Did not have GERD until my 2nd dilation!

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New Member

Date Joined Jan 2012
Total Posts : 1
   Posted 1/30/2012 5:54 PM (GMT -6)   
Hello!  My Novella:
I'm a 50-year old female with a Connective Tissue disorder (Ehlers-Danlos Syndrome Classical).  I'd had chest pains once or twice before (3 years or so ago), but they didn't last long ... I did end up going to the ER during the second bout because my husband had just had a heart attack and we were concerned about what I was experiencing.  That episode resulted in an overnight hospital stay with my heart testing perfectly normal and I was released (with no follow-up for the chest pains since they did not reoccur). 
Well, this past August, I began experiencing chest pains and these would not subside (sharp, stabbing pain that went from my sternum to my back and radiated through my left shoulder to my left arm and jaw).  A trip to the ER (and subsequent overnight stay) again resulted in normal heart function (I have to qualify this by saying because of my Ehlers-Danlos, I MUST go to the ER for any chest pain because it could be due to my aorta dissecting, so checking out my heart with CT scan with contrast is a must).  I was released with Percocet and had a follow-up.  My doctor sent me for a barium swallow and that revealed esophageal dysmotility (spasms rather than normal peristalsis) and she put me on Nexium.  I could no longer eat solid foods without causing the spasms and have been on a liquid/highly pureed diet (mostly protein drinks) ever since (dropped 15 pounds in less than 6 weeks and really can't afford to lose any more).  Even swallowing the tiniest pills (meds) causes the unrelenting spasms, so most of my meds (except the Nexium) need to be liquid.
Originally, it was thought I had Limited Scleroderma and in the subsequent months (while waiting for a referral to a rheumatologist at University of Alabama at Birmingham - UAB - Medical Center) I was first sent to a GI doc who scoped me and dilated my esophagus because my weight loss was "scaring" people and the thought process was that I might have a stricture or something (scope and all biopsies were normal, though).  I was prescribed nitroglycerin first (didn't help at all and just left me with a pounding headache), calcium channel blocker (don't remember the name, but it cause such a drastic drop in my blood pressure that I nearly blacked out constantly), visceral analgesic (Tofranil - did nothing to alleviate the spasms), and Effexor (again, no relief).
Although I was constantly experiencing the spasms, I was told to go to the ER if there were any "changes" or other symptoms, so when I had nausea thrown in to the mix, I went back to the ER in October.  Even though my heart checked out fine, my sensitivity to the pain medications caused me to be inadvertently "overdosed" and I spent 4 days in the hospital (one in the ICU) instead of my normal "overnighter."  Once again, the GI doc scoped me and dilated my esophagus - this resulted in me experiencing GERD (never had it before) and after a 2nd GI doc opinion this past month, I now have to take my Nexium twice a day instead of just one in the morning (still does nothing for the spasms).  He also said that every protocol had pretty much been done and there was nothing else that I could try.  He also said I'd only been having pain for 5 months, so it could "go away" on its own at any time ... Really?
My primary care doctor has been trying researching other things to try to alleviate my pain (I don't like how the narcotics make me feel and they truly aren't resolving anything with my esophagus).  He had mentioned peppermint oil as well as sildenafil (yupper, Viagra!) and it was in my quest for answers that I stumbled upon this site and I have since spoken to him (he called me) about the Nulev that was mentioned.  He cautioned me about "forums" or other sites like this and I understand, but when I mentioned the Nulev, he admitted he'd not thought of that and will write me a prescription to try (hey, anything is worth a shot about now)!

Elite Member

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/30/2012 7:58 PM (GMT -6)   
Hello and a warm welcome to HealingWell.  Sorry we have to meet this way but I am sure glad you found the forum.  Some Drs. like forums so patients can find others with info and support for each other and some just don't care for the forums.
With your long history of problems I am glad to see you advocating for yourself. From doing a bit of research I see there is not a lot of info on the use of Neluv but I did read of several people that felt it was helping them.  I agree with you,  it is sure worth and try.  Losing your quality of life do to the spasms is not a good thing either.  
I wish you the best of luck with this med and please do stick with us as we are here to support you so vent away, share here in the forum and count on us to understand.
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.


"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"
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