New member - hello!

[Maryn]

Just wanted to say hi, and introduce myself: My name is Mary, and I've been dealing with various and sundry health issues for years now.  It took the first 3-4 years to get my doctor to listen to me and take me seriously, and over the past couple of years, it's been an emotionally draining series of tests, (mis)diagnoses, dozens upon dozens of medications, and numerous trips back to square one.  Current (official) diagnoses are GERD, migraine, and inappropriate sinus tachycardia; my cardiologist told me that he thinks my tachy is due to dysautonomia (because of the other symptoms that it comes along with), but that I was on my own to find someone who specializes in that, as his expertise is strictly limited to cardiac issues.  Sigh.  I have great medical insurance...but can't afford to pay out of pocket to see a specialist.  

I'm 99% positive that I also have Ehlers-Danlos (Type 3); I get 8 out of 9 points on the Beighton scale, as well as hitting most of the major symptoms.  My mother also meets all the criteria for type 3, but has never been diagnosed.  :\  She - not surprisingly - has all the same symptoms as me, but due to living in a very small, rural town, has never been tested or diagnosed; the doctors available to her don't seem to be very knowledgable, and over the years have been just putting her on more and more medication.  Right now, she's on a cocktail of 40+ medications, including several different SSRIs, SNRIs, multiple benzos, cardiac meds, blood pressure meds, and diabetes meds.  She's an absolute mess, and miserable.  I'm terrified of ending up in the same situation.  

My symptoms all show up together, and they come in episodes - which is one of the most frustrating parts of all to deal with.  It's like a light switch - when the switch is on, I'm literally incapacitated.  I can't walk from the bed to the bathroom without having to hold on to the wall, and I can't even think about eating.  I can't form a coherent thought, and my husband has commented that he can tell when an episode hits, because it's like "the lights are on, but nobody's home."  My heart rate is crazy - it bounces between 60-150, and any sort of small movement sends it into the stratosphere.  The palpitations are so strong that I can feel my entire body pulsating.  I get pre-syncopic (but never actually faint), and lose my appetite completely, to the point where I can't even think about food without feeling nauseated.  I have to force myself to eat, and when I do, it's like the food just sits in my stomach for days without being digested.  My blood pressure is chronically low (baseline is 90/60), but I've seen it drop as low as 70/30 (during an overnight stay in the hospital, after I hadn't been able to keep food down for almost a week).  These episodes can go on for anywhere between a couple of days to weeks, and so far, nothing I do/avoid doing seems to make a bit of difference in how long the episodes last.  But in the short time between episodes, I am more or less completely fine - I can go to the gym, play with the kids, work on my hobby projects, and eat (pretty much) whatever I want without problems.

I'm currently on Metoprolol, which helps a little to keep the tachy under control, but it does absolutely nothing for the other symptoms.  It's so exhausting to deal with, and my doctors keep passing me around like a hot potato; my most recent appointment was with my cardiologist, who did an echo to look for mitral valve prolapse after the doctor at my annual physical said he could hear 'clicking' when he listened to my chest.  I hate waiting for test results.  

I'm sorry this got so long - I guess I didn't realize how much I'd been bottling this stuff up until I started writing.  Thanks for letting me vent a little - I am looking forward to getting to know everyone here, and hopefully I can be of some help to others as well.   

[Katybug]

Welcome,  Mary!

Your story has a familiar ring. Glad you found us!

If you haven't already, here is our physician list for you to see if we have any docs listed near you.  

http://dinet.org/index.php/physician-list?view=physicians

 

[SarahA33]

Mary,

Our physician list is terrific. Katie does a great job maintaining it and is always adding new doctors, so if you don't currently see someone in your area right now, you can check back. I have IST, too and the only med that has controlled my HR is Ivabradine (Corlanor). I dropped about an average of 60 points with it. It works on the if channel in the heart, but doesn't have an affect on blood pressure. Best of luck on your upcoming test results. I also have a very mild case of MVP, and can relate to your story of being passed around. It's frustrating, but there are very good doctors out there. Take care, Sarah

[MomtoGiuliana]

Welcome Mary.  So sorry you had to seek us out but glad you found the forum and hope it will be helpful to you.

[Kaitlyn]

Welcome Mary. Appreciate your story and you being willing to trust and share. It is a long and winding road with many frustrations along the way dealing with all of this.

Sorry to hear about your mom. I am sure it is hard to see her that way. 

I understand your cardiologists response. I have an awesome EP/Cardiologist who is the director of the unit here, however, he is not a neurologist and not specialized in the autonomic nervous system. Will your insurance cover a visit to a neurologist? If so I would find one familiar with Dysautonomia. 

I can relate to many of your symptoms. I hope you find the help and support and treatment you need.

Best wishes ??

kaitlyn