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Jessica_

Treatment for hyper-pots

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My plasma NE was 1962 mg/dL (or whatever the units were), so I qualify as hyper POTS.  I do not think mine is primary, though, but a result of my body trying to deal with overly-stretchy veins and low blood volume.  I take clonidine to keep a lid on the sympathetic nervous system and florinef (with extra salt and water) to expand blood volume.  Some of the salt and water comes from a homemade Pedialyte-like electrolyte drink.  I wear compression hose as needed and I elevated the head of my bed.  All this has helped tremendously.  I also try to get exercise in, both cardio and weights.  Keep in mind that I was never so badly off that I couldn't work, although being a graduate student and then working in academia is very flexible when it comes to workplace accommodations.  I think the critical part of treatment is not what subcategory you fall under, but which mechanisms are causing your symptoms.  I hope this all helps.

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I'm hyper too.  I also exercise, both weights and aerobic.  I'm quite severely impacted but after three years, countless med trials and a year of physical therapy (still going) I can manage walking for 45-60 minutes on a good day.  I take Bystolic for tachycardia, methyldopa for norepi surges (works more smoothly for me than clonidine), wear compression stockings, elevated the head of the bed and loads of salt and water.  I'm homebound and ride my stationery bike and use a rowing machine 3-4 times per week.  I do strength and weight training other days as tolerated.  I also had an autoimmune disease crop up since being diagnosed and treating that with Plaquenil has helped the most with the severe fatigue.

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There is a large overlap in treatments for regular vs hyper POTS.  If you tend to have high BP because you have hyper POTS, the doc might avoid the BP boosting treatments. But then again this isn't always true - as you can see both people in this thread wear compression stockings even though they are hyper. It is really based on the person, so the best thing is to work with your doctor.  You will often have to try several treatments before finding the right combo.

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Thank you all for your replies! Very helpful. I have yet to find my “underlying cause”. My neuro says I have some form of dysautonomia and she thinks something auto-immune is coming. I don’t think you just get POTS without a cause so I am hopeful the new neurologist I see soon can give me some answers. My BP tends to be on the high side, usually 112/90. If I am having an attack it goes up to 160/110. I have tried compression stockings but I didn’t see a benefit in them. It’s crazy how we are all so different. Thanks again for all of your input! 

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