firewatcher

Found this on a pulmonary nurse continuing education site:

"Peripheral vasoconstriction ? Oximetry relies on detecting a stable pulse. In order for pulsatile flow to be detected, there must be sufficient perfusion in the monitored areas. If peripheral pulses are weak or absent, readings can be difficult to obtain. This can give false low measurements compared with central saturation, which perfuses the brain and other vital organs. Patients most at risk for low perfusion states are those with hypotension, hypovolemia, and hypothermia, and of course those in cardiac arrest. Patients who are cold but not hypothermic may have vasoconstriction in their fingers and toes that can also compromise arterial flow.

If vasoconstriction is a problem, try moving the sensor to the ear lobe or warming the extremity to enhance perfusion.

Dysrhythmias such as atrial fibrillation may cause inadequate and irregular perfusion and unreliably low saturation measurements."

I can't even begin to guess what an irregular HR like ours would do. We just don't perfuse properly!

Natalie,

My test was to screen for central apnea as a cause of polycythemia (too many red blood cells.) I'm hoping that Mack's Mom will weigh in on this since she had a walking desaturation recently.

Go to your doc and keep us posted, I'll post my results once I get them.

I just had an overnight oximetry last week, but I don't have my results yet. I'd go to your pulmonologist to discuss it, but don't freak out yet. The respiratory nurse told me that any pulse ox meter that is less than $1000 isn't going to be medical grade and will be less accurate. Also, if you are a constrictor and your hands go cold, it will read as a desaturation. So there is room for error and false readings. BUT, you need to get it checked out so that you all know and you can get the appropriate treatment.

Keep us posted!

Dani,

I have a friend whose Mother had been treated for PAH for the past 20 years. She was just DE-diagnosed by two docs this past week. Even though she had been treated for it, she actually never had it! The previous docs were so sure, they never did a cath and mis-diagnosed her. It turns out that she has a hole in her heart that could and should have been found and fixed 20 years ago! Get a good doc, insist on the proper tests and don't worry! We all know how many things we have all been MIS-diagnosed with in the past. Try not to stress, learn all you can and stand up (OK, sit up) for yourself!

Let us know what you find out.

Firewatcher, do you think your dysautonomia is related to your DSPS? I'm curious whether mine might be.....

My Sleep doc doesn't really know. My Mom and Grandma both have DSPD too, but don't have any overt POTSy things going on. I also have been said to have a pineal cyst that has taken over the pineal gland, but they are very common. Since starting a morning beta blocker (which destroys melatonin) and then supplementing with 1.5mg melatonin at bedtime, I've had some of the best sleep I've had in my life! It is still almost impossible to get up early though. We can get to sleep at a decent time, it is the waking part that is hard to change.

Hi Jennifer!

Sorry we have not "chatted" in a while... I haven't been spending a much time here on the boards lately. More because I am on overload with health issues than that I am feeling better and hitting the town. I am exhausted, but I saw this thread and wanted to comment. I hope I make sense!

First, I am sorry that you are having to go through this too on top of everything! Hopefully it will stay as stable as possible, and causes the least amount of problems possible. But, I am glad that your doctors caught it before it progressed.

Your dr. does not sound like they are the most supportive or proactive of doctors. Maybe over time you can find a different one that is willing to do more than read test results. Those drs. are super-frustrating!

I wanted to chime in here to not only send you my well wishes, but also with discussion of my own recent medical issues in that area... Hmm, where to start?

My gyne sent me to Urologist when I was having increased menstrual pain and bladder pain/cramps/contractions. Long story and semi-difficult to tease out what is what... Have you seen a Urologist? Anywho, first Uro. was a dud, second is much better. They have helped me to see that my shrugging of this occasional pain may not be too smart and are doing a good work up to see what all is up. So far I have learned that I have enlarged kidneys and a huge trebeculated bladder. I am still in the midst of the workup which has included urine testing, ultrasound, cystoscopy, and urodynamic testing (I hold insane amounts of urine- I almost overfilled their cup!). I still need to get my CT scan done and go back for my follow up appmt. to learn what all came from all this testing. I got a UTI from the cystoscopy and that has slowed me down from my already slow self. And I am working on adjusting to CPAP that I started a couple of weeks ago... Way to much medical crap!

Have you had any of these tests?

For me they were projecting that either this is my weird "normal" or that I have neurogenic bladder. He explained that the kidneys can become enlarged if the pressure in the bladder is too great and urine leaks back into the kidneys. This can then cause damage to the kidneys. So, I was not sure if they have looked at the possibility of structural issues or neurogenic bladder?

How did they test your GFR? Are you still taking prescription meds or only herbal meds? Any chance meds you took in past or current could contribute to kidney function? Any indication of a hereditary issue? what symptoms do you have?

I think that is all for now. Time to sleep... hope that made sense... I will try to check back tomorrow.

I have more like the opposite issue...I urinate too much and my kidneys are smaller than they should be. I've had a CT, ultrasound and more 24 hour urine collections than I care to count! She figured my gfr from several years worth of serum Creatinine measurements compared to several Creatinine Clearance tests. I've never had a urinary tract infection or stones. I'm in the midst of overnight oximetry to find the cause of a seriously elevated RBC/hematocrit with a low-normal EPO level. I'm still on standard meds combined with the herbal meds which are screened for cross incompatibility. I've never taken any nephrotoxic meds in the past, but do have a pseudo-family history of kidney disease: my Grandfather died from it, but he had multiple ongoing issues. I don't have any symptoms...yet, just symptomatic lab work.

I'm sorry that you are dealing with all your issues! I was hoping that you were well and living life. I hope your Uro can get you getter, I've known several people with kidney reflux and the testing is NOT fun! Be Well!

Welcome!

I could have written a lot of your post myself. I have a circadian sleep disorder called Delayed Sleep Phase Disorder; basically I am a genetic nightowl (hence the name and avatar.)

I'm also very flexible but not hyper-mobile. I have had most of my dysautonomia symptoms since I can remember, the earliest is age 6. Sleep deprivation does WEIRD things to me too, so yeah, your tilt is going to be fun.

Hey Jennifer-

Tell me what Stage 3 means. How many stages, etc. In an odd way, it's good to have confirmation. You've suspected this for so long.

We've already spoken about this, but I'm suspecting that your kidney problems & polycythemia may be attributable to thickened blood.... Just another avenue to explore when you feel ready. The good news- relatively easy fix

Gentle healing hugs-

Julie

Julie,

There are five stages of Kidney disease. At stage 4, major complications begin. Stage 5 is called End Stage Renal Disease or Kidney failure and they look for transplant or dialysis options. Right now, I am stable, but the doc said that any bout of food poisoning or diarrhea (severe dehydration) could send me into stage 5 quickly (Acute on Chronic Kidney disease.) She did not think that I would progress quickly, since I've been where I am for five years; but that I need to take steps to preserve what function I still have.

I do think that hypovolemia/thick blood probably caused this, since they've scanned, stuck, ultrasounded and tested everything and found no "cause."

I am so sick of doctors.

((((((((((tearose))))))))))))))

I am truly appalled, but not surprised.

May God bless you with peace and compassion and healing.

That's concerning, yet hard not to wonder--is this dr correct? Did she explain on what basis she diagnosed you?

I suspect that this doc is actually correct. She based her dx on my past labs, they are just too consistent. Since my numbers are the same over the last 5 years and my POTS treatments only began two years ago, the numbers haven't really changed. The only thing that seems to make a big difference is the level of hydration: more fluid and meds = better numbers/function. Unfortunately, it means that my unmedicated condition is still bad. The meds and fluid just make the function better, like insulin for a diabetic.

I don't really think she used that big brain that she is known to have, and why I saw her. But I will see her again in 6 months, and we'll go from there.

I'm hoping that you may just surprise that doctor.

That is fantastic news that you are seeing improvement through the OMD route.

Keep up the good work.

I'd be interested in hearing more details about what is involved with that when you're feeling up to it.

Sending a prayer out to you for your health and healing.

I am hoping to surprise the doctor too.

As far as the Chinese medicine stuff, it is weekly acupuncture/moxa visits and prescribed herbal therapy. The herbs are medicine, not supplements, and are researched and approved by me and my pharmacist Dad. My GP is reluctantly on board. I have found several PubMed articles on certain Chinese formulas that can help CKD, where drugs don't help. My OM doc seems up to date on these, but treats one thing at a time...in order of presentation.

Did you want more info on the OMD thing or the CKD?

Thanks guys,

lieze--the OMD (Oriental Med Doc) has primarily been treating my kidneys, that is actually where he says the problem is and it is the one organ system that overlaps both Eastern and Western medicines. Actually my numbers are better now than they were before I started.

Dizzysillyak--as far as the POTS and the kidney disease, I have no idea. I have some suspicions about chronic hypovolemia and kidney damage, but the doc was not willing to talk to me on that.

The nephrololgist said that once your kidneys suffer "chronic" damage, they don't come back and that "managing" it is what she is intending to do. Her advice was to keep hydrated and keep my blood pressure down...yeah right! She's got NO clue. I guess I just won't stand up or move.

Well, I get to add another diagnosis to my list after today. I saw a new Nephrologist today and she confirmed that I have stable Chronic Kidney Disease (stage 3A, gfr=50.) She would not venture any guesses for a prognosis since there is no known "cause" for me to have it. I really don't think that she either believed or cared about the POTS, but at least she agreed to monitor me yearly. I guess that's really all I can hope for.

I've had very good success with Japanese, NON-INSERTION, acupuncture treatments. My acupuncturist will not insert needles into me due to sympathetic overdrive. I don't know how common the technique is, but it has helped me come down to 1/3 of the medication that I had been on.

Can someone explain "pulse pressure?" I have a home BP cuff which reads diastolic, systolic and heart rate, but I'm not familiar with pulse pressure.

many thanks.

Pulse pressure is the difference between the systolic and diastolic numbers. Normal is 30-40, anything less than 20 is NOT normal, unless you have lost a lot of blood or are one of us.

The Systolic is the pressure in the arteries when your heart squeezes and the diastolic is the pressure when it relaxes. A narrow pulse pressure means that the blood is having a hard time moving around and probably a difficult time getting up to your head.

Did you go off the Inderal for the test? No BB and exercise will cause me to have diarrhea too. After strenuous exercise, I'll crash and burn too...crazy HR and BP. Exercise is high on the list of things that stimulate norepinephrine, so you may need to just ride it out.

Cordelia,

Don't ever worry about been doom and gloom, apologies are unnecessary. I don't have any words of wisdom either. I have low systolic, but high diastolic: 103/88, 110/97, 121/105.

I've read that it is indicative of severe dehydration or hypovolemia...or extreme shock and blood-loss. If you aren't bleeding somewhere, I'm guessing its a volume issue. Yeah, less than 20 mm/hg hurts! I guzzle 16-24 ounces of anything and it will get better for a little while (usually till I visit the little girls' room.) I'd probably keep track of it and bring it up with your doc. Most of my docs just shake their heads at my BP and compliment me on my "wonkiness" that day, but they never really DO anything.

Good luck...and keep the liquids up.

I just finished reading the entire article as published and I have questions and concerns. Granted the study size was small, but they found NO autonomic abnormalities during their ANS testing other than tachycardia. They excluded a patient with EDS, citing a link between connective tissue disorders and abnormal heart size. Patients with confounding conditions that were found during the course of exercise were excluded...

It appears as if they were almost looking for the deconditioned who were MISdiagnosed as having POTS. They did mention a smaller heart as a predisposing factor in developing POTS though.

Have any of you EDS-POTSys been accepted into the larger study pool and given the exercise protocol?

Have any of you with abnormal autonomic responses been accepted?

I will probably apply for the protocol since two years of Pilates has not done much to drop my HR or BP and things are wonkier than ever.

I just remember back when I was in awesome shape and still couldn't run down the block...I'll let you know what they say.

Julie,

Can you get in touch with the author of the site or his family doc? There was no contact info that I could find on the site, but there are ways to see who owns it...

Will your rheumatologist take this seriously?

I am so sorry! I wish I could say that I was surprised.

It sounds exactly like my first neurologist appointment, my husband went with me and was just stunned! Don't let that bleepedy-bleep-bleep excuse for a doctor get you down! YOU know your body! I know it is hard to stay strong, but it is the only way that you will ever be able to get any true help. Keep looking for someone who will listen, and look. Rest up and re-gather your strength.

((hug!))

try one of these docs:

Pediatr Res. 2008 Feb;63(2):196-202.

A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome.

Galland BC, Jackson PM, Sayers RM, Taylor BJ.

Department of Women's & Children's Health, University of Otago, Dunedin 9015, New Zealand. barbara.galland@otago.ac.nz

Abstract

This study aimed to define cardiovascular and heart rate variability (HRV) changes following head-up tilt (HUT) in children/adolescents with chronic fatigue syndrome (CFS) in comparison to age- and gender-matched controls. Twenty-six children/adolescents with CFS (11-19 y) and controls underwent 70-degree HUT for a maximum of 30 min, but returned to horizontal earlier at the participant's request with symptoms of orthostatic intolerance (OI) that included lightheadedness. Using electrocardiography and beat-beat finger blood pressure, a positive tilt was defined as OI with 1) neurally mediated hypotension (NMH); bradycardia (HR <75% of baseline), and hypotension [systolic pressure (SysP) drops >25 mm Hg)] or 2) postural orthostatic tachycardia syndrome (POTS); HR increase >30 bpm, or HR >120 bpm (with/without hypotension). Thirteen CFS and five controls exhibited OI generating a sensitivity and specificity for HUT of 50.0% and 80.8%, respectively. POTS without hypotension occurred in seven CFS subjects but no controls. POTS with hypotension and NMH occurred in both. Predominant sympathetic components to HRV on HUT were measured in CFS tilt-positive subjects. In conclusion, CFS subjects were more susceptible to OI than controls, the cardiovascular response predominantly manifest as POTS without hypotension, a response unique to CFS suggesting further investigation is warranted with respect to the pathophysiologic mechanisms involved.

PMID: 18091356

Peace and comfort to you.

(((((((Bella)))))))))

Beware the almonds and dried fruit, they are extremely high in potassium and will cause you to flush the sodium from your system...good for hypertension, not good for POTS.

About the salads, I am going to an Oriental Medicine doc and he believes that diet is just as powerful as medication. For me, salads and raw vegetables are not broken down properly and they clog my system. They need to be cooked or steamed to break down the plant cell walls so that I can digest them. I didn't really believe it till I tried it; I don't have the constipation issues now that I used to have. Fruits don't have to be cooked, but it helps.

Wow - I found your posts really interesting. My daughter who is 14 months old is severly allergic to milk as well. Though I am a HOPELESS cook and even struggle with recpie ideas. It would be fantastic if you are compiling them for your son if you would share them with us as well.

I am thinking alot of food intolerances are wrapped up with my POTS so I would really appreciate any food ideas you have.

Hi I PM-ed you about milk-free cooking.

It sounds interesting, but I wonder where the author got his information from? I would feel better if there is some proof to what is being said.

Granted, this naturopath could be right, but at this moment, I'm skeptical. Maybe if there were studies done that corroborate the findings? Maybe there are such studies, but they were not listed on the post?

There are actually a lot of medical studies that back some of this up. Most of the studies implicate BRAIN histamine and its response to dehydration as a signaling neurotransmitter. In the studies I found on PubMed, taking H1 and H2 blockers eliminates any "over-response" by mast cells and then norepinephrine takes over to release ADH, etc. However, mast cell degranulation is implicated in some studies in heat-stroke/dehydration. Hypovolemia and dehydration are not the same though; hypovolemia means you have too little blood, and dehydration is too little plasma/body water but the blood parts (WBC, RBC, and electrolytes) are concentrated. The histamine release seems to be related to osmoreceptors (blood thickness) in the brain, and they would sense concentration, but not hypovolemia.

Am J Physiol Endocrinol Metab. 2000 Dec;279(6):E1305-10.

Dehydration-induced vasopressin secretion in humans: involvement of the histaminergic system.

Kjaer A, Knigge U, J?rgensen H, Warberg J.

Department of Medical Physiology, Division of Endocrinology and Metabolism, The Panum Institute, Rigshospitalet, University of Copenhagen, DK-2200 Copenhagen N, Denmark. kjaer@mfi.ku.dk

Abstract

In rats, the hypothalamic neurotransmitter histamine participates in regulation of vasopressin secretion and seems to be of physiological importance, because blockade of the histaminergic system reduces dehydration-induced vasopressin secretion. We investigated whether histamine is also involved in regulation of vasopressin secretion during dehydration in humans. We found that 40 h of dehydration gradually increased plasma osmolality by 10 mosmol/kg and induced a fourfold increase in vasopressin levels. Pretreatment with the H(2)-receptor antagonists cimetidine or ranitidine significantly reduced the dehydration-induced increase in vasopressin levels approximately 40% after 34 and 37 h of dehydration, whereas this was not the case with the H(1)-receptor antagonist mepyramine. Dehydration reduced aldosterone secretion by approximately 50%. This effect of dehydration was reduced by both H(1)- and H(2)-receptor blockade after 16 and/or 34 h of dehydration. We conclude that vasopressin secretion in response to dehydration in humans is under the regulatory influence of histamine and that the effect seems to be mediated via H(2)-receptors. In addition, the regulation of aldosterone secretion during dehydration also seems to involve the histaminergic system via H(1) and H(2) receptors.

PMID: 11093918