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Sunday, April 21, 2013

Free Falling

It has taken me since Thursday to recoup ( my version of recouping) from my visit to the Vanderbilt Autonomic Dysfunction Center where I was diagnosed (finally, it only took 14 years) with Hyperadrenergic Postural Orthostatic Syndrome. Say that three times fast......  Couple that with Fibromayalgia, which many people do, and you have quite a nasty mess.  Apparently, the hPOts is quite difficult to manage. You have hyperstension when standing instead of the usual hypotension that is usually seen in POTS.  Your heart still tacs out  but your BP, especially the bottom reading, shoots very high as well. I saw Dr. Italo Biaggioni at Vanderbilt. He was awesome, even if my experience with the inept clinic staff was less than satisfactory. I emailed him  all my concerns, mainly that  I would NEVER get my results in a timely manner and within one hour he had emailed me back a complete test result sheet and a copy of the management plan for my primary care physician. That is unheard of...  But back to the issue: since I have been managing this nightmare for over  a decade with salt, water and Toprol, he made a few medication changes. He believes the Toprol is possibly contributing to my fatigue. I only take a tiny dose each day, but as with most  hPOTS sufferers, I'm super sensitive to drug dosages and a little goes a long way. I am changing to old school Inderal, very small doses and stopping the Toprol all together. He is adding Aldomet, low dose again, at bedtime. Then when I am acclimated to the new meds, he wants me to try  low dose, not more than 25mg a day, of Savella again. It does increase your heart rate, so i have to really watch the side effects. I told him I felt better on Savella low dose than I had felt in years, so he wants me to add it to the treatment plan .  Also an abdominal band was discussed instead of pressure support hose.I found many to choose from on the internet via google search.  He stated the hose were so hard to manage and put on daily that they were now recommending the abdominal band to most people. He said that  most of the blood pooling was in the abdomen area in many patients. Since I am so de-conditioned (yeah, what every girl wants to hear) a very slowly progressive exercise plan was needed. He recommended mainly resistance bands, recumbent bike and swimming. Start very slow, just five minutes or so every other day until you slowly build up your strength.  He said absolutely no aerobic exercise at this point( if ever) and nothing that involved standing, like a treadmill or even slow , short walks.  He said it is imperative if you have POTS that you build leg and abdomen muscle...slowly in my case. I have a recumbent bike, so that is a plus. I will just have to try to find it under all the clothes .......
The past few days have been a roller coaster of emotions ...I knew I had something very wrong and there is great relief in finally getting a diagnosis. But on the other hand, this confirms my worst fear for the future. I know many people with hPOTS become disabled. Being a single person and the bread winner , this is horrifying to me. I'm a pretty strong woman and can bend in the face of most storms, but selling my beloved  home and downsizing to an apartment was never in my plans. I fought like hell to keep it when my ex ran away with the spoon and succeeded.  Ironically, I have said many times one of my favorite quotes is "Man plans, God smiles".   ouch............... I suppose there is a lesson in this somewhere.