Dysautonomia (Autonomic Dysfunction) Community
Severe dysautonomia, what do I do?
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Severe dysautonomia, what do I do?

Hello everyone. I just found out I have dysautonomia. I've been bedridden since December 2013. I tested positive for HHV-6 twice, once in January and again in July. I came down with a viral-like illness in November and became increasingly weak until I collapsed and have gradually been pulling myself out of that. I'm still mostly bedridden, and completely housebound. I am a 37 year-old female and I have the diagnosis of HHV-6, Chronic Fatigue Syndrome, and Dysautonomia. I recently started being able to stand and walk a few steps again. Here is my problem, on some days when I stand my blood pressure drops. I am on fludrocortisone for low blood pressure. On some days, when I stand my blood pressure is high in the diastolic, like 117/90. Other days it seems to be closer to normal. Two days ago I was able to stand up and walk around the house and I did a few exercises. The next day I didn't feel well and now today I can barely stand because I get high blood pressure and tachycardia as well. My blood pressure is all over the place. Is this due to being in bed for so long? What can I do to make it better? I am on medi-cal now, because I have been out of work and on disability since becoming ill, and I don't think most doctors are familiar with treating this illness, so I really need to find as much help as I can through people who are going through this.

Thank you!
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I can't speak to the HHV-6 at all, because I'm really unclear on the clinical significance of testing positive for that. From what I understand, 20-25% of (healthy) adults in the US do test positive for it. There's more significance if you are immunocompromised; have you been diagnosed as immunocompromised? Is it an acute HHV-6 infection (rare in adults) or latent?

Hopefully you can help me understand that part a little better, because that's a bit outside my realm of expertise.

As for the dysautonomia, did you have a tilt table test? What were the results of that? You mention high blood pressure, are these just the high diastolics (i.e. low pulse pressures) or do you get high systolics as well?

Prolonged bedrest can certainly contribute to the problem, yes. To help remedy that, you want to get on a progressive exercise regimen like cardiac rehab or physical therapy. Can you ask your doctor for a referral for one of those? They should adapt it so you start off doing only sitting/reclined exercises in the beginning until you build up more tolerance. Your primary focus should be building up your leg muscles, because those muscles help pump blood back up to your heart.
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