I cannot deal with this anymore - Dry, depleted, dehydrated, weak, lifeless

Replenished

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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.
I would love the list, please share.
 

Replenished

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@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.
I can tolerate fish oils. I don't notice anything when I take them.

Thankfully I don't have particularly dry eyes. Skin is ok most of the time in terms of dryness but can get bad sometimes due to dehydration. The main thing is more the dry mouth, clear urination and feeling completely dehydrated and depleted.

I am currently taking NT factor on someone else's recommendation, but I've not noticed any improvement in my symptoms.
 

manasi12

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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.
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.

I don't know where you are located. Generally neurologist or cardiologist will prescribe Fludrocortisone. Instead of mentioning urine quantity, consider mentioning your problems like dizziness, palpitations on standing. They can be easily tested by tilt table test.

Meanwhile you can test this at home with BP monitor. Focus more on heart rate on supine and standing. Search for poor man's tilt on Google. In my opinion, POTS is diagnosed only on the basis of heart rate increase of 30. BP can go either way.
Even if doctor is not aware of POTS diagnosis, if you mention symptoms increase on standing, they are usually aware of orthostatic hypotension.
 

manasi12

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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.
 

LINE

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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.
Adrenal activity is present when there is an immune reaction, that immune reaction can be from pathogenic invasion but also from toxin invasion. https://patrickrambling-pb.blogspot.com/2012/02/adrenal-fatigue.html
 

Replenished

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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?
 

LINE

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Do you have the list?
I worked off the work of Adelle Davis from her book "Let's Get Well", chapter is Stress. The concept is pretty simple in that the adrenals are activated when enduring stress. Stress is commonly known as psychological but stress comes from other areas such as biological stress. Biological stress can be from infections, toxins, trauma etc.

The adrenals are really your natural pharmacy since they secrete a multitude of hormones. Everyone has heard of cortisol but there are quite a few more. For example, some of the androgens are secreted there. Cortisol regulates blood pressure, anti-inflammatory processes, influences immunity etc.

Adelle Davis quotes Hans Selye about the stages of stress (Resistance, Alarm and Exhaustion) and when entering unrelenting stress then the exhaustion stage begins to set in. She states that nutrients become exhausted and by replenishing these, then the adrenals will begin to perform better. This was the case for me. For instance, with exhaustion, vitamin C becomes depleted and the adrenals become damaged. I followed her protocol and was able to get stronger. I have listed the other nutrients on the link.

https://patrickrambling-pb.blogspot.com/2012/02/adrenal-fatigue.html
 
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Replenished

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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.
 

LINE

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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.
Have you tried magnesium?
 

Replenished

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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
What is it about drinking just mineral water that you think resolved the issue for you?

Water feels dehydrating to me. Be that mineral water or any other type of water.
 
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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.
 
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Replenished

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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.
Thanks for sharing your story and sorry to hear you are dealing with this. Were you tested for diabetes insipidus when this all started then?
I completely get what you mean when you say Desmopressin made you feel "wrong". I didn't feel good on it either than any reduction in urination was very short lived.

The only thing that helps me, is possibly the opposite of what one would think is helpful. But sweating, be that through heat or exercise, enables the urine to concentrate/retain. You may think that's due to the dehydration from sweating and to some degree it is, but 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.

There are a couple of other drugs which from reading sounded promising for such issues; Chlorpropamide and Clofibrate, both shown to reduce urine output/increase urine concentration but both have been discontinued.
 
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Yes I was tested but it is not something I could handle now as my M.E is severe/very severe.

I am sorry not to be offer any help and as you mentioned that you had not received an M.E/CFS diagnosis (I received my severe diagnosis from St James Leeds Immunology Dept) I would encourage you to continue to press for any tests/consultations you can possible still get on the NHS.
 

lenora

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Hello @Replenished.....I almost get the feeling that you aren't in favor of doctors (and I stand to be corrected), but perhaps you should see an endocrinologist. At least proper blood tests will be performed.

Yes, fish oil and Biotene Gel(for mouth secretions) are probably as good as you're going to get at this point.

@Wolfcub.....you've been missed, but I do understand the necessity for some time off. How are you? Still in the same place, and busy getting wood ready for the winter. Well, it's only May so I guess you can take more time off. Seriously, though, you had a couple of us worried....we welcome back. I hope your health has held steady during this time. Yours, Lenora.
 
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I think you read an old post, back on page one @lenora .... sadly @Wolfcub 's still MIA, but I know we're all hoping ....:(

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.
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 ....
Chlorpropamide and Clofibrate, both shown to reduce urine output/increase urine concentration but both have been discontinued.
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 ...


Maybe worth a shot???