dizziness is back

[ddavey]

hi again everyone    i have a question...   amber is beginning to feel lightheaded and dizzy again.   i am not sure if this is from the cardiomyopathy or from pac's.  she doesn't say that she feels hard beats in her chest like she was before, and she has never really said very much about "feeling her heart", only on a couple of occasions.  two weeks ago when it was unseasonably warm here she was walking a bit more than usual, and she had also joined a bowling and fitness class at her day program, she was very lightheaded and dizzy several times and looked pale.    a month ago her digoxin level was increased by an extra .125mcg pill four days a  week, and the amount of pac's are up 7,000+(per 48hr holter 30,000+ in may, 23,000+ with addition of digoxin in june) since unsuccessful ablation in july.  she hasn't been this bad since they added digoxin to regimen, and even with the increase she is still not doing as well as she had been before ablation.   i don't know if this is related to the pac's, or since the pac number is up that her heart function is down again.  we are scheduled to see her cardiologist on dec 7      thanks again       dawn

[Momto3]

Hi Dawn,

Is Amber scheduled for an echocardiogram?  I'd want to be sure her heart function has not diminished.  Does she actually feel "dizzy" (like vertigo) or "lightheaded?"  I generally feel more lightheaded than dizzy, and do not feel as if I am about to pass out.  Does Amber lose her balance or feel as though she may fall?  

Any new word on whether Amber is yet a candidate for follow up ablation?  I know you guys are at a very reputable center and that her situation is particularly complex, but what options have you been given. Are there any other safe medications for the pac's?  

[ddavey]

she was telling me tonight that she is losing her balance at times  (she asked "if i feel like im losing my balance is that the same as feeling dizzy?)  she feels the losing of balance more than the dizziness i think    it's hard for her to explain sometimes   i think it is more lightheaded than dizzy.  she says the loss of balance is more in the late afternoon.   she had an echo last month and i wasn't able to get the ef number (i am working on that)   she had a blood draw on tues (she has a history of ovarian tumors) and we are waiting for her iron number (she was anemic last year) to make sure it's not her iron level    they have made it clear that they feel it is too risky to ablate on the left, but i am pushing them to try fo figure out if they can go thru the mass to ablate, or to remove the mass if it is causing the pac's.    the only med they mentioned was amiodarone and he felt that given her age and the side effects it was not a good option   thanks    dawn

[Momto3]

Dawn,

When you do get a chance to talk to her physician, mention the "off balance" spells. Do you sense that she may pass out?  I'm not sure they would even do this, but has Amber ever had a tilt table test?

Hopefully, the anemia and ovarian tumors are not the problem.  She has enough to deal with.  I remember you saying that the doctors felt ablating on the left was too risky - I was so hoping they had come up with some type of safe plan.  Not crazy about the amiodarone, but have the doctors discussed what they plan to do if her EF does drop?  Given all of the circumstances, Amber seems to have a wonderful team of doctors.  Good luck and please keep us posted.  

[ddavey]

they still keep saying to keep her on medication regimen     i understand that they always want to go with the least invasive, and that surgical treatments will probably involve open heart surgery, but i have always said that if open heart was in her future, i wanted them to do it while she is relatively stable and not wait until it is riskier to do.