New Book about Thirst in ME/CFS

[ruben]

Sorry, but I've not read much on this thread, except to say that having an abnormal thirst is one of my least troublesome symptoms.

 

[crussher]

I was also in the hospital for hyponatremia recently but mine had to do with my teeth causing me to be unable to keep food and my diy electrolytes down for two days.

I'd been in the ER before though for the same thing two other times.

This time, I figured since the situation was worsening and I'd had this before that I needed to go to the ER fast. By the time I got there it was down to 120. I was thinking they would just give me saline IV for a couple hours and send me home but they said when it's that low they can't go quickly or it can cause problems with the brain somehow.

Still they started me out with the saline anyway but it worked too fast. 120 jumped to 129.
They decide to give me a Desmopressin injection which also dropped it back down. Yikes. I wish they would have foregone the Desmopressin. They had switched me to D5W (dextrose solution that is sodium free). I wish they had stuck with that because the Desmopressin even made it difficult to urinate when I came back home in spite of them also putting me on Lasix for the two days in between. That Desmopressin, at least as an injection, is a scary medicine.

A salt pill was the thing that finally got me to where they could release me. It was a lovely salt pill too and even gave me a tiny bump in energy. Hurray.

So now I have a huge bottle of them...300 tablets (minus a few)...sitting on my countertop. I know they don't have the glucose but they're oh so easy to take and won't bathe my teeth with sugar right now since I still need to get the teeth fixed.

Also I wanted to mention like you indicated how paradoxical the thirst thing is. Our bodies are crying out for sodium but for some reason send a signal for more water instead which just makes the situation worse.

The first time I ended up in the ER was for that. I was so thirsty that I drank 3 (12 ounce) glasses of water all in a row after not eating much salt for a few days.
(I also got the worst case of hiccups I ever had too. Since then, I figured out that hiccups are very often related to too much or too little sodium--some kind of electrolyte shift anyways.)

Sadly, there was a women who died recently for water intoxication and as I was reading the article I was mentally saying to doctors involved, "Why didn't you question the paradoxically cravings? https://www.dailymail.co.uk/health/...-lethal-mistake-death-35-year-old-mother.html

Hopefully with your book, more doctors will start to.

I'm sorry you were in hospital recently with the low blood sodium. My levels also corrected too quickly when I was hospitalised and I was given desmopressin too to reverse that situation.
Glad you are out now and that the salt tablets are helping.
As for the paradoxical thirst, it is so cruel. I think it is the triggering of our brain's second thirst centre (the hypovolemic one) and it is actually 'wanting' us to drink salty solutions. But of course why would anyone know that? You just drink water when you are thirsty, right? You make the situation worse, thinking you are doing the right thing.
The Daily Mail article is so sad. I honestly don't know sometimes how I'm still here, given how much water I was drinking and how severe the symptoms were.
Thanks for the kind words - fingers crossed my book might lead to stopping this psychogenic nonsense one day.

 

[serafim]

I do alot chinese traditional medicine

what medicine do you take?

and why do you ice your throat when you have a cold? isn’t it better to apply heat instead?

 

[Rufous McKinney]

what medicine do you take?

oh, I take a complicated customized mix of herbs prepared by an expert. There are around 37 in my basic formula. Another four I take for digestion.

why do you ice your throat when you have a cold? isn’t it better to apply heat instead?

cold feels good, heat does not. I apply heat alot to my neck, and to muscles etc, but don't drink hot drinks much.

I don't really drink the cold beverage, I sip on it. As cold in the stomach interferes with digestion.

 

[ruben]

oh, I take a complicated customized mix of herbs prepared by an expert. There are around 37 in my basic formula. Another four I take for digestion.


cold feels good, heat does not. I apply heat alot to my neck, and to muscles etc, but don't drink hot drinks much.

I don't really drink the cold beverage, I sip on it. As cold in the stomach interferes with digestion.

Are you in UK may I ask? And where is your herbalist? I reckon I must have seen 4 or 5 herbalists over the years without any real success.

 

[Bobby Peru]

I wonder if hypovolemia levels have ever been tested in ME/CFS patients after an exercise challenge. In other words, could it be one of the reasons for the common delay of Post-Exertional Malaise after exercise.

 

[Tammy]

I'm just the opposite. Since CFS, I am hardly ever thirsty. In the morning I fill up a small pitcher of water just as a reminder that I need to drink something and the goal is to make sure I have finished the pitcher by end of day. I have noticed the few times that I am actually thirsty is when my body is feeling better than usual all the way around. hmmm

 

[serafim]

cold feels good, heat does not. I apply heat alot to my neck, and to muscles etc, but don't drink hot drinks much.

I don't really drink the cold beverage, I sip on it.

jsyk cold lowers local immunity so you’re probably making yourself worse by drinking cold beverages. you might be better off using local anesthetic sprays or lozenges instead of ice

 

[Rufous McKinney]

Are you in UK may I ask? And where is your herbalist?

I see a person in California who taught at the acupuncture college and writes books.

He has 600 raw herbs inside his office. Most people who study acupuncture do not accomplish the herb protocol. Nor are they willing to invest in the inventory. its VERY expensive to maintain this supply of herbs.

If you walk into the office and you can smell 100s of raw herbs, maybe you're finding the correctly trained person.

Too many are SAYING they have the herbal skills, but they don't. I sent my brother someplace and he came back with jars of western pills and herbs: that is not CTM-based. Bang the Gong.

Acupuncture isn't used for chronic conditions: herbs are.

I thought I would mention he has never once stated he would cure me of anything.

 

[crussher]

I wonder if hypovolemia levels have ever been tested in ME/CFS patients after an exercise challenge. In other words, could it be one of the reasons for the common delay of Post-Exertional Malaise after exercise.

There was a study (mentioned in chapter two in my book) which suggested hypovolemia as one of big reasons for 35% drop in vo2 max in ME. It was by Farquhar (blood volume and it’s relation to peak O2 consumption and physical activity in patients with chronic fatigue syndrome). I’m sure there are loads of reasons for VO2 max drop but heart not having enough blood to work with has to be one of them.

 

[Judee]

I'm taking salt pills but still cannot keep my sodium levels up. Latest test still showing low even though I took a salt pill even a couple hours before that test.

I think my doctor will send me to a nephrologist now. I'm concerned they may say I have Polydipsia but my urine ph shows that I'm losing the salt because it was at the highest point of the ph range. Not high enough to red flag but still very high.

??

 

[crussher]

I'm taking salt pills but still cannot keep my sodium levels up. Latest test still showing low even though I took a salt pill even a couple hours before that test.

I think my doctor will send me to a nephrologist now. I'm concerned they may say I have Polydipsia but my urine ph shows that I'm losing the salt because it was at the highest point of the ph range. Not high enough to red flag but still very high.

??

Well, mention the RAA axis suppression in ME as a possible cause of the solute loss. It is probably worth going through their standard diagnostic procedures to make sure nothing else is causing the salt loss but if, at the end of it all, the best they can think of is psychogenic polydipsia, I'd put my foot down if I were you and give them a copy of my book!

 

[Donsboig]

This is an interview with Dr Harriet Carroll on the Standing Up to Pots podcast. She has done some interesting work on thirst and pots/long covid. I hadn't come across her before but she seemed intelligent and thoughtful, and her work sounds very interesting

[The POTScast] E170: Dehydration, thirst, POTS and long COVID with Dr. Harriet Carroll #thePotscast
https://podcastaddict.com/the-potscast/episode/165741615 via @PodcastAddict

Her website: https://lc-sc.co.uk/

 

[ruben]

I consider myself in the ME/CFS group of people but who knows. A strong thirst over the years has certainly been one of my symptoms

 

[Aidan Walsh]

Drinking 8 till 20 liters water a day can be deadly. It is very dangerous. It also lower you natrium levels and can causes a heart rhythm disorder. Drinking al lot can also be caused by diabetes isipidus.

Yes, a lot have diabetes insipidus they need daily Vasopressin, others I think could be Nutcracker Syndrome they need the proper gold standard tests done like orthostatic proteinuria urine test called (ACR)Albumin Creatinine Ratio urine tests one in 8 hours supine, then the other during the day.

Proper venography tests of the vein left kidney & color Doppler ultrasound. I have an abnormal size left kidney on ultrasound abdomen but the color doppler is the one needed.

Below is the story of a 21-year-old Medical student who is now a GP full time in the UK & the author of this paper below

 

[crussher]

I'm the OP.

I recently gave a talk to the Irish ME Trust about how low blood volume might cause thirst in ME/CFS, available here.

I also have a short YouTube talk arguing against 'psychogenic polydipsia' here.

 

[ruben]

Is low blood volume then and microclots all basically linked.

 

[Aidan Walsh]

I'm the OP.

I recently gave a talk to the Irish ME Trust about how low blood volume might cause thirst in ME/CFS, available here.

I also have a short YouTube talk arguing against 'psychogenic polydipsia' here.

If you had a blocked Artery or Vein of course one would have low blood volume. Ron Davis test they are trying to develop is based on blood going through veins issues it does not have to be thick or clotted blood its likely narrowing of the veins.

If a kidney is blocked it flows the opposite ways & one also looses nutrition. There are too many theories about biological idealogies there is not enough structural research or proper imaging.

Aspirin is also used in Nutcracker Syndrome about 100mg a day it thins the blood the baby coated type I take 1 & break one in half with water & food in stomach.Some feel better gaining weight. Most need Surgery

 

[Donsboig]

On the blocked blood vessels point: there are a couple of studies showing that people with pots who were found to have a compressed vein in their pelvis or abdomen sometimes found that their pots resolved when the vein was stented. I can dig out the studies if anyone is interested.

@crussher or anyone else, do you have thoughts on using the WHO homemade oral rehydration solution (half teaspoon salt plus 6 teaspoons sugar per litre of water) vs normalyte/dioralyte? As you say in your talk, normalyte isn't available in the UK and dioralyte is very expensive if you want to drink multiple litres per day

 

[Aidan Walsh]

I would think anyone using salt/sugar or oral solutions rule out all the compressions first, if a Doctor asks about US Abdomen suggest the gold standard Color Doppler test or required venography tests.

Some places do these privately. Yes, the WHO oral solution likely would be better than products.I doubt if I with NC I can use a stent I have also metal allergies.

Even belt buckles trip me off or clips on watches, I can only wear pure 18kt Italian gold. Most of us have also urgency & frequency to urinate & some also lose water in spontaneous spinal fluid leaks which contains also glucose.

I also have clear liquid that leaves my left nasal passage & dismissed by numerous Doctors. My left stomach swells it also gets worse with solid food & upright position which can be also a symptom of Nutcracker Syndrome