Replenished
Senior Member
- Messages
- 247
Thank you!Stay strong friend! Everything is going to be alright! There is hope!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thank you!Stay strong friend! Everything is going to be alright! There is hope!
Orthostatic hypotension is another name for it. I think they do a simple test laying down w/ blood pressure check in both positions (laying down then standing up). It really means the adrenals are not working, hence the recommendation by manasi12.
Adrenals are overworked by immune activation and become tired. Also keep in mind the adrenals have a set of hormones called mineralcorticoids which control electrolytes. I used a set of supplements to restore adrenal health, let me know if you want the list.
@Replenished are you able to tolerate fish oil supplements. They helped considerably with my dry eyes and dry skin when I was able to take them.
At some point, I will try to add them back into my supplements because everything is drying out on me again.
I just wondered if your cells are not able to retain the electrolytes and hydration because of a lipid problem.
Dr Garth Nicolson thinks some of us have damage to our lipids although he recommends something called NT factor. However, that is too expensive for me plus has ingredients that I cannot have because of allergies.
Fludrocortisone was prescribed by my cardiologist for POTS. I had my rate go to almost 160 just on standing. And I used to get dizzy, spaced out and shaky if I don't eat often. Fludrocortisone along with beta blocker is helping somewhat. I have to take 5 - 6 gms salt and 2 - 3 litres of water. But I take only 1/4 tablet of Fludrocortisone as I have hyperadrenergic POTS. My BP increases on standing instead of dropping . So more difficult to treat. I have secondary POTS due to Sjogrens.Thanks. No I haven't tried Fludrocortisone but it has popped up in my search a couple of times. I know it is used to treat low aldosterone / adrenal insufficiency. Something out of balance with Aldosterone seems to be one of the things that can impact hydration levels so I am definitely looking to explore that. Is your Fludrocortisone prescribed by a doctor? If so, for what condition? Wondering what I need to ask my doctor for to get it prescribed.
Yes I do get dizziness etc when standing up. I've always had somewhat low blood pressure and definitely feel recently like my heart is playing catch up/palpitating when I stand up quickly. Although if I check my blood pressure from laying to standing, I don't match the numbers to be classed as having POTS.
Sjorgrens I was tested for which came back negative. Also I don't have dry eyes etc so I don't think its that.
Very interesting.. I also suspect adrenal exhaustion due to constant stress and repeated infection. Though I'm diagnosed with Sjogrens and POTS, I think adrenals are important as whole picture. Please share supplements which helped you. I'm very sensitive to everything but still would love to try.Orthostatic hypotension is another name for it. I think they do a simple test laying down w/ blood pressure check in both positions (laying down then standing up). It really means the adrenals are not working, hence the recommendation by manasi12.
Adrenals are overworked by immune activation and become tired. Also keep in mind the adrenals have a set of hormones called mineralcorticoids which control electrolytes. I used a set of supplements to restore adrenal health, let me know if you want the list.
Very interesting.. I also suspect adrenal exhaustion due to constant stress and repeated infection. Though I'm diagnosed with Sjogrens and POTS, I think adrenals are important as whole picture. Please share supplements which helped you. I'm very sensitive to everything but still would love to try.
Orthostatic hypotension is another name for it. I think they do a simple test laying down w/ blood pressure check in both positions (laying down then standing up). It really means the adrenals are not working, hence the recommendation by manasi12.
Adrenals are overworked by immune activation and become tired. Also keep in mind the adrenals have a set of hormones called mineralcorticoids which control electrolytes. I used a set of supplements to restore adrenal health, let me know if you want the list.
Do you have the list?
I've got a double whammy here now. Dehydrated and inability to concentrate urine normally so I'm frequently urinating, but I also now seem to have developed a inability to hold large amounts in my bladder. Previously I could get away with only waking up a couple of times at night to urinate as I'd become good at holding large amounts in my bladder (I had to because the bladder fills quickly). Now after years of this, I seem to have lost this ability and my bladder feels like it needs emptying every hour or so. I'm on about my fourth wee during the night so far and it's constantly waking me up with the urge to go.
How can one recover in such a predicament? Any good remedies for frequent urination? I know there isn't much I can do about the diabetes insipidus type lack of ability to concentrate urine but I need to get my bladder relaxed and able to hold large amounts again because right now it wants to empty constantly and it's preventing me from getting any decent rest.
I know this problem very well.
I had to have a camera last year in Tract because of it.
Cure for me is drink only mineral water. Sparkling is best.
No other fluids
Should resolve
Have you tried magnesium?
I have exactly the same issues and it was the first symptom I got investigated by the NHS nearly 20 years ago. I tried desmopressin which just made me feel "wrong". I need to go to the toilet an average of 10 times a night - full bladder, clear urine just as you say. Sometimes only 10 minutes passes before the urge again. The other week I reached a new record of 17 visits between 1am & 8am.
The doctors are useless and it increases their suspicion that we are all anxiety-ridden hypochondriacs.
Obviously this impacts massively on sleep and therefore exacerbates the problem. Sometimes when I have taken ibuprofen at night this has helped and allowed better sleep - although it has it's own issues for stomach etc and not sustainable long-term.
I have tried many of the suggestions in this thread all with no luck either. Mineral type supplements just upset my stomach however small the dose and magnesiun sometimes makes its worse.
Sometimes I find our symptoms are cyclical and it takes may months or years for mine to move to something else before they have a "greatest hits" tour just to remind you they are still there...
What I am saying is that it feels desperate now but it may calm down eventually which is really no help - sorry.
You're a true conundrum, @Replenished, and I dont know how you deal with it. This is really baffling .... I wish I had something more substantive to offer ....it seems that this temporarily stops the cascade of losing fluids and allows the body to retain what I drink for a bit longer. A few hours later this positive effect wears off but, yeah, sweating is the only time I really see my urine concentrate.
Have you considered opening another thread with those two meds in the title, asking the question "DESPERATE !!! ...Does anyone know of substitutions for these two discontinued drugs?". It's amazing how much members here keep up with stufff ...Chlorpropamide and Clofibrate, both shown to reduce urine output/increase urine concentration but both have been discontinued.