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About nmorgen

  • Rank
    Advanced Member
  • Birthday 02/18/1975

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  • Gender
  • Location
    Gland Switzerland
  • Interests
    I love to read and collect books. I used to love swimming, tennis, horseback riding, walks and gardening. I don't get to do much of those anymore.

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About Me

I am beginning to rethink my POTS. I originally thought this all started in Dec 2007. I rode The Mummy at Universal and was slammed against the seat. I started feeling really bad. Couldn't catch my breathe and very light headed. I went to the ER and they thought I had a blood clot as my oxygen levels kept falling and I had a high d-dimer. A month or so later everytime I stood up I felt like I was in a tunnel, my vision and hearing were off. The ENT thought it was blood flow to the brain and so I saw 3 different neuros. My internist suggested POTS and 1 of my neuros did a poor mans tilt table. He said that I was symptomatic for POTS and started me on bb. The bb really messed with my asthma and I coud no longer take it. They did put me on an angiotensin and calcium channel blocker. After I started the cb I started to get tremors. I thought it was the cb itself, b/c one of the side effects was Parkinson like tremors. I stopped taking it. Everytime I stood up I felt horrible. I would take my blood pressure and it was usually sky high. The worst was 176/158 with 180 pulse. My cardiologist told me it must be a bad reading b/c my pulse pressure was too narrow. I told him that it was almost always narrow when I felt bad. I finally got the tilt table test done and was told that I had hyperadrenergic POTS with a narrowing pulse pressure. I was started on clonidine. Which does help. My normal pulse pressure is 25-30, but the clonidine has increased it to about 30. Which feels much better. I still have the spikes in pulse and blood pressure problems, but the clonidine has made them non life threatening now.

The rethinking is b/c I can remember when I was a teenager I would get very lightheaded and almost pass out. My internist at the time said it was b/c I had a regurgitating heart valve. My blood pressure was really low and I needed to increase my salt intake and drink a lot more water. It helped. When I would start to feel bad I would eat something very salty or just eat salt. I always carried around little packages of salt just in case.

When I was 12 I had scoliosis surgery. After the surgery I was always light headed and dizzy. I just always thought it was from the surgery and blood loss. It never really went away. I can remember having to give blood every month before the surgery and I would pass out after they took my blood.

In my twenties I noticed that my heart would race sometimes. I didn't even remember this until recently when I really started to think back, but when I did physical exercise i always had to be careful b/c my heart would sometimes race. I didnt really think much of it. I can remember me laying down and my husband checking my pulse until it slowed down. I can also remember being very active, but having times when I was doing something like mtn biking and getting dizzy and throwing up. I can also remember after a long week going to college that I would be too tired to do very much on the weekend. I just wanted to lie in bed and watch tv. It's funny that I never really thought much of this. I can remember cases of brain fog. I couldn't recall simple things or names. I can also remember going to school at UAB and watching my vision blurr as I was trying to read a sign. Everything looked really foggy.

As I got older my blood pressure obviously increased and I think that is when I started to have the bad problems. Or at least it felt worse. In reality I have probably had POTS most of my life.

I know some of this will not be in order or might not make sense, but I will got back and reread it and check it at some later date. I just started thinking about things and what my life was really like before POTS. Where there any signs or symptoms. There were. I hadn't even realized it. I guess the best thing hat helped me along the way was my internist suggesting I eat a lot of salt and drinking a lot of water. That is on regime that I have always had and it might be why I have been able to lead a relatively normal life up to my crash.

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