Strictly Medical--The Latest Scoop

As most of you know this past week has been mostly consumed with medical stuff, so for those of you who like the 'medical scoop,' here it is.

A week ago Friday, I went in for IV fluids (which can sometimes help relieve symptoms of POTS by increasing fluid volume, increasing blood pressure, and decreasing tachycardia). I had a charming nurse (NOT!) who lectured me on how great my life is, how 'young and healthy' I am, how hard I need to try to get better, and how it's all 90% attitude. I was so weak I really couldn't argue with her, I just told her I didn't really need a lecture. Like I WANT to be this sick! I wanted to say, "If I could have willed myself to be better, I would have been better a long time ago!" How come we always think of comebacks after the fact? Sorry, a little vent there.

Anyways, I could not get an appt. with my PCP, but when his nurse came up to see me in the IV room, she said, 'Oh Emily, you look awful.' Gee thanks! My PCP had been called to the hospital to admit a patient, so the nurse ended up sending us to the ER for another bag of fluids and to see my PCP at the hospital. As always, he was wonderful and compassionate, but it is so hard because he feels so helpless and doesn't know what to do for me.

I had been taking a medication called Topamax (or Dopamax--our slang name b/c it makes you so dopey!) and he suggested that possibly, given my extreme sensitivities to meds, this was wreaking havoc with my Autonomic Nervous System. So we decided to stop that med, and wait out the weekend.

I went back in for a 'sick visit' appt. on Monday morning. We did another round of IVs and strategized for my next regularly scheduled maintenance visit on Thursday.

In between these appts. I saw my PT who has seen weekly the fact that I have become weaker and more miserable. While she was here we paged my POTS doc and spoke with him for a few minutes. He has been on ward service for a month, so we couldn't talk long, but it helped my PT to feel a little better as we have not been able to make progress at all in the PT plan to help with the cervical stenosis.

Thursday was the BIG appt. that helped me the most to come up with a starting plan for the next few months. I had a 45 minute appt. with my PCP, at the end of which he held my hand and said 'Take care, my friend.' I am soooo grateful to have him in my court. Although he has little knowledge of Autonomic Disorders, I am unlikely to find ANYone in this town who does. He admits that he has never seen anyone like me. I always knew I was 'special' but this wasn't quite the way I had hoped! Being a medical marvel is not fun!

Anyways, while I was at my appt. he paged my POTS doc and they helped come up with some things to pursue:

1. Rule in or out the possibility of Lyme Disease. Seek out a Lyme Literate Doctor and see if this is causing/contributing to my POTS. This will mean traveling.


2. See a neurosurgeon who comes to our town from a larger hospital to evaluate my cervical spinal stenosis. See if he has any experience with Autonomic Nervous System disorders.


3. Try a new anti-depressant to see if it helps more with symptoms and my increasingly 'blah' mood from this extra-tough time. The one I am on may be contributing to my insomnia. This newer one has also helped a lot of patients with fibromyalgia--so that might be helpful to me also.


4. Email with POTS doc after he is done with ward service and things settle down for him!


5. Give the Topamax a little time to get out of my system to see if I feel a bit better. ( The fact that I can even type this post is a BIG change) but I still am incredibly weak and feeling lousy.


6. Best guess is still that the intubation and subsequent positioning of my neck during GB surgery set off a major reaction with my neck.

This game plan helps me to feel like I am being as pro-active as I possibly can be. At this point, my quality of life is very low, and I am so much worse in year 7 of this illness than I have been yet. So, I want to rule these things in or out. I am so scared of it getting worse. And I want to make sure we aren't missing something. I have such super medical care and feel that I am being held in the most caring hands and and helped by brilliant minds. This gives me a great deal of peace, b/c previously I felt that no one was really paying attention and I wasn't taken seriously. I now have a superb team of PT, POTS doc, and PCP.

So that is the plan, I will keep you posted on upcoming medical appointments, etc.

I am feeling just a teeny bit better off of the Topamax, but am still very weak. I need help with most everything, as my standing time is virtually non-existent!

As for sleep? I'm not quite so sleepless! I went back on Ambien after all of that! And started Magnesium, which helps sooo much it is amazing. I still wake up feeling like I haven't slept at all?I feel like a wet dishrag (as my Grandma would say) and long for mental clarity. But it sure beats being up all night!

As always, thank you for your AMAZING SUPPORT AND LOVE through this. I continue to be overwhelmed by your kindness.

Love and Blessings,
Emily