Helping women with chronic illnesses

Category — Dysautonomia

Sick On Top Of Sick

Being chronically ill has often been compared to riding a roller coaster ride. Things are never boring.

Being sick on top of sick is a situation many people can relate to. I decided it would be an appropriate topic to write about today, in light of how I have been feeling for about a week now.

Some days are up.

Some days are down.

Some days are downright dizzying!

Anyone who is chronically ill knows that when you get sick with some sort of bacterial or viral infection on top of the chronic illness(es) you already have, it makes a challenging situation even more so.

I have been in a flare-up of fibromyalgia for the last couple of weeks. The change in weather did its thing, as it always does, and my muscles were not happy. Then, I got some sort of bug that includes muscle pain along with a very sore throat and a wicked headache. The fatigue was so severe that I slept the better part of the day on Monday and Tuesday. Yesterday, I started feeling human again.

Anyone who knows me at all knows that getting sidelined during Endometriosis Awareness Month was very frustrating. However, my body made it very clear that writing blog posts was not an option. Those of you who are connected with me on Facebook saw me pop up occasionally there. Posting comments here and there on Facebook is about all I’ve had energy to do the last few days.

In closing, while I have not been able to accomplish everything I had hoped to accomplish by Day 18 of Endometriosis Awareness Month, that is (frankly) no big surprise. The ideas I have are always more numerous than what I can implement but that’s alright. Endometriosis awareness should occur year-round. While I recognize that March does provide some addition visibility and exposure for the topic of endometriosis, and while I try my best to take advantage of that, I fully realize that the work must occur all year long.


You have signed the endometriosis petition, right? You are aware that ANYONE who supports endometriosis awareness can sign it, right? Several bloggers have posted the petition badge on their blogs. Several other people have posted the link to the petition on their Facebook walls and this has resulted in signatures from their friends and family getting added to the list.

PLEASE… share this petition as widely as possible. We’ve already used it as a tool to force the media to correct inaccuracies about endometriosis in a syndicated newspaper column:

Endometriosis Advocacy and the Media (Re-post)

Think what else we can do with it! Click above to access the petition (and its link). Also, anyone willing to select “StumbleIt” and/or “TweetThis” at the bottom of this post and others like it will help spread the word about endometriosis awareness. If you are registered on StumbleUpon, please consider writing a review of this post or of the petition itself. I added the petition to StumbleUpon and it has gotten a fair number of views. Here is the link to the StumbleUpon version of the same petition you can access with the blue badge above:

Create Endometriosis Awareness & Understanding

Thank you.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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March 18, 2010   10 Comments

Teen With Suspected Endometriosis

Recently, I published a post regarding a 13 year old with suspected endometriosis. There was a warm outpouring of support from readers to her. Since it is Endometriosis Awareness Month and since so very many endometriosis patients’ symptoms start at young ages, I thought it would be well worth republishing the post and the many thoughtful, detailed, supportive comments that readers posted to the teen in the following post.

Please be sure to read the comments. Even if you saw the post when it was originally published, you may not have seen all of the follow-up comments that followed.

Post on teen with suspected endometriosis:

Article on teen with suspected endometriosis and the numerous thoughtful comments posted to it by readers

It is wonderful to see an outpouring of support in a situation like this. Together, chronic illness patients (regardless of their specific diagnosis) can band together and support each other. Thank you to everyone who took the time to share their supportive and thoughtful words with this 13 year old who is in so much pain.

There is hope and there is support. There are many people who care. You are not alone.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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March 5, 2010   21 Comments

Health Reform And Gender Discrimination

Yesterday, I watched the bipartisan meeting on health reform. The summit was fascinating to me for many reasons but there was a highlight, for me, in the form of remarks made by Rep. Louise Slaughter. She really stood up for women’s health!

Rep. Louise Slaughter

She boldly spoke up for women at the 2/25/2010 health summit

In my mind, her comments can be appreciated by all women and especially any any female patient who has lived with the effects of gender discrimination in relation to medical research (i.e. lack of research on women or lack of investigating illnesses that affect just women) or cost of healthcare that is tied to gender. I won’t even get into a discussion of how common it is for women’s symptoms to be dismissed when similar symptoms would be taken more seriously for males (i.e. heart disease). The point is that Rep. Louise Slaughter stood up for all women and I was just beyond thrilled that she took the opportunity presented by the summit to address these issues.

My thanks to Diana of the Somebody Heal Me blog for posting this video. When I clicked on the link she posted (to the video below), it took me to the Odd Time Signatures site.

Yesterday, I was so thrilled to hear what Rep. Louise Slaughter said that I resolved myself to scour the Internet today to find a video clip of her at yesterday’s summit. Again, Rep. Slaughter wasn’t just speaking up about health reform.

She was speaking up for female patients everywhere and she was shining light on the fact that medical research studies were done almost exclusively on white males up until a startlingly short time ago, relatively speaking. I believe that any patient with an illness that affects women can appreciate the way Rep. Louise Slaughter spoke up for ALL female patients.

As a patient with numerous illnesses that either affect women alone or that affect more women than men, I was absolutely ecstatic to hear Rep. Louise Slaughter articulate what too few people are aware of… and to hear her do so in such a public forum!

There IS gender discrimination not only in the area of medical research but in the very cost of health insurance itself for women vs. men. Before I had even had a chance to locate a video of Rep. Louise Slaughter at yesterday’s summit, I came across a link from Diana that led me to Odd Time Signatures site.

(Video run time 12 minutes and 59 seconds):

Did you miss the summit? I will warn you up front. It’s long. However, you can scroll through the link below and watch parts of it if you choose to. (This video was just a snippet from the summit).

The link below has the summit, in its entirety, broken down into five video parts. You can watch some or all of it at the link below:

Bipartisan Health Care Meeting

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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February 26, 2010   2 Comments

Reid Says Reconciliation Likely On Health Reform

(Photo credit – Getty)

I have written previously regarding healthcare and wanted to take a moment here to post an update on the current situation, for those of you who may not be aware of the status of things at this time.

Rather than re-invent the wheel, I will cite the following post from:

S E N A T U S: Daily Coverage of the United States Senate

See “About Senatus” (taken directly from that site):

Providing daily, non-partisan coverage of the U.S. Senate and the elections which determine its members. This is a private-citizen effort and is in no way affiliated with the federal government.

(Photo credit – Associated Press)

See the following post on the Senatus blog:

Reid Says Reconciliation Likely On Health Reform

According to various news reports, 20 senators have signed so far, calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation,” which only needs a simple majority in the Senate. If your Senator is listed as “unknown” on the list below, please consider taking a moment to email or call him/her requesting he/she join the 20 Senators who have already called on Majority Leader Harry Reid, as per above:

Name – ST – Status:

  • Sen. Daniel Akaka – HI – Unknown
  • Sen. Max Baucus – MT – Unknown
  • Sen. Evan Bayh – IN – Unknown
  • Sen. Mark Begich – AK – Unknown
  • Sen. Michael Bennet – CO – Supporter
  • Sen. Jeff Bingaman – NM – Unknown
  • Sen. Barbara Boxer – CA – Supporter
  • Sen. Sherrod Brown – OH – Supporter
  • Sen. Roland Burris – IL – Supporter
  • Sen. Robert Byrd – WV – Unknown
  • Sen. Maria Cantwell – WA – Unknown
  • Sen. Benjamin Cardin – MD – Unknown
  • Sen. Thomas Carper – DE – Unknown
  • Sen. Robert Casey – PA – Unknown
  • Sen. Kent Conrad – ND – Unknown
  • Sen. Christopher Dodd – CT – Unknown
  • Sen. Byron Dorgan – ND – Unknown
  • Sen. Richard Durbin – IL – Unknown
  • Sen. Russell Feingold – WI – Unknown
  • Sen. Dianne Feinstein – CA – Supporter
  • Sen. Al Franken – MN – Supporter
  • Sen. Kirsten Gillibrand – NY – Supporter
  • Sen. Kay Hagan – NC – Unknown
  • Sen. Tom Harkin – IA – Unknown
  • Sen. Daniel Inouye – HI – Unknown
  • Sen. Tim Johnson – SD – Unknown
  • Sen. Ted Kaufman – DE – Unknown
  • Sen. John Kerry – MA – Supporter
  • Sen. Amy Klobuchar – MN – Unknown
  • Sen. Herb Kohl – WI – Unknown
  • Sen. Mary Landrieu – LA – Unknown
  • Sen. Frank Lautenberg – NJ – Supporter
  • Sen. Patrick Leahy – VT – Supporter
  • Sen. Carl Levin – MI – Unknown
  • Sen. Blanche Lincoln – AR – Unknown
  • Sen. Claire McCaskill – MO – Unknown
  • Sen. Robert Menendez – NJ – Supporter
  • Sen. Jeff Merkley – OR – Supporter
  • Sen. Barbara Mikulski – MD – Supporter
  • Sen. Patty Murray – WA -Unknown
  • Sen. Bill Nelson – FL – Unknown
  • Sen. Ben Nelson – NE – Unknown
  • Sen. Mark Pryor – AR – Unknown
  • Sen. Jack Reed – RI – Supporter
  • Sen. Harry Reid – NV – Unknown
  • Sen. John Rockefeller – WV – Unknown
  • Sen. Bernie Sanders – VT – Supporter
  • Sen. Charles Schumer – NY – Supporter
  • Sen. Jeanne Shaheen – NH – Supporter
  • Sen. Arlen Specter – PA – Supporter
  • Sen. Debbie Stabenow – MI – Unknown
  • Sen. Jon Tester – MT – Unknown
  • Sen. Mark Udall – CO – Unknown
  • Sen. Tom Udall – NM – Supporter
  • Sen. Mark Warner – VA – Unknown
  • Sen. James Webb – VA – Unknown
  • Sen. Sheldon Whitehouse – RI – Supporter
  • Sen. Ron Wyden – OR – Unknown

    This isn’t about politics. At least it’s not for me. For some people, the issue of healthcare is a political one. For me, this is about people, about the basic human right of people to be able to obtain access to basic healthcare to meet their needs. Without reform to the very broken system currently in place in the U.S., the health insurance companies will continue to price gouge customers while providing less and less coverage and issuing more and more rejections for various services, tests, procedures, and surgeries.

    Having had my insurance reject valid claims and having filed an appeal, having had my appeal rejected and then having filed another appeal and having won… I know that insurance companies are excellent at obstructing patients’ paths to needed care, superb at hindering patients’ ability to access care that IS covered as per their contract, and masters at rejecting claims that are completely valid (in the presumed hope that patients will give up and not file appeals, thus resulting in the patient going without the needed care or paying out of pocket for it while the insurance pays nothing for it).

    These practices must not be allowed to continue. A public option will finally force competition so that health insurance companies cannot continue to bully patients the way they have become accustomed to. People who are fortunate enough to have never been seriously ill may not realize just how little the average health insurance company actually covers these days.

    ANYONE can get sick or injured and can quickly discover just how dysfunctional the current system is. No one is immune to the risk of suddenly discovering what so many people already know… that the health insurance system in the U.S. is profoundly flawed, that those lucky enough to have the flawed coverage offered by a typical health insurance company may at some point discover just how little their health insurance premiums are worth, that far too many people cannot afford access to health insurance at all, and that action must be taken to reform this system as soon as possible.

    The longer this mess drags on, the more difficult it becomes to fix and the more people suffer. After decades of talk about reforming the broken system, steps in the right direction are now visible. Every voice matters. I have been busy writing letters to Senators (not just asking for them to support the letter to House Majority Leader Harry Reid but thanking my Senators once both had signed on, to let them know I appreciate them standing up for people like me).

    If you are like me, you’re chronically ill and you are all-too-familiar with how very expensive it can be (even WITH insurance) to obtain needed healthcare.

    I am not naive enough to think that everyone reading this agrees with my perspective and I’m sure that some people reading this don’t. I am writing this post because I am passionate about healthcare access for all, I am sick to death of learning about example after example of health insurance companies making record, windfall profits while patients suffer without care or with insufficient care to meet their needs, and I am bone tired of the decades of TALK about fixing this problem without ACTION to make it happen.

    While I am fully aware that not everyone is in agreement on how to best go about addressing the numerous problems with the healthcare system as it currently exists, the stakes are too high for me not to post this plea for people to contact the Senators marked “unknown” above and request that they become supporters of calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation”.

    Healthcare reform has been discussed for decades. I believe there will NEVER be a time when everyone agrees on how to proceed. This matter is far too complex and is attached to far too many special interest groups for there EVER to be a time when everyone will agree.

    As a chronically ill patient who almost lost my house not once… not twice… but three times due to out of pocket medical bills WITH insurance, I have witnessed firsthand how broken the current system is. Since I write a blog about chronic illness topics, I cannot stand by and watch the events unfolding without sharing my perspective.

    I don’t ask everyone to agree with me but I do ask everyone reading this to understand that I know from personal experience just how severely the currently system is stacked against so many. I have friends who have no health insurance at all. This saddens me.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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  • February 21, 2010   4 Comments

    Dysautonomia Series Re-post

    Here is a Dysautonomia Information Network trailer for their documentary, “Changes: Living with Postural Orthostatic Tachycardia Syndrome:

    My dysautonomia series has been one of the most highly visited groups of posts here. So, I’ve decided to re-post it. I am unaware of whether endometriosis and dysautonomia are considered by medical science to be co-existing conditions. What I do know is that I have encountered many women who have both endometriosis and some form of dysautonomia.

    There are many types of dysautonomia (i.e. postural orthostatic tachycardia syndrome or “POTS”, vasovagal syncope, and neurocardiogenic syncope… to name a few). The video above pertains to postural orthostatic tachycardia syndrome (POTS), which again, is just one form of dysautonomia.


    It is amazing to me how many people have reached my blog while searching for dysautonomia information. It really makes me wonder how many people have it! Generally speaking, there are people reaching my blog daily by searching for information on dysautonomia, using a variety of search phrases. I originally posted the series on dysautonomia back in August (2009). It is unusual for blog posts that are four months old to be getting daily traffic. It truly makes me wonder how many people are affected by dysautonomia.

    Series Re-post:

    The easiest way to view the dysautonomia series is to click here:

    The ‘Chronic Healing’ Dysautonomia Series

    This link will route you to the fifth post. It links back to the four posts that preceded it.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    December 17, 2009   8 Comments

    Scam Busters

    This post is a partial reprint of an article I read on The Canary Report.

    While the full post there was more detailed and got into specifics involving claims made by companies targeting multiple chemical sensitivity (MCS) patients, for the purposes of this post I have decided to focus on the ten warning signs of a scam, as compiled by Lourdes Salvador and Linda Sepp, and as previously published HERE.

    This list, in my opinion, is applicable to nearly any chronic illness patient because the tips for spotting scams listed here are so universally used. This fantastic list is far more concise than I could have written. Yet it captured something I have been wanting to blog about for some time. Longtime readers know that I have blogged about scams and false cures before. However, this list nicely sums up what you, as a chronically ill patient, can be on the lookout for.

    Reprinted with permission from:

    Lourdes Salvador of MCS America
    Linda Sepp, a contributor for The Canary Report


    Ten Warning Signs of a Scam:

    1. The Promise Of A Quick And Easy Cure

    2. Presence Unproven Patient Testimonials & Emotional Appeals Instead Of Science

    3. Claims To Cure Many Ailments Which Have No Cure In Medical Science

    4. It’s Not Sold In Stores

    5. It Has Undisclosed Ingredients Or Content

    6. You Have To Keep At It To Get Results

    7. It Doesn’t Work Because You Did It Wrong

    8. Science Hasn’t Even Bothered To Discredit It (No Threat To Pharmaceutical Sales)

    9. The Seller Lacks A Medical Degree Or Similar Qualification

    10. It’s Too Good To Be True

    Copyrighted © 2009 MCS America


    I am very grateful to Susie Collins for posting about this topic and to Linda Sepp and Lourdes Salvador for writing about this very important topic!

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    December 5, 2009   11 Comments


    Meet Emily:


    When I began blogging in June 2008, I found a powerful video and contacted Emily (who had posted it). Those of you who read my previous blog, “Jeanne’s Endo Blog”, may recall seeing the video posted in its sidebar. Emily created it and graciously agreed to guest blog here about it. With 2,727 views on YouTube, this video is obviously resonating with many people. Emily has fibromyalgia and ME/CFS but I believe that just about anyone dealing with chronic illness/chronic pain can relate to this video. I appreciate her taking the time to write about how this video came to be.

    Emily’s “project”… Behind the video:

    Hi. Some of you may know me as caiquecrazy from Jeanne’s Endo Blog. Others may know me as the user booknhorsefreak, from YouTube. Two years ago, I published a slideshow on YouTube titled Don’t Judge – The Saga of Chronic Pain. It was a little pet project I put together one day as I was sitting home, reading a fibromyalgia/chronic pain support group site, and feeling increasingly sorry for myself. I was at a low point in my life – I was feeling desperate, like my life was slipping away and I was being held captive by something I had no control over – chronic, debilitating pain.

    I had found some letters that were titled ‘Letters to Normals’ that outlined the rage, the pain, the rejection, and the frustration that people who suffered from chronic pain had written in an effort to explain their situations to the ‘normals’ – the healthy ones. I sat for hours sifting through notes and letters, crying in relief that someone else got it. That the person who had put pen to paper actually understood my point of view. This is what brought around the idea of the video.


    I have a background working with horses. Before the pain came to be a constant part of my life, horses were my home. I worked on a ranch in exchange for riding lessons, and took refuge in their strength. I am small in stature, and being able to work in unison with an animal that could easily overpower me taught me lessons in strength, emotion, steadfastness, and partnership. When at first I began to experience pain, I pushed through and continued to ride my beloved equines.

    However, I began to lose my ability to ride safely – my balance became off, my pain threshold lowered, and I no longer had the strength to boost myself into the saddle. After a while, I simply stepped away from horses – not being able to ride was like tearing my heart out. I learned to watch on the sidelines and observe the body language of horses – it thrilled me to watch them in action, and I learned to pick up on the small things that riders generally don’t pay attention to. I was able to float into a dreamland of watching and waiting, fueled by my desire to one day incorporate horses into my life, whatever the price.


    As I made this video, I was using an electric scooter to get around my school campus, because my manual wheelchair was too hard to maneuver with my failing rotator cuffs. I was going to the doctors religiously, and they had me hooked up to a constant tens unit in an effort to help relax my muscles and relieve some of the pain. I isolated myself quite effectively from the normal crowd, and withdrew into my world that was full of books, daydreams, and computers. I became increasingly depressed and frustrated with my situation as I silently celebrated my 6th year of constant chronic pain. At the time, I was only 18 years old.


    Despite not having worked with horses for about 3 years, they still galloped across my dreams and stamped their way into my heart. They were a sort of muse for me, every creative piece I wrote or dreamed was centered around something equine. I often wished they could gallop away with my fears, and replace my emotions with joy and peace. When I sat down to create this video, I wasn’t trying to be creative or even symbolic – I was trying to put into words the thoughts that were going around my head.


    I made a list of words that I use on a regular basis to describe my condition. Suffering, pain, sadness, despair, loneliness, anger, hopelessness, defeat, broken, lost, anguish. I melded these words into silent riders, situated on horses – words to be taken away and carried into the atmosphere, never to be absorbed by me again. Through my tears while making this video, I derived a mission statement. I boldly stated that ‘I will not be defined by my pain’. From there – the video took flight.

    I made a rider crafted out of the word freedom, and placed on that on a cantering horse. Following that rider are images of wild herds running free – the best site in the world, the site that never ceases to soothe my soul. The rest of the images are riderless – they need no riders to saddle them with the weight of the world. They are free.


    I set this all to a song called “Wild Horses” by Natasha Bedingfield.

    The lyrics are well suited to the video, saying:

    “I see the girl I wanna be
    Riding bare back, care free along the shore
    If only that someone was me
    Jumping head first headlong without a thought
    To act and damn the consequence
    How I wish it could be that easy
    But fear surrounds me like a fence
    I wanna break free”

    [Editor’s Note: See this link for complete lyrics to Wild Horses by Natasha Bedingfield].

    I hastily submitted the video to YouTube before I lost my cool and backed out. It’s been up ever since, and for the past 2 years I have been receiving thank you notes from various viewers, thanking me for putting into words and pictures what they could not begin to explain.

    A silly little imaginative whim in my mind formed into an outlet that helped me bridge some ties to the chronic pain community.

    Emily recently traveled to Nicaragua

    Since that video, much has changed. Yes, I do still suffer from pain. Yes, I do have restrictions and limitations on my abilities. But I don’t let it stop me. I’ve stopped using my wheelchair and scooter – they branded me more then I could ever want. Instead of staying home to bury myself in another book, I got involved in the community. I push myself to my limits on a regular basis, and surprise myself when I sometimes surpass what I believe even I was capable of. Recently I got back from a 10 day mission trip in the heart of Nicaragua. I hiked miles around a volcanic crater; something that if you had told me I would do 2 years ago, I would have laughed. Sometimes, I go and re-visit the pictures, because I can’t believe it actually happened. I paid dearly for that hike – but I refused to miss out on a once in a lifetime experience. I chose to live life, and happily take the consequences that came with it. As a result, I have memories that even on the most pain filled day, I can look back on and remind myself of what I accomplished.

    Emily literally climbed this mountain…………

    I hope you enjoyed the video. I honestly can’t say I enjoy it – it reminds me too much of what I once was, and how low that time of my life was. However, it also brings me comfort – whenever I receive a ‘thank you’ letter from an anonymous reader, letting me know that my silly little pet project helped them, it brings a smile to my face.

    I’m glad I can provide words to others, the same words that for so long I attempted to elude. Now I embrace those words with open arms, and I set them free.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    November 21, 2009   13 Comments

    Dysautonomia? Part 5

    This is the final (for now anyway!) installment in my series on dysautonomia. I have learned a great deal in the last few weeks from some very thoughtful, caring women who have dealt with their own dysautonomia (or suspected dysautonomia). Read on for more details about my personal experience plus links to women who can lead you to additional resources.

    If you haven’t yet read my previous posts Dysautonomia? Parts 1-4, please do so because this post won’t make much sense if you haven’t read them first:

    Dysautonomia? Part 1
    Dysautonomia? Part 2
    Dysautonomia? Part 3
    Dysautonomia? Part 4

    You can link to previous parts of the dysautonomia series if you have not yet read them, have missed a part, or simply want to refresh your memory.

    Part 4 left off with me having seen my primary care physician again and her referring me to the cardiologist, expecting that he’d be ordering a tilt table test to rule out postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia.


    Tilt table test

    More information on dysautonomia:

    Interestingly, in the same time frame that several people approached me via twitter with information on various forms of dysautonomia… I happened to come across this detailed, helpful post on Endo en Vogue about it: Cardiology and Fatigue: Dysautonomia. (If you haven’t seen this post, I highly recommend it)!

    Suddenly it seemed everywhere I turned was another person with information on some form of dysautonomia.

    Endo_en_vogue_belly with bandaids

    Check out the Endo en Vogue blog here

    Her post is a thorough look at dysautonomia and includes resources which you can access by checking out her post.

    Cardiology update:

    So where am I at now? Well, I saw my cardiologist. I have seen him previously for various reasons.

    Initially, years ago, my PCP sent me to him to have a heart murmur checked out. Mitral valve prolapse had been heard too. (Interestingly, sometimes the murmur and MVP are heard in me and sometimes not).

    This was a couple years back and I was having dizziness and shortness of breath back then with fatigue (and without the near-fainting symptoms at that point). I had gotten an echocardiogram-stress test. It didn’t go so well. My lung pressure had been high. I was referred to a pulmonary specialist in the critical care unit of a large teaching hospital to rule out pulmonary hypertension.

    The wait to get in to see him was nerve-wracking since pulmonary hypertension can, in some cases, be fatal (and can co-exist with Raynaud’s, which I do have).


    Example of a typical CPAP mask

    The good news was that once I finally saw him, he did not think I had pulmonary hypertension. Instead, he suspected sleep apnea. So he had referred me to the sleep disorder clinic for yet more testing. (I had just had extensive pulmonary testing at his office). Sure enough, the sleep study showed I do have obstructive sleep apnea.

    I have blogged about sleep apnea previously HERE. They did two sleep studies on me (one to diagnose, another to fit me for a CPAP mask and measure what airflow I need).

    The first sleep study (without CPAP) revealed that I was getting zero restorative sleep. They said I simply wasn’t ever reaching that phase of sleep at all… all night. Hmm. That explained a great deal!

    Unfortunately, I have struggled greatly with problems with the CPAP headgear (long story). So I am not using the CPAP machine every night, as I would like. This is something I am working on. It has been a frustrating process.


    Regular readers may recall me mentioning that in the first 4 months of this year a I lost 36 pounds without trying (just from being sick for some unexplained reason). Well, I have gained 6 pounds back but that means I’m still down 30. I had talked with my PCP about whether she thought I was over medicated with the blood pressure medication, resulting in the “too low” readings. (We hadn’t seen any high readings yet. All normal and low). While she certainly saw my point and agreed the weight loss could have thrown my body off with medication/dosage, she still seemed to expect I’d get the tilt table test.


    When I first started publishing posts from this series, a comment was left by someone who noted that she found my blog through Alicia’s Yaya Stuff blog. Imagine my surprise when I pulled up her blog to find it is about dysautonomia! She has since informed me that she happened to find my blog right before I first posted about dysautonomia. Isn’t that something?

    Dysautonomia_blog_Too Many Heartbeats_HEART

    Check out Teresa’s blog, Too Many Heartbeats. Teresa shares her personal experience with dysautonomia. She has been through some very difficult experiences and I highly recommend checking out her site.

    Contrary to my PCP’s thought that the cardiologist would order a tilt table test, the cardiologist seemed quite fixated on the weight loss factor and wanted to reduce my dose on the beta blocker I use for the blood pressure. As he pointed out, it’s far easier to treat high blood pressure or low blood pressure than BP that’s spiking wildly up and down (like mine). However, he felt the next best course of action would be to lower my dose of that. (I have no objections to that. I actually would have been happy to try that sooner).

    It is striking to me how many women have both endometriosis and dysautonomia.

    I would like to thank Aviva for extensive exchange of messages on twitter, sharing her own dysautonomia experience, and promoting this series on twitter… thus increasing awareness about dysautonomia.

    If you are interested in promoting the dysautonomia cause and/or connecting with fellow patients, these hashtags have been in use on twitter:

    #POTS (postural orthostatic tachycardia syndrome)
    #dysautonomia (for the “umbrella category”)
    #NCS (neurocardiogenic syncope)
    #syncope (which means fainting)

    I have heard from women with the various forms of dysautonomia mentioned above. I also know that Endochick has mitral valve prolapse dysautonomia but I have not seen a hashtag used for that specifically.

    I would like to express my gratitude to the many women who have been so supportive of me these last few weeks dealing with symptoms like dizziness, lightheadedness, and feeling faint (plus the at times frightening blood pressure and pulse issues associated with these symptoms). I am thankful for all of the information that has come my way. There are so many caring people reaching out to support others going through similar circumstances.

    So, for now, I have “escaped” the TTT and we’ll see what happens. The last couple of weeks (including slightly before the beta blocker dosage change) have been better than that first few weeks or so, starting back in June. The cardiologist said these types of things sometimes pass. So, right now I’m just hoping things will keep going well!

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    August 12, 2009   13 Comments

    Dysautonomia? Part 4

    If you haven’t yet read my previous posts Dysautonomia? Parts 1, 2, & 3 please do so because this post won’t make much sense if you haven’t read them first. You can link to parts 1-3 of the dysautonomia series HERE if you have not read them, missed a part, or want to refresh your memory.

    Part 3 left off with me having found helpful information online regarding dysautonomia, including information here HERE on POTS a.k.a. postural orthostatic tachycardia syndrome (a type of dysautonomia).

    POTS Logo2

    This post will pick up where the last left off chronologically.

    The day that scared me:

    One day, I could not get out of bed. Let me be more specific. My husband went off to work and I was still in bed. My daughter tried valiantly to wake me up. I never even gained consciousness/was aware that she was trying to wake me up. Frighteningly, she tried over a period of hours to wake me up. (I feel just terrible that she went through this)! In any event, she finally got me conscious enough to recognize her, know where I was, and have some clue of what time it was. I felt just awful at what she had been through trying to get me to stir!

    So I used every ounce of energy I had and somehow managed to make it out of bed. I very carefully walked downstairs and it was a scary flight of stairs indeed. By the time I got to the bottom, I felt seriously faint and nauseous and knew I had to lie back down ASAP. I managed to stagger into a downstairs bedroom and collapse on a bed. Her response was, “no, Mommy, you just got up!” That is the last thing I remember. I was out for about 2 hours from that point. When I finally became conscious again, I had the presence of mind to ask her to go and get my new blood pressure machine.

    By this point I had gone out and purchased a machine after working my old machine to its literal death last summer and not wanting to spend the money to replace it until this summer… after having taken my blood pressure with a blood pressure monitor in a grocery store and finding it to be low (112/52) at a time when I didn’t even feel faint yet. I knew there had to be times it was lower than that and that those must be the times I was feeling faint. My blood pressure had never been that low before.


    Anyway, back to the day I couldn’t wake up. She brought the blood pressure machine to me and I then took my blood pressure. It was a scary 84/49 with a pulse of 46! No wonder I was feeling faint! No wonder I couldn’t get out of bed! That blood pressure and pulse really scared me. Prior to that, I had never seen my blood pressure under 115/75 at the lowest and my pulse has always hovered around 80-90 beats per minute. It made me wonder how much lower my blood pressure had gotten other times (because the first 3 weeks were the worst with the feeling faint and this was in the fourth week). By the time I bought a machine and started checking it, I was heading towards a better end of the spectrum overall (despite the day I just described). Another thing I found alarming was that my diastolic jumped over 50 points in just 3 hours one day. I got 90s over 50s many mornings and then a short time later I had pressures like 167/107. That was while on a medication that’s supposed to regulate my blood pressure!

    My primary care physician had seen me not once but twice in the week preceding this scary incident. She was on a two week vacation starting the day this happened. Her office wanted me to go to the emergency room. It was late in the day and her partners didn’t have any openings in the small amount of remaining time for office hours. I asked them, “what will they (the ER) be able to do for me?” I was told these two things:

    monitor my blood pressure

    adjust my blood pressure medication if needed

    I was already monitoring my blood pressure at home with my brand new machine. Having stranger doctors from the ER toy with my medications when I have an extremely complicated medical history and long, long list of drug allergies was not sounding wise to me. I understood why they were suggesting the ER but I also doubted a $200 copay trip in to the ER to be seen by strangers was going to be helpful. The office was basically just concerned with me being seen by a doctor… not so much an ER doctor. Then, my husband had a brilliant idea. He suggested going to my gynecologist. (I have a GYN and a pelvic pain specialist. He was talking about the GYN). This was a stroke of genius. My GYN knows my complex medical history and some people don’t even have a PCP. Some people use their GYN for the functions a primary care physician would do. I was so freaked out about my 84/49 blood pressure and feeling so lousy that I never would have thought of it. So that’s what I did. I thought it was classic that by the time I got out of the house and rode 45 minutes to his office and waited a little bit in his waiting room that my blood pressure had risen to nearly normal.

    If I had gone to the ER, the wait time there would be such that my blood pressure probably would have been high by the time I was seen. It certainly would have been at least normal because of what it was at the GYN. So I am grateful that my husband’s quick thinking saved us a grueling trip to the ER to have strangers treat me like, “why are you here?”


    More information from twitter friends:

    In the meantime, Elizabeth sent me tweets that revealed that she has another form of dysautonomia called vasovagal syncope. She sent me helpful information about the tilt table test (TTT) that my primary care physician was talking about being my next step (see below). Elizabeth sent me a lot of information about her experiences with the TTT. Elizabeth just blogged about her experiences with fainting today here:

    Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope

    Finally, my twitter buddy and fellow endometriosis patient Sherri, who you may know as @missmotorcade on twitter, shared information with me regarding her father who has similar symptoms to mine (which in his case were misdiagnosed as dysautonomia but are actually another issue).

    These are just the people I exchanged messages with the most. There were others. Again, I never even so much as sought out information on these topics. One reply tweet back to Melissa (see previous post for how one tweet triggered a large response from people on twitter) and everything just fell into my lap. Amazing! The power of twitter continues to surprise me all the time.

    So basically I had I waited out the two weeks my PCP was on vacation. I was tempted to call the cardiologist’s office but my PCP (who I really like) is a big “rule follower” and I didn’t know if contacting the cardiologist directly would be perceived as me “going behind her back” since it had been awhile since I’d seen him. I had already defied her office by not going to the ER and I didn’t want to tick her off. In any event, as I mentioned before, I got an appointment for the day she came back and she did want me to see the cardiologist. My primary care physician seemed to think that my cardiologist (with whom a have a previous doctor-patient relationship… long story) would order a tilt table test (TTT).


    Tilt table test

    While waiting to get in with the cardiologist (only a matter of a couple of days), I had learned about the TTT and was a bit apprehensive since it sounded the the objective of the test is to TRY to cause the patient to lose consciousness (while the patient is hooked up to monitoring equipment, of course). While not sounding fun at all, I certainly could handle that if it was what would get me answers/relief. However, beyond that I was learning about an arm catheter for administration of some sort of adrenaline-type substance being used for some TTTs. The arm catheter is apparently quite painful. So, basically, this TTT was sounding less and less attractive to me but whatever it takes to feel better, I was prepared to do!

    So, will I be having a TTT? Stay tuned for the next post!

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    August 9, 2009   13 Comments

    Dysautonomia? Part 3

    If you haven’t yet read Dysautonomia? Part 1 and Dysautonomia? Part 2, please do so because this post won’t make much sense if you haven’t read those first.


    Please note: The first post in my series on dysautonomia talked about my symptoms from this summer feeling faint, experiencing extreme fatigue and feeling dizzy and lightheaded. The second (previous) post covered why I came to be put on blood pressure medication (beta blockers). That factor becomes potentially relevant to what has been happening to me this last few weeks. The last post ended with a “flashback” to Summer 2008, when I was first prescribed the blood pressure medication. Now, let’s fast forward to June 2009.

    When I first learned about dysautonomia:

    Early on (this June) when my symptoms had first started, the very first person who mentioned the term dysautonomia to me was Endochick… who has a form of dysautonomia herself: mitral valve prolapse dysautonomia. She has blogged about her experiences with dysautonomia HERE and HERE.

    Here is a Dysautonomia Information Network trailer for their upcoming documentary, “Changes: Living with Postural Orthostatic Tachycardia Syndrome:”

    Fast forward slightly:

    As the weeks have unfolded this summer, I’ve had several appointments with my primary care physician (who did an EKG) and I saw my cardiologist on July 28th (who did another for good measure). More details on that appointment later.

    Somewhere in the midst of these appointments, Melissa sent me a tweet (Melissa on twitter) that was asking me how I was feeling. I can’t remember exactly how she worded it but her message opened the door for me to simply reply as to how I was feeling. So I had made some sort of comment referencing the symptoms I’ve described in this post. Just one simple tweet back to Melissa.

    Holy cow! The next thing you know people were coming out of the woodwork offering me more information on what might be causing my symptoms. Twitter’s searchability really is outstanding. I hadn’t even gone looking for information. I had simply typed one tweet message of 140 characters (or less) and information came to me… rapidly!

    Several people spotted the tweets between Melissa and me and sent me thoughtful messages.

    A thoughtful woman who has the twitter account @POTSawareness contacted me with information about postural orthostatic tachycardia syndrome, a form of dysautonomia. I highly recommend connecting with this twitter account if you are looking for information on postural orthostatic tachycardia syndrome.

    POTS Logo2

    @POTSawareness account on twitter

    She even sent me a list of doctors who are well-versed with POTS that is sorted by geographical area. We exchanged numerous tweets and her site Postural Orthostatic Tachycardia Syndrome: Raise Awareness had information that certainly sounded like a possible, if not likely, match for my symptoms. She also was thoughtful enough to remember the date of my cardiologist’s appointment and tweet me to see how the appointment went! This is yet another example of the amazing connections I’ve made on twitter and the countless examples of people’s thoughtfulness. She spent a fair amount of time cluing me in about POTS and I really appreciate her time and energy spent, especially in light of the fact that she’s reaching out to others despite the fact that her energy is quite limited by her own condition.

    My next post will begin with a description of the recent day that really scared me… the day my symptoms hit rock bottom. Some of you may have heard me refer to this day on twitter. I was far too sick to blog at that point but managed to stay connected with people by some rare tweets. Please stay tuned for my next post. It is the one that the previous posts have been leading up to.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    August 6, 2009   11 Comments