

So far BP and HR have been in normal range and consistent with what seems normal for me, but I haven't compared symptomatic times with asymptomatic times.

I really wish it were possible to check blood volume as easily as blood pressure. (I suspect my problem is blood volume.)

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@RecipeForDisaster, do you find the IV fluids helpful, despite the inconvenience?

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8 hours ago, Sarah Tee said:

@RecipeForDisaster, do you find the IV fluids helpful, despite the inconvenience?

Oh yes, very much. I need 2L to make a big difference now, but it makes me feel like the old me. It’s crazy the little things we’ll discover later. For instance, my hands and feet were suddenly warm! That never happens no matter the temperature. I guess circulation helps!

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3 hours ago, RecipeForDisaster said:

Oh yes, very much. I need 2L to make a big difference now, but it makes me feel like the old me. It’s crazy the little things we’ll discover later. For instance, my hands and feet were suddenly warm! That never happens no matter the temperature. I guess circulation helps!

Oh, that is great that it helps. And warm hands and feet is a nice bonus!

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23 hours ago, Sarah Tee said:

@yogini, funnily enough, my symptoms are as regular as clockwork (unlike many people here). They never get worse with stress, exertion on previous day, other illness. Weird, I know!

I will try checking my blood pressure and heart rate when my symptoms are at their worst during the day and comparing it to when I feel better (late evening).

So far BP and HR have been in normal range and consistent with what seems normal for me, but I haven't compared symptomatic times with asymptomatic times.

I really wish it were possible to check blood volume as easily as blood pressure. (I suspect my problem is blood volume.)

If you have low blood volume then expanding through salt and water even when your blood pressure is normal should help.  But that's why it's important to monitor BP - because if you have too much salt and water it will creep up.  By the way, most people with dysautonomia don't actually have low blood volume but even then our symptoms mimic low BV.  The reason for this is that our blood vessels don't constrict properly in the upright position, so the blood pools in the lower part of our body instead of spreading evenly the way it does in healthy people. 

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@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

I can only hope that the dysautonomia specialist will refer me on, not just send me away.

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@Sarah Tee - there are different types of dysautonomia, and your symptoms are part of many of them. Cardiologists often are the first to see dysautonomia patients b/c of the high HR and associated fainting ( in some cases ). A TTT usually shines a light on it. Although my sister has all of the symptoms of HPOTS except for tachycardia - which normally excludes a diagnosis of POTS. She is still treated for POTS with a diagnosis of autonomic neuropathy. So - as you see, a experienced dysautonomia specialist should know what to do for you!

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8 hours ago, Sarah Tee said:

@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

I can only hope that the dysautonomia specialist will refer me on, not just send me away.

I hope so too. This is kind of where I am - so far I don’t fit anywhere, but my doctors are mostly helping me anyway. A hematologist is doing a lot of it! It doesn’t matter it’s not his specialty, he can see what I need. So don’t worry about this yet...

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10 hours ago, Sarah Tee said:

@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

I can only hope that the dysautonomia specialist will refer me on, not just send me away.

I feel for you.  It is a long. painful and scary journey.  I really hope the specialist is helpful.  But if not, keep in mind many of us went through several doctors.  Most of us eventually find treatment and improve.  Hang in there.  Let us know how your appointment goes. 

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On 2/19/2021 at 9:57 PM, Pistol said:

@Sarah Tee - there are different types of dysautonomia, and your symptoms are part of many of them. Cardiologists often are the first to see dysautonomia patients b/c of the high HR and associated fainting ( in some cases ). A TTT usually shines a light on it. Although my sister has all of the symptoms of HPOTS except for tachycardia - which normally excludes a diagnosis of POTS. She is still treated for POTS with a diagnosis of autonomic neuropathy. So - as you see, a experienced dysautonomia specialist should know what to do for you!

Thanks, @Pistol. There are positive comments about the specialist on this message board, so I am hopeful. I just have to somehow wait calmly until August. Having a small renovation done on house next week that should make life a bit more comfortable for me in the meantime.

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On 2/20/2021 at 1:31 AM, yogini said:

I feel for you.  It is a long. painful and scary journey.  I really hope the specialist is helpful.  But if not, keep in mind many of us went through several doctors.  Most of us eventually find treatment and improve.  Hang in there.  Let us know how your appointment goes. 

Thanks for the encouraging words. I will report back in August!

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On 2/19/2021 at 10:54 PM, RecipeForDisaster said:

I hope so too. This is kind of where I am - so far I don’t fit anywhere, but my doctors are mostly helping me anyway. A hematologist is doing a lot of it! It doesn’t matter it’s not his specialty, he can see what I need. So don’t worry about this yet...

That is great that you have someone "batting for you". I will try to be patient until August ...

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On 2/26/2021 at 7:55 AM, RecipeForDisaster said:

Well, he’s not totally helpful but he does try. He moved and his new medical assistant is not so great....

Oh dear. At least he tries, I guess. Staff changes can be difficult. My GP retired and I haven't managed to establish a rapport with any of the other doctors at the practice.

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  • 3 weeks later...
On 1/21/2021 at 9:13 PM, Sarah Tee said:

The first time I tried salt/fluid loading, it had an amazing effect (symptoms completely gone all day). But I don't seem to be able to replicate it. Taking in the same amount at the same time hasn't worked again the same way.

I might get no change, a mild improvement, or a headache that seems like it could be due to overloading. Have tried different delivery methods, amounts and timings, but no luck in hitting the "sweet spot" again.

Meanwhile, the symptoms trudge on, regular as clockwork (starting in the morning, worsening in the afternoon, lifting somewhat in the evening, with an occasional total remission between 11pm and 1am).

Does anyone have any ideas why this might be? (I am waiting to see a specialist but that will be a while.)

I have the exact same issue and same daily up and down symptom schedule as well. 
I've been diagnosed with dys for over a year now and have been tracking my sodium, potassium and fluids with no clear results. 

When I first started increasing my salt I had some times when I felt amazing and now I just feel crappy no matter what I do. 

So, no advice, but you're not alone. 

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@jinglebean, thanks for letting me know about your experience. How frustrating. It's like being in the too-hard basket of the too-hard basket!

There seems to be lots of good work being done to investigate dysautonomia and OI now, but I feel like it's all about 30 years behind other fields.

Something measurable must be occurring when we do respond to an intervention or medication, but no-one can measure it yet. It seems like blood volume could be important – if only it could be measured as easily as blood pressure.

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So, I have a small update: a while ago I saw a physician in the nearest large town. At that time I had not yet had the remission described above nor had I tried hydrocortisone.

I managed to get another referral to see this chap again. Don't know if he will be able to make anything of the new info, but I am hoping to persuade him to try me with a one-off of IV fluids just as a test.

P.S. I wasn't familiar with the role of physician until I was referred: https://www.imsanz.org.au/about-us/what-is-a-general-physician. You learn something new every day!

P.P.S. After reading about physicians, I feel like maybe they could be good allies for dysautonomia diagnosis, given that it can cross specialties. I may use this as a selling point to get him to keep me on as a "pet project".

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