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POTS & pulse pressure diagram

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(Credit: Primer on the Autonomic Nervous System) Shows the physical dynamic that occurs orthostatically; people with POTS are unable to properly compensate for this shift.

Heartbeat

More About Pulse Pressure…The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there.

23andMe LiveWello App [UPDATED]

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23andMeYou can find all of my related posts here.

IMPORTANT UPDATE

There has been yet another HUGE update to the Livewello Gene App.

This time, VERY IMPORTANT FEATURES have been added. Your Livewello Gene Report now contains useful links which can help you with understanding your 23andMe Results—>

  • Links in the “Gene & Variation” column now take you to Pubmed articles!!!
  • From your Livewello Gene Report, you can now share PubMed Articles relating to a particular SNP, in FaceBook conversations or in a Group. Just click on the SNP in the “Gene Variations” column of your Livewello Report.
  • Clicking links in the “Your Allele” column take you BACK to YOUR 23andMe Raw Data Browser.

Nancy at LiveWello contacted me about this through my blog, and I have tried it out and think its worth recommending. Below Nancy’s note is my information and links to my reports generated through the LiveWello 23andMe Gene App, Genetic Genie, MTHFRsupport and Promethease so you can see how they compare.


Hi Shae,
I’d like to inform you about Livewello’s 23andMe Gene App: https://liveWello.com/23andMe It was developed by Dr Iwegbue, himself the father of a child on the (Autism) Spectrum. We’d like you to add it as a resource on your Blog.

For people who have received their 23andMe test results, the LiveWello 23andMe App will run your 23andMe Raw Data through our Variance Report Software, giving you over 300 Gene SNPs on the: Transulfuration Pathway, Methylation Pathway, Liver Detox Pathways, Mitochondrial function, Thryoid disease, Alzheimer’s risk, Cell Membrane integrity, IgG, IgA, IgE Immune Systems, Clotting Factors, susceptibility to gut issues and much more…It costs only $19.95 for each Raw Data file and will generate your report in less than 5 minutes.
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Your report comes with active rsiDs & Risk Alleles. When you click on them, it takes you directly to SNPedia, NCBI and PubMed to research and read more about your SNPs/Risk Alleles.

We’re always adding more SNPs. Whenever LiveWello makes updates to their 23andme App, the changes are instantly reflected on all existing reports. This gives you the power to access more than 900,000 SNPs on your raw data so that as new correlations are made with diseases/symptoms and specific genes, you can figure out if you have the risk allele. This means that you will have this tool forever not just when you run the report.

Here is a sample LiveWello 23andMe report with all the 300 SNPs it currently translates (you’ll need to get a free Livewello account to view it- please do not modify):
Shae’s ZebraSoup Report (alternate link below)

If you have any questions please email: support@livewello.com
Our policy is to respond to you quickly and politely in less than 30 minutes during Business hours. We wish you the very best in attaining optimum health for yourself and your Patients.
Always here to help,
Nancy


As I mentioned, I gave this a test drive. My results are posted here (more options to view results linked farther down) so you can see what a report currently looks like. They add to the data as their information databank grows, which is included, so your report will also grow over time.

Once your raw data is converted, you can:
-Share access to it with your Health Village on Livewello
-Post SNPs directly to your FaceBook groups.
-Save it to your Documents Library (2GB free storage)
-View your report on your free iPhone/iPad Livewello App
-Discuss results with your Practitioner in a Comment thread
-Download your report to your desktop as a PDF
-Send by email
-Print your report
-Follow LiveWello on Facebook

They also have other features for tracking your health data, and you can store and share documents. You can upload and store,various types of documents and share them (or keep them private). You can allow commenting. You can also upload by emailing documents to your LiveWello documents account. You also get a journal, to which you can email entries if you wish. LiveWello has some nice features beyond the 23andMe app.

COMPARISON OF VARIOUS 23andMe RAW DATA ANALYSIS REPORTS

I have been asked if it is worth spending twenty dollars on this when there other resources out there for less. My personal opinion is yes. Why? Several reasons. The biggest is that LiveWello is unique in o e aspect: they keep your report and update it with additional information, so your report grows over time. The others don’t offer that. Another reason I suggest this (if you have concerns leading you in this direction in the first place) is that it doesn’t hurt to have a few different sources to compare, and twenty bucks is pretty cheap. Want to see what a few different reports look like?

See screenshots of these reports here.

I uploaded my own results from other apps that analyze raw data from 23andMe to my documents storage folder on LiveWello – please do NOT attempt to modify or regenerate these:

ALTERNATE LINKS TO VIEW MY REPORTS (added 2 Oct 2013) *
You may also view my personal reports using the sharing links below. No account registration is required; however, they are password protected. Enter the word ‘genome’ to view these files. Please do not distribute without written permission.

* If you have a LiveWello account and want to connect through their ‘village’ community, you can find me there as zebra.

LiveWello also has a free iOS app you can download. Access the LiveWello 23andMe App and give it a try. Requires registration and one time payment do $19.95, which I found worth it. There are several other LiveWello apps that come with this.

Other Useful tools in your LiveWello App:
What Else Can Your Livewello App Do? livewello.com/what-does-it-do
Download The Free Livewello Platform IOS App: http://bit.ly/RocPhA
Livewello Emergency Health Card: livewello.com/health-card
Practitioner Directory: livewello.com/practitioner
Livewello’s 23andme App: livewello.com/23andme
Livewello’s 23andme App Tutorial: https://vimeo.com/m/68028593
Tutorial on Sharing your Livewello 23andMe Report: https://vimeo.com/68664792
For The Latest Livewello App News: http://www.facebook.com/livewello
About LiveWello: livewello.com/press

ALSO HELPFUL: STERLING HILL’s EDS SNP LIST
This is a list of SNPs that are potentially related to EDS III (hEDS) including which allele is the ‘risk’ allele fore each and a link to further details for each SNP, in PDF format, 9 pages. (Added 2 Oct 2013) *


You can find all of my posts on this and related topics here.


Pulse Pressure in POTS/Dysautonomia Research Group

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Research Study Invitation

As you may already know, if you are a regular here, I have been writing a series of posts on pulse pressure drops and spikes after discovering that there was virtually NOTHING on the net about this phenomenon as related to Dysautonomia. Since I began the series, I have been in contact with several others who have, like me, experienced pulse pressure drops to as low as 1mmHg along with similar symptoms. I have decided to put forth some personal initiative on the topic, and an instigating an informal research study with the goal of furthering interest in this area. I hope to trigger an actual scientific medical study as a result.

If you are interested in participating AND have BOTH Dysautonomia AND variable pulse pressure (drops and/or spikes) you can request an add here:

http://www.facebook.com/groups/POTSPulsePressure/

The goal of the research group is focused on gathering and comparing our personal data (readings, symptoms, etc) in the hope of assembling enough compelling data to get a doctor/researcher interested in pursuing an actual scientific study on pulse pressure in POTS/Dysautonomia. The group will also offer support for those suffering from this particularly unpleasant and obnoxious phenomenon, for lack of a better word.

If you are not on Facebook and wish to contribute, please get in touch with me. No one’s personal information will be shared outside the group. Any shared data will be anonymized and shared only with medical professionals who are interested in pursuing the study in a more official capacity. You are not obligated to submit data in order to join the group; you may join for your own benefit and support.

UPDATE: shortly, we will also have a new standalone group/community site in addition to the original Facebook group, which will remain in place.

Any data posted in the group may be used in the study, but will only be used anonymously. Each participant will be assigned a number, and no data other than age and basic statistics will be included in patient reports. The group will have an opportunity to review the material before submission.

Heartbeat

More About Pulse Pressure…

The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there. The bare basics that apply to all posts on this topic:

THE FORMULA: Systolic – Diastolic = Pulse Pressure (PP)

When my PP spikes high, my heart rate usually is within a normal range. Regardless of heart rate, a high PP will cause my heart to feel like it is pounding very hard, with great force (not to be confused with speed). The harder it beats, the higher my PP has spiked. When it is super high, say over 60, I can feel it sort of reverberating throughout my body. It is very uncomfortable, and I often experience great discomfort in the chest during these episodes. It often happens supine.

HIGH or WIDE PULSE PRESSURE = LOWER DIASTOLIC = POUNDING HEARTBEAT

Alternately, I am usually standing (sometimes sitting) when my PP drops. The lower it drops, the weaker my heartbeat feels. A super low PP is accompanied by pre-syncope and I have extreme difficulty detecting my own heartbeat. It becomes thready, faint, and seems irregular.

LOW or NARROW PULSE PRESSURE = HIGH DIASTOLIC = SOFT HEARTBEAT

Heartbeat

 

Pulse Pressure: the ignored vital statistic

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I admit from the beginning of this post that pulse pressure monitoring is one of my pet topics, so there is a bit of personal bias here. Having said that, I firmly believe every Dysautonomia patient should be monitoring their pulse pressure in addition to heart rate and blood pressure.

iBP app

What is Pulse Pressure?

Simply put, pulse pressure (pp) is the difference between the upper and lower blood pressure readings, in other words, subtract the diastolic bp from the systolic bp like this:

systolic-diastolic=pulse pressure

A ‘good’ pulse pressure should be about 40 mmHg. Less than 30 mmHg is not so hot. Under 20 mmHg is ‘bad’ and if you get under 10 mmHg, I seriously recommend a trip to the ER. Speaking of which, get emergency help ANYTIME you have concerns about changes in your vitals or symptoms.

* This is a good spot to throw in that old disclaimer that this post (and anything else in this blog) is NOT medical advice and should not be taken as such. This is simply a collection of the observations, opinions and experiences of one Dysautonomia sufferer.

Why Does Pulse Pressure Matter?

That is a complex question, but as pertains to Dysautonomis (POTS in particular), it is important to keep an eye on this oft ignored reading for several reasons. Pulse pressure drops, also called pulse pressure narrowing, is very frequent with POTS, particularly (in my observation) with hyperadrenergeric and/or combination POTS patients. Personally, I experience pp drops under 10 mmHg and have gone as low as 1 mmHg. Not a good thing!

Continue reading

United We Tilt!

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I have a favor to ask you all. PLEASE either do this simple test at home or ask your doc to do it when you go for your next physical exam…I strongly advocate the ‘Poor Man’s Tilt Test’ be a part of every physical exam from school age onward. This would avoid a lot of problems for so many people! If you have access to a bp cuff amd a pencil/pen, you can do this at home. I have instructions on my blog at the link below, and I will gladly help anyone with the process if you need it. Spread the word! Let’s make this a well known standard go-to test, and try to get as many people doing it and asking their doctors to do it as possible! It would seriously mean the world to me if you will do this…for yourself and your loved ones. Help screen for Dysautonomia / POTS (Postural Orthostatic Tachycardia Syndrome)! It has been estimated that as many as 1 in 100 teens may have the condition, so this is truly critical.

The PMTT: http://potsville.wordpress.com/2012/06/10/tilt-this-2/

 

Legions of Lesions (the sequel)

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*SQUEAMISH ALERT*
Do not continue to the photos in the ‘read more’ part of this post if you are squeamish…these photos are graphic and alarming.

This post is about my continuing battle with a horrific cluster of lesions on the back of my neck and upper back, primarily; smaller clusters have been located on my lower back, upper leg, shoulder and upper left arm, sides of neck, and hairline. I’ve had three previously on my face, which thankfully healed without scarring, although a current one located between my eyebrows will likely leave a small scar. For the details and history on this, continue reading, but be warned that there are graphic photos and descriptions which may be upsetting.

If you’ve chosen not to read farther, please know I continue my battle diligently and bravely, though it is one of the hardest I’ve ever faced. At times, I’ve nearly quit…I’ve worked hard at keeping on when there is no light at the end of the tunnel, even when the darkness is so enveloping you cannot fathom the tunnel, itself. I suppose that is faith, moxy, courage…stubbornness…willpower…stupidity…rolled into one. Bravery is not the lack of fear, after all; it is the willingness to walk headlong into the thing you fear most, despite that fact. I have been terrified, frankly. I’m still pretty scared, although I’ve finally seen some improvement that gives me hope and a glimmer of what may be a light at the end of the tunnel (hopefully it isn’t an oncoming train). I am a person well acquainted with high levels of pain. I don’t flinch easily from pain. This has left me sobbing like a lost child, shaking with a fear I can’t put into words, and don’t want to. But I am still here.

On a particularly bad day, I had a less than optimal exchange with someone who accused me of having a death wish. On that day, perhaps part of me did, but the truth is, I know no one who works harder at seeing the bright side than I do. I have many faults, but one of my strengths is optimism. And gratitude, that is another. I take little for granted. I find something in EVERY day, no matter how hard, painful, scary, demoralizing…I find something to take a it of joy in. Every day. So you can never judge a person by a mood or a bad day or an exchange when that person may have hit their limit…it is never the summation of who they are.

But I digress. It’s a hobby of mine.

If you’d like to read the nuts and bolts of the battle, carry on…if you stop here, I completely respect that. This isn’t easy to see. It’s worse to live.

Continue reading

Morgellons Skin Lesions

071806.11morg lesions armMay 31-6May 31-5May 31-4 - Copy (3)May 31-3
071806.12May 31-2May 31-1left forearmleft elbow top 2left elbow scarred
left elbow markedJune 29 - 7June 29 - 6June 29 - 5June 29 - 4June 29 - 3
June 29 - 2June 29 - 1June 25 - 4June 24-6June 24-2 - CopyJune 24-1

WARNING: Not for the squeamish. These photos are from NutraSilver.com/morgellons flickr gallery. The back of my neck and shoulder blades are covered in the lesions, and have been for the better part of the last year. I’ve also had a few on my hands and legs and scalp. I cannot express how viscous this is…this ‘Morgellons’ or whatever it is. I have ordered the NutraSilver treatment out of sheer desperation. For those interested (I know a few others who are suffering from the same kind of thing) I will post my progress with it. I should know within a month, perhaps sooner, if it is working.

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A Not-To-Do List for Caregivers of the Chronically Ill | Psychology Today

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A Not-To-Do List for Caregivers of the Chronically Ill | Psychology Today:
Toni Bernhard hits on a much neglected topic with this EXCELLENT piece on the life of the caregiver…if you know someone who is chronically ill or disabled, chances are you also know their caregiver…and chances are you may not have thought (really thought) about what that role in life means, or the impact it can have. This is truly a must-read.

What if patients took charge of their medical records?

Shae:

Did you know….

Originally posted on Doctor Data:

patients track own medical records

Click on image to enlarge

A patient steps into your office, you ask him how he’s recovering from recent surgery. He starts giving you all the details, at least those he can remember.  Here’s the usual dilemma: do you trust the information your patient shares? Is it reliable enough to use for follow-up care?

As doctors, it’s definitely a problem to trust a patient’s subjective memory, but in many cases, this is the only data you have, sometimes you don’t even have access to a patient’s relevant medical records.

A recent infographic shows, 50% of the data primary care physicians send out to specialists gets lost. In addition, in about 75% of post admission visits, doctors don’t have access to the patient’s hospitalization report. Even though electronic health records should be helping the flow of information, lag times between medical centers and out-of-network care can slow down the relay of…

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Scaling pain; no comparison required

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I have been wanting to write this post for ages. It’s a touchy subject, and the effort will cost me most of a day’s spoons…but it is also an important topic with many complex layers. I am referring to pain perception, to include how we rate our own pain (whether in a clinical setting using the 1-10 pain scale or in our personal lives using even more subjective criteria) and how we tend to assess pain in others. I will also touch on comparison; what it means, how it affects us, and more productive ways to approach it, IMHO.
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This chart is pretty good for giving a very subjective subject a slightly more quantifiable approach. It isn’t perfect, but what is? I can personally attest that ‘bad back pain‘ as in level 6 *can* hit a 10 (or what I call a Spinal Tap 11) on the pain scale; I’ve been there. I do agree that a true 10 is likely an extremely rare experience, and I also believe many folks think they’ve hit a 10 when they’ve actually probably only hit 8 or 9, if that. This is not criticism or judgment; a person’s pain is their own to judge. We each have a different pain threshold, and we view our pain levels through the window of our past sensory experiences. It’s human nature.

Before my greatest pain experience to date, my judgement was entirely different of my own pain levels. What tells me I truly hit that 10 (or Spinal Tap 11) is this simple fact: I crossed The Line, the one where life becomes unbearable and cannot be endured another ten seconds. We all have (I would think) wondered before where our personal line would be if we were captured and tortured, let’s say; what would our breaking point really be? How much could we endure, if it really came down to the nitty gritty? Most people never have to face that. I had to stare it in the eye, and I am sorry I did. It changes you. That level of pain, if survived, will give you PTSD. You’ll have flashbacks that make you break out in a cold sweat.

But my experience does not take away from anyone else’s experience. Pain is pain, and no one has the right to critique the subjective experience of another person’s pain. Yes, we all have bad days or moments where we roll our eyes and think, “are they really complaining about something as trivial as that?” This is also human nature, and it’s okay to feel like that now and then. What isn’t okay is giving voice to that inner grumpy moment at the expense of another person.

And yes, there are a few instances where a person does whine and moan about things that seem trivial to us. Whether that is true or not isn’t relevant; we are entitled to think and feel what we each do, but that doesn’t give anyone license to be hurtful or inconsiderate of other people.

Consider this: if a person had so far only experienced paper cuts drizzled with lemon juice as their worst pain experience, then on their experiential pain scale, that’s their personal 10.

We can look at a chart like this one, and try to objectify pain so that we can describe it more accurately to doctors, but the reality is that no chart will truly do the trick. And whoever you tell your pain score to will hear it through the filter of their own pain experience. So it is ultimately a fairly futile exercise…I absolutely loathe ‘scoring’ pain levels because I know the subjectivity of pain is inescapable. But so is the reality that we need some way to communicate about pain levels, and until someone comes up with a clever pain sensing gadget (that also senses pain thresholds), this is what we are stuck with.

It isn’t a competition, either.

There are people who have had worse pain than me, I’m sure (unthinkable in my world, but that doesn’t make it untrue) and there are people whose pain has never approached my ‘average day’ pain. Does that mean they are not entitled to b*+ch about a broken arm or a bad flu? Of course not. It doesn’t matter whose pain has been worse; everyone has pain, no one escapes it, and each person is equally entitled to the validity of their experience.

There is no measuring stick that says, “You must be at least this high to ride this ride.”

Go To Your Happy Place – Ripples in the Pond

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Recently, two of my Happy moments were featured at Happier,
and that did make me smile. Two tiny pebbles in the happy pond!


What is Happier? It’s this nifty little app I found a few weeks ago, and quickly became addicted! A social site/app but without the drama, focused on optimism and paying forward those small (and big) blessings in life. I’ve found that, although I’ve long been in the habit of thinking about what I am grateful for every day, putting those bits of happiness out there in a more concrete form makes that optimism concrete in a way that my thoughts, alone, just can’t match. Add in the bonus of spreading happy thoughts like a good virus, and this seems like a no-brainier to this Zebra!

I find it helps me a great deal to cope with the roller coaster, and keeps me more centered on the positive. It’s also nice just to go there and read the happy posts of others, for a bit of a lift.

I invited a few friends to share in my Happier experience, and Lisa over at Mom Blogger Buzz was one of them. She wrote a fantastic blog post about the app. Check out her sweet summation:

Go To Your Happy Place Using the @Happier #App | Mom Blogger Buzz

Thanks to Lisa for sharing ‘Happier‘ to a wider audience, and for making more ripples in the happy pond! Check out her blog post on this nifty app at the link, above.

I use Happier frequently, sometimes several times a day. See your happy moments spread like ripples in a pond…all you need is a metaphorical pebble; enter Happier!

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Happier is currently available on the web and iOS, and is coming soon to Android. I like to use my Studio app to create little graphics to illustrate some of my happy moments…so if you enjoy creating, you may really like the Studio app, too!

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