Jump to content

Possible breakthrough


Recommended Posts

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.

Link to post
Share on other sites
  • Sarah Tee changed the title to Possible breakthrough

@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. 

Link to post
Share on other sites
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.

Link to post
Share on other sites
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.

Link to post
Share on other sites

@Sarah Tee 

5 hours ago, Sarah Tee said:

Does the fluid (or fluid plus salt) bolus work simply by raising blood volume, or is it more complicated than that?

Increasing fluids only works if also increasing the salt. The salt helps to keep the water in the blood vessels. The reason for hypovolemia in POTS is a bit muddled, since some people don't actually have low volume per se but their ANS ACTS as if they did. I know, it's complicated 😕! In my personal case ( I have HPOTS ) my  ANS reacts to triggers by constricting the vessels, resulting in tachycardia, high BP, cold hands and feet, chills, tremors, brain fog etc -  essentially all symptoms of going into shock. Drinking fluids and increasing salt has never helped me, I just pee it all right out ( increased urination is a symptom of fight-or-flight, hence we pee ourselves when scared ). But getting IV fluids, especially Lactated Ringer solution ( which has other minerals other than just sodium chloride ) helps to increase the volume in the blood vessels and keep it there, which as a result creates a steady pressure within the vessels and that stops the ANS from constricting them. This instantly brings down my BP and HR - which is weird, because in people with a normal ANS IV fluids would INCREASE the BP. 

As you see - POTS is complicated, which is the reason so many doctors don't get it. It goes against everything they were ever taught, and against how they have explained certain symptoms. 

Link to post
Share on other sites

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.

Link to post
Share on other sites

@Sarah Tee here is are two articles about hydration and drinking boluses - maybe they are interesting to you? 

Role & Importance of Hydration in POTS • MyHeart

POTS Treatment: Scientifically & Medically Proven • MyHeart

 

 

Link to post
Share on other sites
  • 3 weeks later...

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!

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...