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Tag: Conditions and Diseases

in the news: POTS and autoimmunity…

in the news: POTS and autoimmunity…

There has been a lot of interesting news about POTS recently. I want to share one study in particular with you that I think you will find interesting. Since it was first categorized, specialists have speculated about the origins of postural orthostatic tachycardia syndrome (POTS).  Early studies such as this one suggested that, due to the presence of ganglionic acetylcholine receptor antibodies in some POTS patients, POTS may be autoimmune in origin.  Additionally, in some patients POTS is triggered by…

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in the beginning…

in the beginning…

Today is my POTSiversary. What is a “POTSiversary” you might ask? It’s the totally clever way of saying it’s my illness anniversary! Three years ago today I underwent a tilt table test and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia. Prior to that, I was diagnosed with ME/CFS and a mild case of gastroparesis. I still do not know what has caused my POTS. I don’t even know if something has to have caused it,…

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chronically ill holiday guide 2013…

chronically ill holiday guide 2013…

I posted this guide for people with chronic illnesses and their loved ones last year. I wanted to share it again this year, as I have made a few updates. I realize Hanukkah ended last week, so I apologize to my Jewish friends for not getting this up sooner. The holidays are a wonderful time of togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a…

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flights are like doctor visits…

flights are like doctor visits…

…even when they’re good, they’re still really bad. I never loved air travel prior to dysautonomia, but it’s no secret that I now loathe flying.  Airports and airplanes combine some of the most symptomatic inducing experiences – lots of standing, altitude changes, dryness and increased dehydration, carrying heavy items, noises, lights, vibrations and unexpected movement. I had posted previously about some tips for flying on a wonderful blog post over at With a Side of Salt. I knew this was…

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MCAD, FMS and other random letters…

MCAD, FMS and other random letters…

I had an appointment with my cardiologist yesterday to discuss the bradycardia I had been experiencing. However, it takes about 6 weeks to get an appointment with this doctor, and by the time I was able to get in to see him, my heart rate had increased. As you may remember, I was having problems with a low pulse of high 30’s to low 40’s bpm.  For the past week, my HR has been up in the 60’s and 70’s….

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the medication dilemma…

the medication dilemma…

About a week ago, I stopped taking all my dysautonomia/ME/CFS medication.  I don’t exactly know why. One night before bed it was time to pop the pills, and I just decided I didn’t want to. And the next morning, it was the same thing. I didn’t discuss it with my doctor, I didn’t discuss it with my boyfriend….I didn’t discuss it with anyone. I just stopped. The first few days I experienced some minor withdrawals. I was nauseous, sweaty, and…

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chronically ill holiday guide…

chronically ill holiday guide…

Can you believe the holidays are upon us already?? Where does the time go? The holidays are a wonderful time of family and togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a chronic illness, holidays have the potential to be miserable. This is my second holiday season since my dysautonomia diagnosis, so I’m not a rookie, but this is only my sophomore attempt. Last year…

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miserable day…

miserable day…

As you may remember from my last post, I have had some problems with allergy-like symptoms lately. In preparation for my appointment with the new doctor, I stopped a few medications on Monday night, including the daily antihistamine I have been taking. The first two nights were bearable, but the lack of antihistamine finally took its toll last night. In this case, third night wasn’t the charm. I woke up in the middle of the night feeling awful – sneezy,…

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Global Dysautonomia Awareness…

Global Dysautonomia Awareness…

Hello and Happy Autumn to you all! October is Global Dysautonomia Awareness month! Don’t worry if you didn’t know – this is actually the first ever Global Dysautonomia Awareness month!!  Dysautonomia International, the new worldwide organization whose goal is to raise funds for dysautonomiac research, raise awareness of dysautonomia, and to empower patients and caregivers recently launched its website. Until now, there have only been individual localized groups, so a global organization is a huge step forward.  Check out their…

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changing perceptions…

changing perceptions…

Yesterday was the fourth anniversary of my twenty-ninth birthday. For those of you who hate math, that means I turned 33.  For four years now I’ve refused to officially turn 30, not because I’m afraid of getting older, but because I feel like I never had the opportunity to give a proper goodbye to my 20’s. Although I was not diagnosed with dysautonomia until last year, I started experiencing symptoms in 2009, just months before my 30th birthday.  I had…

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