Hummingbird

Fascinating topic! I just got my 23andme results back about a week ago and was doing a Google search about POTS/NET when I came across your posts. I tested for very high standing norepinephrine, so was interested in this. Would be interested in finding out more!

Hello I saw the documentary "Fat, Sick and Nearly Dead" and was so inspired by it that I decided to start juicing. I have been juicing (1-2 drinks/day) for about three weeks now. I have been unable to work for over a year now. I am hoping that juicing will help turn things around. Has anyone had DRASTIC results from juicing?

Kayla, I live in Raleigh, NC. Who do you see at Duke? Do you like your doctor? I see a Cardiologist in Raleigh. He wants to refer me to Grubb or Vanderbilt. I have also applied for SSDI. I was denied, then appealed and denied. Awaiting another appeal.

Sounds like I am in a similar boat as several of you. I am 41 and was working an as RN up until March 2011 when my POTS symptoms worsened dramatically and I became unable to work. I am currently on LTD. My initial SSDI claim was denied, as was my appeal. I am waiting to appeal again. It has been one of the most difficult years of my life. Besides my faith, one of the best things that has helped me is being able to talk to others with POTS that understand my symptoms and can relate.

My cardiologist says he is out of options to treat my case and is going to be referring me to either Dr Grubb or Vanderbilt Outpatient Clinic. Can you share your experiences? I am currently on long-term disability, trying to get SSDI. It has been a very frustrating road. I'm hoping a good referral will help and offer answers. Any info appreciated!

Lieze, I can relate SO much to your post. I am also an RN and just lost my job due to exhausting my medical leave from POTS. I am currently on long-term disability and about to apply for SSDI. It has been a very trying time. I would love to talk further with you!!! -Lauren

Lieze, I can relate SO much to your post. I am also an RN and just lost my job due to exhausting my medical leave from POTS. I am currently on long-term disability and about to apply for SSDI. It has been a very trying time. I would love to talk further with you!!! -Lauren

Hello, Lately I have been having what I call "adrenaline surges" where I will feel very stressed out for NO reason. I will have tachycardia, sweating and feel very "fight or flight." These are not panic attacks, but almost an exaggerated stress response. I'm sure this is part of my POTS but it has gotten worse lately. I take a beta blocker, Florinef and Klonopin. This combo helps, but not enough. I'm going to schedule an appt with my Cardiologist. Does anyone else have this issue? What seems to help you the most?

I was diagnosed with shingles and prescribed anti-virals, but am still having a difficult time recovering. I am continuing to get breakouts. Has anyone struggled with shingles? Please tell me what helped you heal. Does POTS interfere with the immune system? I normally recover from illnesses ok, but the doctors are baffled by my continuing breakouts. Advice/opinions appreciated!!!

Cardiologist wants me to try Verapamil. My BP runs low and HR high. Has anyone had any luck with this? Any info appreciated!!!

Thanks for the replies! I had to go off Bystolic. Couldn't tolerate the side effects and it wasn't controlling my heart rate. Cardiologist wants me to try Verapamil next.

My BP always runs on the lower side, while my heart rate is high a good majority of the time. A little over a year ago my cardiologist put me on Zebeta (bisoprolol) and Florinef. The combo did wonders for me. Recently the Zebeta stopped controlling my tachycardia and anxiety ("adrenaline surges"). He has switched me to Bystolic. Anyone have any luck with this?

Did you ever find a physician in NC? If so, who did you see? I am in Raleigh, NC and am looking for a knowledgeable physician.

Just wondering if anyone takes Valtrex for cold sores? If so, does it worsen your POTS?

Has anyone ever tried Provigil for fatigue/tiredness? My doctor prescribed Ritalin and Vyvanse in the past and I find these can be helpful, but increase my fatigue when they wear off. Experiences/opinions appreciated!