October 6, 2014 at 9:49 am #732
Hi everyone. I have been reading this site and am amazed at all the knowledge!
I am hoping someone here can help me.
Four months ago my kidneys failed and I started dialysis. My reaction was so horrific that it eventually led to me and my GP diagnosing hyperPOts, EDS and histamine/mast cell issue. She does not know enough to test or refer anywhere.
The nephro for dialysis will not discuss these diagnoses or alter treatment. Badly includes passing out for hours, cramps, brain gone, can barely speak, tongue numb, bp way up over 200, adrenaline surges, shaking, jerking and I dislocated a rib the other day. The nurses are oblivious to the reaction and they and the doc ignore me when i try to tell them.
Their emergency high bp med is adalat, which bring bp down to normal, but pulse doubles to 140, chest pains, racing heart, shakes and worse symptoms. They only care about the main bp numbers and not symptoms or pulse rate.
I am really scared. I am in Canada and can’t find a doctor yet. Is anyone here on dialysis, and are there any suggestions on how to deal with these symptoms, the medical staff or the overall of making POTs worse. After a few months, I can no longer be upright more than an hour with out getting sick.I have lost any hint of a life I had. I only feel functional with litres of water and spoons of salt, but that is contraindicated with kidneys – on severe fluid and salt restriction.
thanks for any suggestions, and sorry for the freak out.October 7, 2014 at 7:00 am #5056
Blimey, you poor soul! Did the doc say what had caused the kidney failure ?
Have you ever had a head MRI, I ask this because, I wonder what the state of your cerebellum (lower part of hind-brain) is. I wonder if it is blocking CSF flow between the head and the spine. This could build up pressure in the head making it more difficult for the heart to deliver oxygen to the brain – hence the high blood pressure (necessary to get the oxygen to your brain), or tachycardia when this mechanism was pharmacologically removed, this could cause lightheadedness and symptoms caused by raised demand on the heart, which could be palpitation, chest tightness and that sort of thing.
It might explain why you operate better lying down, as you no longer have to compete with gravity.
I am not a doctor but I am keenly interested in nutrition because I think it’s the way forwards for many of us. I would agree with the salt but also want to suggest Multivitamins, Magnesium (epsom salt baths, very beneficial) etc but I’m not sure what you can have with your kidney condition, can you enlighten me what is allowed and what is not, nutritionally? I have a vague recollection of restricted potassium, which is a shame because it sounds like you need some.
Let me know and I’ll have a think on it.
(UK)October 7, 2014 at 10:09 am #5059
You are SO right on! How do you know that? lol
I totally agree with you about the future of nutrition. the right supplements in the right form can help with so many things. the new medicine is nutrigenomics – the influence of nutrition on genes.
I did the 23andme genetic testing, and use high dose B’s. Lots of magnesium – epsom salts, supplements, and oil spray and it never feels like enough. I do sneak potassium, since my legs go stiff if I don’t take it, but it is ‘forbidden.’ Testing of it is normally a little low, but too high if I supplement. Some days I say “screw it” to all the restrictions because my body seems to need potassium, salt, fluids, and low protein to function.
To digress, its funny because this weekend was a ‘screw it’ weekend and i drank litres of water every day, ate tons of salt, felt amazing with lots of energy, and at dialysis, my weight and numbers were normal. lol, so ya gotta wonder some times.
Can I ask, why do you say that about potassium?
They don’t know what caused kidney failure. They don’t care. They suspect the urinary reflux I had surgery for 25 years ago. That doesn’t make sense to me, but it does when you consider EDS/POTS and bp fluctuations, which nephro denies I have.
Ever since I heard of chiari malformations, I have wanted a head MRI or CT scan! It explains a lot. Childhood killer headaches where i banged my head against a brick wall to help the pain. Then, and now, some mornings I wake up and can’t move my arms. Pain in the base of my skull with pressure out the top of my head – all my life.October 8, 2014 at 5:53 am #5061
I started having swollen hands at one point and I thought it may be my kidneys, so I looked into it a little, my kidney related blood tests went up and down (and back up). I vaguely remember stumbling across the potassium/kidneys thing when I watched a lady online preparing chips for someone with kidney problems – all that faffing about though! More recently I read about protein wasting in kidney problems but that’s as far as I went into it.
I know many of us have, or have had problems with urination, due to the nature of EDS, where our bladders change shape (or correct position) and sensation-wise, we feel as though we have finished urinating but really there is still a residue in the bladder. This can lead to many issues:-
Frequency (because we are not emptying fully in the first place)
Incontinence (because we are not always aware when the bladder is full either)
Bladder infections & subsequently kidney infections (due to the stagnating retained urine)
Backing-up, as you say, to the kidneys (really not good apparently)
So it is important that we make extra sure our bladder is empty, each and every time we urinate. I find, by physically gently applying pressure on my lower abdomen, where my bladder is, after I think I’ve finished, usually brings forth some more urine.
Let’s face it this condition is multi-system, so I think it helps you understand it better (and react to it) if you know the basic functions of each system – so I’m working through it every moment I can, though I think it will take me a lifetime!
Have you looked at mineral deficiencies, as a cause for the kidney failure ?
(UK)October 12, 2014 at 8:48 am #5067
I never knew that about bladder and EDS! yet I have always felt it didn’t empty properly.
Also, never heard of mineral deficiencies as a cause of kidney failure. Can you tell me more about that?
I’d love to know more about how this affects each system and your research on it. Do you have it posted anywhere?October 12, 2014 at 6:38 pm #5068
Another problem I had at one time was hesitency passing urine. I knew I wanted to go but nothing was happening, once I got to the loo. When I did manage to get started, there was no longer a powerful stream, it was more of a moderate trickle.
I believe there’s all sorts goes on because of EDS, things stretch, or lose their capability of retaining their integrity, tubular vessels become flatter, vessels that should be strong enough to resist external pressure don’t.
With regard to the kidney issue and mineral deficiencies, this is not something I’ve looked into but I’ve found so many other aspects of our condition relate to some deficiency or another, that I thought there might just be some connection and wondered if you felt inclined to explore it. After all, it may be something you can easily correct by a nutritional shift.
Unfortunately my time is greatly absorbed trying to get myself right at the moment (and I believe I’m certainly on the right path). Along my journey, I have often publicised on this site my experiences and findings, as have many others, there’s a wealth of information here, so whatever aspect you are wondering about, just pop a word into the search panel above, you may be pleasantly surprised by the variety of people’s experiences and posts on this website.
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