Sarah Tee

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.

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.)

Just a minor update: I had a phone consultation with my endocrinologist yesterday. I told her about how the a.m. rapid salt and water intake had resolved my symptoms for a day. She agreed that this plus the fact that I felt better on hydrocortisone tablets points to low blood volume (or something in that area).

She talked about fludrocortisone (Florinef) as a possible treatment, but said that if I can improve my symptoms by salt loading or other adjustments to my salt and fluid intake that would be a gentler option. (She feared that the fludro would either be too strong a treatment or cause me nasty side effects as the HC did.)

She has referred me to Dr Chris O'Callaghan in Melbourne – 2.5 hour trip, urgh. I'm not sure how long I'll have to wait for an appointment.

On the plus side, the Australian government is making changes to expand telehealth options, so after an in-person consultation I can have follow-ups by phone or video.

A dental problem followed by a course of antibiotics has taken up all my "medical" time and made me feel pretty blah for the last month so I haven't been able to get back to experimenting with the salt loading yet.

Finished antibiotics (which worked) and am feeling better so hopefully can get back to concentrating on my dysautonomia now!

@sue1234, am I right in thinking that hydrocortisone could raise blood volume because of its mineralocorticoid properties?

I am wondering if this might be why it made me feel better. (I have reason to suspect from the effects of another intervention that my problems are related to low blood volume ... not confirmed yet ... waiting for post-holiday appointments!)

Update: It's a week since the day I first took the water and salt bolus and felt better. Unfortunately I haven't been able to replicate the effect.

(I can be pretty sure it's not a coincidence. My symptoms always recur at the same time every day, holding steady over 15 years, and there has only been one day that was different: the day I took the salt and water bolus.)

I am going to return to my normal diet and fluid intake for a week, then try again.

I have an appointment mid-Jan with my endocrinologist and will talk things over with her. She seems to know a bit about POTS and dysautonomia and is very helpful and thorough always (I originally started seeing her for NCAH).

Anyway, I will update this thread when I have something positive to add.

How does one tag a username?

@Pistol

Thank you for that information. I still have a ways to go!

On 12/21/2020 at 12:04 PM, Pistol said:

@Sarah Tee - many people on this forum do well doing a water bolus first thing in the morning. The next time you might try salty broth, it tastes good and is not as harsh on the stomach. I too feel good some days and then I do too much and the next week or longer I pay for it. It is important to pace yourself on good days, still follow a rest-and-exercise ( or chore ) routine even when feeling well. 

Broth sounds like a good option. I haven't managed to recapture the feeling I got on the first day. Unfortunately I have some other health problems that are unconnected to the dysautonomia symptoms, which muddied the waters. I did still feel better after dinner every night, and even did some weight lifting the one night, which was fun. (It's very basic, with small dumbbells, not Olympic style!)

I will have to try just fluid, and see if that works.

I wish I could clone myself so I could test a bunch of different doses and timings simultaneously, instead of waiting days between each!

Does the fluid (or fluid plus salt) bolus work simply by raising blood volume, or is it more complicated than that? I can't find much written about hypovolemia except in regard to severe cases.

On 12/21/2020 at 9:29 AM, POTSius said:

@Sarah Tee

That is great that this is helping

You should look into oral rehydration solutions, you can buy or make

They have water and salt but also sugar and other stuff to help it be even better absorbed, or something like that. Maybe it would help more?

Yes, I'll definitely give that a try. Should be easier to get an exact dose too.

So on Friday morning I was standing in the kitchen and my eye lit on a packet of salty snacks. I remembered reading that a "bolus" of water and salt is a possible treatment for dysautonomia symptoms, and I thought "Why not".

I ate snacks that contained about 400mg of salt and drank 500ml of water over a period of about five minutes.

(I have tried upoing my salt and fluid intake previously, but not with the bolus approach.)

Friday then turned out to be an amazing day – I felt better! I had energy and strength. I scrubbed two bathrooms, vacuumed the stairs, and pruned back the garden. Instead of flopping down into a chair after an activity, I stood in the kitchen and thought "What next?"

In hindsight, it may seem a bit sad that I "wasted" my healthy day on chores, but the gardening part was fun, and the bathrooms really needed cleaning, so I'm happy with that!

I repeated the experiment the next day, but I was a bit tired from all the previous day's activity (normal tiredness though, DOMS type, that anyone might have).

The third day, I also felt decent until about 4pm, did some cooking, more gardening, but then I began to flag. I decided to repeat the bolus, but this turned out to be a mistake. It didn't help, and it ended up making me feel that I had eaten too much salt (thirsty, slightly sore mouth), which hadn't happened with the single morning bolus. 

Today is the fourth day, and I am not going to do it today. I didn't sleep very well because I had to get up a few times for a drink. I will try again tomorrow or the next day.

This is the first time anything has helped, apart from when I took hydrocortisone but had to stop after two days because of the side effects. I am really glad that I have found something with the potential to work!

I checked my blood pressure and it was in the normal range (it usually is), so the salt didn't make it go up. All in all it seems promising, but I will be checking with a new doctor (GP) and hopefully a specialist now there is some clue as to what might be going on.

On 12/11/2020 at 8:00 AM, RecipeForDisaster said:

I’ve had it done. I did come up with unusual abnormal findings (HYCH, I think) , but I haven’t heard from the doctor yet, and it was a month ago. I don’t think Novak is taking new patients (I’ve been seeing him for years), and I did not have good luck with Systrom although his research is really neat. He wants to do an invasive cardiopulmonary exercise test on everyone.

Is Systrom a medication?

I hope you hear back soon. It is great that someone is doing fundamental research and gathering data.

On 12/11/2020 at 4:41 AM, MTRJ75 said:

From Australia or to Australia. I can't find where they're located. 

I did a search the other day and it seems there are more places that claim to specialize in Dysautonomia, but I think many of them are brain retraining programs. I forget the exact term I searched, but more places than I expected popped up. None of them anywhere near me though and none likely covered by insurance. 

It's in the USA, and I'm in Australia 🙂

The other specialist place I see mentioned is in the USA too:

https://www.vumc.org/adc/

Vanderbilt Autonomic Dysfunction Centre.

7 hours ago, sue1234 said:

Can I ask what dose of hydro. you were taking?

 

I think it was 10mg, 5mg, 5mg, distributed during the day. I took the medication back to the chemist for disposal so I don't have the bottle to refer to.

I then tried a single dose of 5mg, but still felt awful (from the side effects).

I think I will ask my GP to find out from the endocrinologist why it was prescribed. I cannot remember him giving me a rationale, but this happened in February, and I spent ages getting over the side effects, so my memory is a little vague.

Has anyone been here for testing?

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/#:~:text=Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS,OCHOS can be disabling.

It sounds very comprehensive. If I win Tattslotto I'll be on a plane from Australia!

1 hour ago, sue1234 said:

Fludrocortisone is a mineralocorticoid, which means it helps you hold onto salt, and thus it holds onto fluid.  It is used for low blood pressure.  Hydrocortisone is considered a glucocorticoid, which is replacing cortisol itself.  It has some mineralocorticoid properties as well.    It depends on what you need.  If your doctor has found you actually have low cortisol, he can replace it with hydro., but he needs to investigate why it is low.   If you only have low blood pressure, the fludro. would be the better choice.

 

Thanks, sue1234, that's very helpful. I actually don't know why I was prescribed hydrocortisone, because I was told that my cortisol levels were normal.

I am not seeing that endocrinologist any more. He was very unhelpful when I got the side effects, and in other ways. Luckily for me, the pandemic meant I was able to reconnect with my former endocrinologist in another city by telehealth. She is excellent.

However, we are none the wiser as to why the hydrocortisone resolved my fatigue symptoms. But she says that because the side effects were so unpleasant, I should not take it again. (Euphoria was the most alarming, because I was not thinking clearly at all. Thank goodness I do not drive because I really was out of it.)

Hopefully I will be seeing a neurologist soon.

I notice that fludrocortisone seems to be prescribed for some people with dysautonomia. What's the difference between it and hydrocortisone?

I was prescribed hydrocortisone, a fairly low dose, and it helped my symptoms but unfortunately I got a lot of side effects, including euphoria, and had to stop it after three days.

Is it possible someone could tolerate fludrocortisone better if they can't take HC?

On 12/2/2020 at 12:06 PM, targs66 said:

hi Sarah,

Just wanted to let you know that you are not alone with this pattern! I am utterly useless in the morning and throughout most of the day, but (on good days) I have some productive time after 7 pm.  My low BP is a real problem for me, and it is especially bad when I first wake up. I wish I had some suggestions for you, but like you, I've tried just about everything so that I am functional during the day without much success.

 I have used hydrocortisone cream, which you can buy over the counter at the drug store, as it's much easier to administer in small doses rather than trying to break up tablets. I have used conversion/equivalent tables online (apologies, but I don't have a link handy) that will let you compare how much cream is equivalent to a tablet. I also have bad reactions to cortisol, but find that if I use a very small amount of the cream, it is tolerable. (To be honest, I am not 100% certain that it helps me that much, but you mentioned that it helped your symptoms, so I thought I would tell you about my experience.)

Best of luck.

Thanks for your reply. It is truly frustrating to wait around all day to feel better, isn't it.

My symptoms feel like they might be caused by low BP or low blood sugar, but everything shows normal.

That is interesting what you say about the cortisone cream. I would really like to find out why the cortisone got rid of my symptoms. I wonder whether it was something specific to my condition, or whether a dose of cortisone can make anyone feel better who is a bit achy and fatigued.

When I was taking the cortisone, I felt so odd that I neglected to take my BP, so I don't know if there was any change.

G'day folks,

For the past 15 years, I've dysautonomia symptoms that come and go at the same time every single day. It starts soon after I wake up, runs for a certain time, then wears off. The next day, same again, seemingly independent of any other factor in my life – sleep quality, wake-up time, weather, stress, trauma, diet, activity levels previous day, etc. etc.

At first, it only lasted an hour or so, and didn't really bother me. (I actually thought it was morning dehydration related to some bowel surgery, so I wasn't worried at all.) But as the years passed, it gradually extended further and further into the day, until now it often doesn't wear off at all (or if it does I'm in bed asleep).

It seems to worsen about an hour or so after breakfast and lunch, but never after dinner.

The symptoms lift fairly quickly. I feel them start to abate, and within 30 minutes I feel normal.

Does anyone else experience a similar pattern?

Sarah

P.S. My symptoms are:

• drained, exhausted feeling
• pale in the face, drawn expression
• difficulty concentrating, especially on non-routine tasks
• bit of a headache
• can't face anything physically, mentally or emotionally demanding
• inability to stand still e.g. in a queue
• exercise intolerance
• lack of appetite
• feeling faint after showering
• can't squat down or lean forward/put head down

My blood sugar and endocrine tests so far show normal, and I don't have tachycardia or abnormal blood pressure. I don't have a history of fainting, although I often feel faint. Hot weather in summer and overheated offices in winter are unpleasant to me. It doesn't seem to be directly coupled with going from lying to sitting to standing.

I tried taking cortisol at a fairly low dose, and interestingly, my symptoms seemed to be gone. However, I experienced almost every unpleasant side effect known to man, and had to discontinue it after only a few days. My endocrinologist is not sure what this means for my symptoms, but as the side effects were so overwhelming, she also advised me never to take it again, so this was a dead end.

Snacks, water, salt, electrolyte drinks and resting have little or no effect. I simply have to wait for the symptoms to lift, then quickly try to get things done. So at 11pm you might see me washing the dishes, paying bills, lifting weights, replying to emails, knitting a lace shawl, and basically trying to fit in a day's woth of chores, recreation and exercise before I get sleepy and have to go to bed. I call it Jekyll and Hyde syndrome, because I feel like two different people.