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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.

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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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Dysautonomia? Part 3

11 comments

1 AvivaNo Gravatar { 08.06.09 at 7:08 pm }

The chronic illness community on Twitter and the Internet in general is amazing, isn’t it? I’ve never met more supportive people, willing to reach out and offer advice/info/emotional support to total strangers. I consider it a total blessing that we live in the digital age.
.-= Aviva´s last blog ..To Whine Or Not To Whine? That Is the Question =-.

2 JeanneNo Gravatar { 08.06.09 at 9:56 pm }

Aviva,

I totally agree! The support I have found online is just phenomenal!

From 1992-2008 I attended endometriosis support groups (locally/in-person). The turnout kept getting lower and lower at monthly meetings and we finally stopped having them in 2008. (I was the group leader who had to make the painful decision to stop monthly meetings). People were either too busy, too sick, or both… to attend local support group meetings.

While I was saddened by the meetings ending, I am very grateful that I had started blogging prior to it happening. By the time our local meetings had stopped, I was getting so much support online that the “gap” was not only filled but overflowing. I blogged about this transition HERE.

I never dreamed I’d be able to give and receive so much support as I do online. I was so accustomed to in-person support that I couldn’t imagine living without it. I never envisioned making so many friends online as I have in this past year. The chronic illness community online is absolutely amazing! I couldn’t agree with you more. We really are fortunate to live in this age… where we can find such amazing support without having to drive anywhere or feel well enough to leave the house. It really is amazing!

Jeanne

3 JasmineNo Gravatar { 08.06.09 at 10:49 pm }

I’m so happy that someone was able to catch your tweets and offer such vital information, Jeanne.
.-= Jasmine´s last blog ..Diagnostic Testing =-.

4 JeanneNo Gravatar { 08.06.09 at 10:58 pm }

Jasmine,

I’ve known the power of twitter for some time now but this really blew me away. So many people sending me information I hadn’t even actively sought out… it really amazed me. There are so many thoughtful people online. It’s heartwarming. 🙂

Jeanne

5 Jenni Saake - InfertilityMomNo Gravatar { 08.07.09 at 12:46 pm }

The wealth of knowledge available at our finger tips is amazing! I have learned I must be careful about the sources I use and check, then double check one person’s advice/experiences against a lot of good medical data to back it up. But who better to learn from than someone else who has walked the road ahead of me? So glad you are finding needed answers!

@InfertilityMom on twitter 🙂
.-= Jenni Saake – InfertilityMom´s last blog ..Medical Stuff, How Much to Share? =-.

6 JeanneNo Gravatar { 08.08.09 at 12:43 am }

Jenni,

I agree… totally amazing how much information is at our fingertips! I also wholeheartedly agree that caution must be exercised when choosing sources of info. I too check and re-check. I seek out research studies that support claims made (or refute them, as the case may be). Sadly, there are many scammers who prey on chronically ill patients. I try not to ever let my guard down regarding potential spam and scams.

However, that is not to take anything away from the mountains of info available online from reliable, high-quality sources. I agree that connecting with someone who has been there (or is there) is amazingly helpful and validating! I do feel I have a much better understanding of what’s happening to me now (regardless of whether my doctors do/don’t want to give it a label at this time) than I did a few short weeks ago… thanks to incredible online support!

GOOD LUCK with your migraine!!

Jeanne

7 YayaNo Gravatar { 08.08.09 at 9:53 am }

Oh goodness. What a profound video. I feel like I should dabble back into twitter world because I didn’t know any of this about you had gotten this severe. 🙁
I’m so sorry I wasn’t there for you.
.-= Yaya´s last blog ..Friday Fragments/Focus Friday =-.

8 CarmellitaNo Gravatar { 08.08.09 at 4:06 pm }

I am glad to see that you have named your website “chronic healing.” It takes searching and researching for our healing through gaining knowledge and wisdom.
.-= Carmellita´s last blog ..My Creative Buzz – Intuition and Insight for a Natural Creativity High =-.

9 JeanneNo Gravatar { 08.09.09 at 12:44 am }

Alicia,

I included this particular video because it was specific to POTS (postural orthostatic tachycardia syndrome) and I want to increase awareness of it and other forms of dysautonomia, regardless of what’s going on with me.

My primary care physician seems to think POTS may be what I have… but she was reluctant to put a label on it and instead referred me to the cardiologist. (She is the one who thought he’d order a tilt table test to rule out POTS but he instead adjusted my medication and scheduled me to see him again in a few weeks).

I should emphasize that I am not in a wheelchair. In fact, I have had noticeable improvement of my symptoms in the last couple of weeks. I have been in contact with numerous dysautonomia patients (including ones with the POTS type of dysautonomia) and there are some people who are severely debilitated and/or housebound from it. I am not one of them.

In talking with many dysautonomia patients recently and learning a bit about different types of it (vasovagal syncope, mitral valve prolapse dysautonomia, POTS, etc.)… I have learned that there is a wide spectrum of severity for symptoms, as there is with so many other health conditions.

My cardiologist believes that my significant weight loss over the last few months (pounds I certainly didn’t need but ones that were lost without trying… simply because I was sick) affected how my beta blocker is being processed by my body (i.e. overmedicated for my high blood pressure).

Granted, in the last few years I have had incidents prior to any beta blockers where I’ve had dizziness and fainting/near fainting that I always chalked up to other factors (heat intolerance, chemical exposures triggering my multiple chemical sensitivity, etc.)

It’s hard to say for sure what’s going on (100%) just yet. All I know is this summer is the first time I’ve ever had so much feeling faint and it’s the first time I’ve ever had low blood pressure. It will be interesting to see what happens.

I have had too many EKGs to count in the last few years plus two echocardiogram-stress tests. With one of those showing lung pressure that was much too high and leading to a referral to a pulmonary specialist and with that leading to another referral to a sleep disorder clinic where I was confirmed to have obstructive sleep apnea, there are many factors for me I think.

Oddly, my mitral valve prolapse and heart murmur “come and go”. (Sometimes doctors hear them and other times not). I have valve insufficiency. I believe many of these issues are interconnected.

I also have neuropathy and my PCP says neuropathy and POTS are caused by similar factors. Finally, I have the Raynaud’s Syndrome which affects circulation to my extremities.

So there’s a lot going on that may be triggering other issues. All I know is I feel better now than I did a couple of weeks ago and I hope it continues. I still stand up slowly to try to avoid head rush and feeling faint. Time will tell how this is going to play out but I’m grateful to have already experienced some improvement.

As I mentioned when I emailed you back today, I’m OK and you don’t need to worry about not using twitter. 🙂 My 5 part series here on the blog was barely touched on in 140 character tweets. So please don’t worry that you’re “out of the loop” because of twitter.

As far as being there for me, you have been! This all started back in June and you have been very supportive! Not only that but you are an amazing friend that one could only dream of having and even if we go a few days without talking directly, I know you’re thinking of me just like I’m thinking of you. Heck, you’re always there for me. So turn that frown upside down! 🙂 You are so sweet and thoughtful!

Jeanne
xoxo

10 JeanneNo Gravatar { 08.09.09 at 2:51 am }

Carmellita,

I stopped by your site and tried to leave a comment but for some reason it wouldn’t let me log in to comment. In any event, thanks for stopping by and I’m glad you like my blog name. I agree that it takes searching and researching for our healing through gaining knowledge and wisdom. Have a great day.

Jeanne

11 Dysautonomia? Part 4 — ChronicHealing.com { 08.09.09 at 11:13 pm }

[…] 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 […]

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