Sick since 1989, started passing out; been told the problem has been my heart all along

Discussion in 'Fibromyalgia Main Forum' started by Cattttttt, Oct 25, 2014.

  1. Cattttttt

    Cattttttt Member

    I've had CFIDS/FM since 1989. Was at the first national rally. It started with FM, then CMV. Had all the symptoms and meds as everyone on here. Was doing well for many years, although on many many meds and supplements. Decided to wean off most of my meds. Felt great. Major stress hit. My Mom fell; now severe dementia. My domestic partner of 3 years had surgery and got a colostomy. All the while I had to maintain my business as a self employed personal trainer, nutritionist, health counselor, to support myself. I could no longer have my rest and recline times throughout the day. I started feeling the adrenaline again. I started collapsing. Blacking out, hitting the ground hard. My cardiologist sent me to the director of the arrhythmia center at St Francis Hospital, Dr Levine. He said all the CFS patients come to him. He told me to look for palpitations before I passed out. Yes, I had some kind of palpitations/arrythmia. At a visit, when I had it, he heard it. Tilt Table was negative. But my heart rate barely increased with the adrenaline drug he gave me. I said couldn't this be neurotransmitters or seizures? He said no, he put meds in the IV to rule that out as well. I went into the hospital for an EPS Study; electrical cardiac catherization. Negative. He convinced me to implant a loop monitor, after I sad no. Told me to do my research on CFS and loop monitor. I did. CFS patients heart rate and BP bottom out; sometimes stop!! While implanting it I had a full blown episode of vasovagal while lying on the table. I could need a pacemaker, defibrillator, or meds. The loop monitor will tell the story. He says this could have been my problem, all along. responsible for muscle pain, fatigue, brain fog, immune deficiency, everything. I hope my story helps others. Perhaps I will know what normal feels like, and few meds before I die. I am 58 and have been sick since 1989.
  2. Soul*

    Soul* Well-Known Member

    Hope you feel better soon and long after Catttttt better late then not ever finding out what helps you.
  3. Cattttttt

    Cattttttt Member

  4. lea

    lea Member

    Hi Catt:

    Hope you feel better. Keep us posted.

    Last edited: Oct 27, 2014
  5. Cattttttt

    Cattttttt Member

    I wanted to post an update. Increasing salt and water didn't work. I ended up going back on my naltraxone 4.5 mg. This seems to have worked. Hated going back on it, but it seems to help with everything. Now I have severe GI problems, constant burning, like acid. They put me on Protonix, which seems to be helping but am having my stool analyzed for bugs and parasites. Also testing for lyme again, since I also got a rash on both my legs for a few weeks, out of the clear blue sky. If no results, I realize I must go to private CFS MD for help. So sick of this, after so many good years.