[mmorse1217]

I have every single one of your symptoms and arrived at almost the same conclusion: taking electrolytes tablets intended for workout recovery (just sodium, magnesium and potassium, no sugar) improves alleviates almost all of my symptoms and gives me energy I haven't had since I was 12. I haven't been able to get a doctor to take me seriously for ten years. I will try the potassium + magnesium tablets at night instead of a generic multivitamin. Thank you so much for your comment.

Do you have any additional information about this relationship between CSF and electrolyte deficiency? Do you know anything about possible upstream causes of electrolyte deficiency? Any pointers would be super helpful.

[Nemi]

I also started with general “electrolytes” but found that one of my problems was that I was getting way too much sodium and not enough potassium. This was the primary driver of my post-meal somnolence. Most general electrolyte supplements are primarily sodium, and this was exacerbating my symptoms in some cases. I now only eat meals that have a reasonable amount of sodium and then take a couple of potassium tablets a couple of hours after eating if I feel myself starting to get a little sleepy. 30 minutes later I am ‘back to normal’, whereas I used to be sleepy for several hours as my body tried to bring my electrolytes back into balance. I also would have massive unquenchable thirst during this that I now don’t have.

I have read no studies that link CSF production with electrolyte deficiencies. This is a hypothesis of my own with no backing, so take it for what it is worth. Having said that, there have been many posts on HN on the recent studies on CSF https://news.ycombinator.com/item?id=39723704. I made the connection with CSF production and electrolytes when I was reading more about CSF production and it jumped off the page at me that potassium and other electrolytes are used to create CSF. It all just came together for me why taking potassium has helped me so much.

[mlloyd]

>I also would have massive unquenchable thirst during this that I now don’t have.

Have you been checked for diabetes? The thirst is one of the bigger symptoms.

[Nemi]

Yep, it came up on my radar early on but all indications are that it is not diabetes. There was a time where I was looking at it pretty hard.

[mmorse1217]

Thank you so much for sharing your experience and your research in the other comment. I understand that it's just a hypothesis, but I had almost given up and believed that this is just how life is now. I went to the ER for heart palpitations and told the doctors to check electrolyte levels and they flat out refused and discharged me. Between this and the potential renal issues, I at least have another avenue to try to address the underlying problem.

I'll try the potassium supplements and report back. Around how much are you supplementing each day? People shy away from potassium supplementation because it can cause heart palpitations, but I already have those, similar to yours, and RDA of potassium is over 3000mg, so it's only up from here :) Thanks again.

[Nemi]

I hear you, I was in the same boat. I had been to the doctor many times without much luck. I am outwardly healthy looking. Thin, fit with no other problems. I had a good doctor, but doctors are used to dealing with acute problems in people that are simply unhealthy. When they see me they are often dismissive that I have any real problems. I had a pretty good rapport with my doctor so he would do tests and we would have some good dialog, but he retired and, honestly, it is just too frickin difficult to go through the process of bringing a doctor up to speed on what my history is.

Fortunately for me I was able to retire at 50 and I am an avid consumer of information, so I spent an inordinate amount of time educating myself. I went down many wrong paths (as another commenter pointed out, diabetes can cause a lot of these symptoms). I wish I could say I brute forced my solution, but it was some innocuous comment on HN about potassium deficiency that made me look into it, and the rest is history. It was my “break through”, so to speak.

I take anywhere from 600mg to 800mg most days spread throughout the day depending on meals and activity level, but as much as 1000mg some days. Never all at once.

On a related note, here is the thing about measuring electrolytes – your body goes through great efforts to make sure your electrolyte levels in your blood are in balance. But here is the kicker, only sodium ‘primarily’ resides in your blood. The other electrolytes primarily reside in your other tissues. For example, potassium is mostly held inside your cells like muscle tissue. As a matter of fact, this is how muscles contract. When muscles contract, potassium temporarily moves out of the cell and sodium moves in. Then in a minute potassium and sodium reverse back to normal. This is one reason your muscles fatigue and then become usable again a short time later. When your cells are short potassium then your muscles fatigue quickly and don’t bounce back.

You can’t measure this level of potassium. Your blood levels might be just fine, but your cells may be deficient and you will never know. It is the same with calcium and magnesium (bone). If you ever get a blood test and your electrolytes are off, you probably need to be in the hospital. It means shit is so bad that your body has lost its ability to compensate. But it also means that if you go to the doctor and get your electrolytes tested, they will likely be in the normal range, but that does not mean you aren’t deficient.

[mmorse1217]

Sorry for the late reply, I pick up 99mg potassium + 200mg magnesium and had an unbelievable night's sleep and many symptoms improved dramatically. The second night was confounded by an evening workout, which can mess with electrolyte levels, but you have given me hope again. I just want to thank you again for continuing the tradition of changing someone's life with an innocuous HN comment :)

I see what you mean regarding the electrolyte measurements. After reading a bit about the disorders that you mentioned, it seems like they test for serum and excreted electrolyte levels to make a diagnosis. But based on your point above, these tests can be inconclusive. Were there certain diagnostic tests that were helpful to you in coming to your conclusion, or was it largely trial and error based on symptom management?

[Nemi]

No, I never had any tests beyond the simple blood tests checking my electrolyte levels. This was before I realized that those tests won’t show you the problem. I simply made a hypothesis and tested, over and over.

I have toyed with the idea of visiting a nephrologist, but I just can’t psych myself up for the long slog that would be. I live in a fairly large city but given the rarity of these syndromes, it would not surprise me at all if any local nephrologists have even encountered anyone with one of these conditions. I have also considered seeing a ‘functional doctor’, but just have not gone down that road. Honestly, I seem to have my symptoms under control, so what they could add at this point? There is no treatment or cure for this, only managing symptoms (assuming this is what I have, to be fair).

It all makes sense to me though. Though this is something that got bad enough for me to make a concerted effort to figure out just in the last decade, if I reflect back on my life I have seen problems associated with it back into my 20’s. In my case, I don’t think it is something that “happened” to me, but something I was born with that is just progressing as I get older.

By the way, I was re-reading a comment of yours from up above and I realized that you were referring to heart palpitations like you were already getting too much potassium. Here is the thing – you can get heart palpations from too much AND too little potassium. Also from too little calcium. Just food for thought.

I have updated my profile with my contact info. If you ever go down the route of getting diagnosed or have any other questions, feel free to contact me anytime. Good luck!

[Nemi]

Sorry, you asked about ‘possible upstream causes of electrolyte deficiency’.

In my case I believe it is caused by an undiagnosed kidney problem loosely called ‘salt-wasting syndrome’. There are many types, but they all revolve around a genetic disorder where the tubules in your kidneys that are responsible for removing different electrolytes from the urine and retaining them are malformed and are not able to keep the electrolytes like a normal kidney does. Here are a few I found in my research:

-Bartters Syndrome- https://rarediseases.org/rare-diseases/bartters-syndrome/

Many different variants, so this is a possibility. Type 5?

-------------------------

-Gitelman syndrome- https://rarediseases.info.nih.gov/diseases/8547/gitelman-syn... Symptoms include tingling of face

————————

Fanconi Syndrome https://www.merckmanuals.com/home/kidney-and-urinary-tract-d...

I my particular case, I believe I have a type that does not impact sodium, but does potassium. When I eat a high sodium meal it causes me to pee a lot to try to get the my sodium levels back to normal. However, my body can’t retain potassium when it does this (and since I was eating much more sodium and much less potassium than my body required) I end up with normal sodium levels but low potassium levels. Taking potassium a few hours after a meal “fixed” this.

Short of genetic issue like this I am not sure what could cause it. I think this can be an early symptom of Diabetes, but don’t know much about that. What I am talking about here has got to be rare, so it may not be applicable to you.

Just another anecdote – when reading some of these links it made me remember another interesting symptom I used to have that I did not know was related: I would get “facial numbness”. Specifically, my lips and the immediate surrounding area would feel slightly numb. Usually in the morning after a poor night of sleep. I would remember feeling this on the way to work in the car. It would contribute to that dazed feeling I felt like I would swimming through a mental fog.

Oh, and one more! I also don’t get nearly so hung over from drinking! This was a surprise for me. I have always drank a lot of water while drinking alcohol, but I would always have the worst drained feeling the next day with such a headache. The headache would last all day. However, if I now take some potassium while drinking and throughout the night (depending on how much I drink), I often don’t have much of a hangover. This amazes me! I am 57 and used to drink a lot when I was in my 20’s. I had some friends that could be normal the next day and it always blew my mind. Now I think I know why. They have normal kidneys!

[mmorse1217]

Thanks for these references; I've been going down the research rabbit hole :)

I check my A1C every six months and I'm ok. I'm in decent shape also: regularly powerlifting, running, etc. I have a suspicion that there is a genetic component for me; there are some autoimmune issues in my family that haven't been attributed to a particular disorder and there is a chance of an underlying condition causing these autoimmune-like symptoms.

I don't think I've noticed facial numbness, but my limbs fall asleep quickly and my hands fall asleep if I am reading my phone/book while lying on my back after a couple minutes. I also drink a TON of water when drinking alcohol and am hungover for days afterwards. Since my electrolyte revelation, I started knocking back pedialyte before sleeping which helped a ton.