"Suffering the Slings and Arrows of Outrageous Fortune"

Tired but happy!

I finally am getting around to updating after our very long and tiring week. 4 medical appointments in one week is enough to wear anyone out, but I also have been fighting a nasty virus and barely made it through the week. Frankly, I feel horrible. Em and the rest of the family have already had this, so hopefully it will end with me!

It was a good week but tiring for both of us. As I have already said previously, her ingrown toenail was well taken care of. It hurts a bit and is generally uncomfortable, but is already healing up. The appointment with the new pain management doctor went very well and I am looking forward to notifying Dr. G that we will no longer be needing his services. I won’t get to say all I would like to say to him, but politely dumping him will be satisfying enough.

We also went back to PT. We talked about the possible vagal nerve compression that occurs when she is supine. Poor Chuck, he just kept repeating how complex her situation is – but he didn’t run away screaming, so he deserves a medal! He was able to modify the position that eases her headache. We will be able to have her recline in the recliner or prop up on pillows in bed or on the floor and I can be behind her and help her get in the position. It does rapidly ease her headache – within minutes, her pain can go from a 7 to a 0. The good thing about it is, she can manage her headache – when it starts getting bad, she can put herself into this position and ease the pain dramatically. We used it this weekend when her head got bad and it was very helpful.

As far as documenting the presumed vagal nerve compression symptoms, well, it has been challenging. Seems she is just not very willing to put herself into such a scary position for long enough to record anything. Can’t say that I blame her. So far, I haven’t been able to catch her blood pressure dropping so we will have to see where we go with it.

On Thursday, we went back to see Brian, our neurology PA. He was glad to hear we have found something that helps but he was still concerned about the significant trigger points in her neck. He thought injecting them was a good idea until Em demonstrated that when she gets into the relief position (I am not sure what the official name is… I will try to find out and share it, in case it would be helpful to anyone) the trigger points basically disappear. Once again, she was informed that she is a little out of the ordinary. He said most people with trigger points still have them no matter how relaxed they get. So, he was a little stumped on that one!  We talked about doing regular bloodwork to monitor her CO2 levels until we make sure they are where they need to be – so she will be going in every two weeks until it is managed. In the meantime, I am going to increase her baking soda tablets. I am flying blind with the dosage but we are going to start with doubling her previous dose and see where that gets her. Hopefully, we can find the right balance and make sure the Diamox is working at its highest potential!

I suspect there are multiple causes of the headaches and we are going to have to do some serious sleuthing to figure it out. Again, Brian is more than willing to walk with us on this journey and his confidence and willingness to listen is priceless. We may look at playing with her Diamox dose as we go forward, but for now we are just waiting on the results of the first blood test. He promised he would tell the staff to just tell me the results without any hemming and hawing like last time. Have I mentioned how much I love this guy??

So, all in all, we had a very productive week. I feel like we accomplished a lot and are actually developing a medical team who will help us do what needs to be done. It took me awhile to push through the frustration and despair that had come over me after previous doctor visits, but I am so glad I did! And having some good experiences gives me the strength to push on.

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Comments on: "Tired but happy!" (2)

  1. Jodee S Wresh said:

    B,
    I am a 41 yr mom of 2 who had surgery for A. Chiari. I have EDS, severe POTS, and Pseudotumor (high intracranial pressure). I haven’t read all of your entries but let me say this-barometric pressure (low) and fluxuations is my worst enemy. I live in Central Fl. which according to my neurologist,is the worst place for someone like me. I can’t take too much diamox bcs. it makes POTS worse. The meds for POTS cause high intracranial pressure. The integrity of my vascular system is poor at best due to a lifetime of EDS (undiagnosed until recently…another story all together!!!). I would be happy to offer insight from the perspective of an adult. Please feel free to contact me at any time. And keep this in mind, I KNOW that God provides a special dose of strength for those who are like me and are willing to ask Him for it!

    • Hi,
      EDS is so complicated and it sure sounds like you have had plenty to deal with! I hear you about barometric pressure changes – it is bad, isn’t it? And you are so right about relying on God to get you through.

      Thanks for commenting!
      Beth

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