Oct 09, 2011
We got back from the Mayo Friday night close to midnight. It was a good week, Cody was having a good week. New results, new plan...
1. Tilt Table Test came back showing some orthostatic intolerance, not POTS. I'm somewhat ambivalent about those results though. It was only a 10 minute tilt test and he only stopped taking midodrine and doxepin the day before. I know the midodrine doesn't matter, but he was still on the fludrocortisone. When we had all the testing done in Cleveland he had to be off the medications for 3 days and the test was 35 minutes. I'm not sure if these meds would sku the test since they are for his POTS symptoms. Plus a 10 minute test I've read is too short.
2. He had an exercise test, and of course he is very deconditioned. The 3 week pain recovery program will help with this. While he was able to do the test, his heart took way too long to get back to it's normal resting heart rate.
3. Iron in his blood was fine, but his reserves were depleted. That can cause nausea and exhaustion. So he will be on iron pills.
4. If someone is sick for a very long time, their brain gets stuck in sick mode and only believes it is managing a sick body. So, to break the cycle, he can't stay in bed. He needs to get up and work through the sickness. The longer he stays in bed, the sicker he gets, vicious circle. The motto is the Nike motto-Just do it. So I printed out the Nike logo and posted it around the house.
They think he is actually in recovery for the autonomic nervous system. All the tests showed the autonomic nerves were capable of working fine. So, exercise, regular sleep, regular get out of bed schedule should put him back on the road to 'functionality'. It's not that he is going to be cured, but he should be feeling better.
This does make some sense, in that, when his symptoms kept gradually increasing, adding one at a time, he really doesn't have any of those symptoms any more, except the nausea and tiredness. And the tiredness is because he is so out of shape.
I am hopeful that the pain rehab will be the thing that jump starts the rest of the recovery.
We are also stopping some meds/supplements. The doctor said he doesn't have POTS anymore, but is still POTSY symptom wise so the meds aren't necessary.
We finished with testing early one day and headed to the Mall of America. Cody walked the whole thing from top to bottom and is still doing fine. More evidence that when we travel, he has a good week, so breaking his home routine will be helpful.
Yesterday, he rode his bike around a bit and today he went for a couple of walks. I think I will have to hold him back from over doing it so he doesn't crash. He is supposed to gradually get back into exercising. He is ready to resume his normal life!