Heart Health Update

I know I should have updated before but …

Since the last heart entry:

• I have been on a few more meds and even a combination to no avail.
  
• My MRI came back clear (no stroke), praise the Lord!
  
• I was diagnosed with COI, Chronic Orthostatic Intolerance so named by neurologists, something something Tachycardia by cardiologist; but it’s the same thing. The two medications I was on the longest are known to cause COI and I have other classic symptoms.
• My blood work came back indicating that my thyroid had indeed been negatively affected by the meds; thus the swelling of my extremities (I had to take my rings off because of my thyroid not any marital trouble, that’s a bit of humor, but true)
• I was taken off all medications for a 3 month trial period (to be over in about 2 weeks) – This has been awesome!!!
• Atrial Fib and Neurovascular Syncope are still an issue, but for the most part occurring only during the last 2 weeks of the feminine cycle. This makes sense as the atrial fib was originally caused by synthetic hormones that were made to mimic the natural hormones released at this time – also syncope is a blood flow issue and of course blood flow is changed at that time as well. My last cycle scared us a bit; as I almost didn’t make it from the chair to the sofa (syncope) then immediately went into A. Fib at 187 beats/min. It just underlined the fact that their suggestion that I don’t drive at certain times of the month was not really a suggestion.

COI unfortunately is not contained to 2 weeks each month but a daily constant. COI causes the weird neurological sensations, chronic Tachycardia (rapid heartbeat), weakening of muscles, brain fog, and fainting sensation. For which the patient needs to lay down much of the time.

With extreme care COI is possibly reversible through exercise. It is hard because the cure can cause increased Tachycardia and for me (just because I like to be special) Syncope, both of which can lead to Atrial Fib and other undesirable outcomes.

• I am to increase exercise at a ridiculously slow rate 2 – 5 minutes a day for a minimum of 1 to 2 weeks before increasing it by another 2 – 5 minutes and so on to get rid of COI, while trying to avoid syncope and atrial fib. Recommended exercise is on a stationary bike then a treadmill – I have both. I am not able to exercise if I have a flu; as with congestion comes breathing problems which naturally increases the heart rate and I cannot increase it any further.
• I am able to drive again limited to days when the exercises doesn’t trigger COI, Syncope, or Atrial Fib and not during ovulation/menstruation.
• I can resume normal house work etc with the same limitations as above
• I have been warned by the doctor that this is a long process, he suggested 5 years as a minimum, articles we’ve read on the internet say recover is undocumented – Praise God now that it won’t be that long!
  
• There is a procedure but it only has 50% success rate and it would limit my life forever as it involves a pacemaker; I would be sent to a hospital in a different state if they would take my case (my doctor has referred others with less complications, who have been turned down)
• Along with COI my thyroid has been damaged – it is being watched, the hope is that further from the damaging meds and with the exercise it will recover and I will lose weight again, plus be able to lose the weight gained due to side effects. This is huge prayer request! As losing weight will benefit my heart and spur on COI recovery. Getting rid of COI will lessen syncope as no longer will everything be a “stressor/trigger”. Lessening syncope, as well as time away from med induced atrial fib, could possibly make me atrial fib free. In addition the added weight and my family history make me a candidate for Type II Diabetes so a functioning thyroid would be very beneficial.

Current Prayer Requests:

• Wisdom to know when to go to the hospital if atrial fib or tachycardia become a problem– this is not clear cut due to the multiple issues
• Wisdom to know when and how far I can drive – we don’t want to get stuck somewhere or have an accident
• Patience, about two years ago I was doing an hour on the treadmill
• Wisdom to know how long to exercise, and when to do the next increase
• Again, against atrial fib and stroke and that syncope be back under control
• Healing from all side effects: brain fog, COI, thyroid, vision, unspoken.

Just so you don’t think it’s all bad – I have been loving being off the medicines! Just being of the medications allows me to push through some of the COI (as long as I don’t go above 150, I have to back off when I start getting into the 150s).

My mom had to come visit to make sure when I started excising nothing happened; but we got some bulk groceries in, some deep cleaning done, and she taught me how to crochet. Of course the boys loved having her here and kept asking when Poppop was coming down and who would visit next Grandma and Granddaddy, cousins, Aunts, Uncles …

But the best thing of all is we’ve been reading a lot about thyroids and Iodine came up – we had already read that Iodine deficiency can play a part in Atrial Fib as well. So, I started taking the recommended Iodine supplement last week and my heart rate has decreased 10 to 20 beats across the board: at rest, laying down, standing up, even not going as high while doing my few seconds of exercise! Hopefully, this will continue to be the case even during “that time”.

I want to thank everyone again for all the prayers and offers to help. Especially, for rides for the boys to their activities – it means the world to us!

We’re still expecting a miracle!