SoliDeoGloria

Thanks everyone for all of the thoughts and advice! No, I have not been checked for porphyria or mastocytosis. I'll certainly be discussing that with my doctor. I was tested for lupus three years ago. My ana levels were normal. I'm assuming this means I can rule out anything autoimmune, right? I've been supplementing with Vit. D but I don't know if I'm taking too much or too little, so I guess I should have that checked too. I've been desperately trying to come up to speed with all of you knowledgeable people. I was a Biology major in college, but that seems like ages ago and my knowledge of physiology is pretty rusty now. I think that Potluck has brought up some interesting points. I have often wondered if the sunlight is triggering a NE response that is antagonizing my situation. I have also wondered about the connection with my eyes. I have transition lenses on my glasses because the light not only bothers my eyes (which are blue and very sensitive), but it also seems to add to my overall symptoms. Also, when I'm having a bad POTS day, the first thing I do is lay down and put a dark towel over my eyes. Potluck, could you post the link to the article you mentioned?

I've had a gradual onset of POTS symptoms over the years, and I believe I may fit into the catagory of hyperPOTS (although untested) based on my bp and hr readings. Along with the POTS symptoms, I've always had a negative reaction to sunlight that has worsened as my POTS symptoms have progressed. For starters, my whole body feels like electricity is running through it as soon as the early morning sunlight comes in my bedroom window. And if I spend any amount of time in direct sunlight during the day, I feel sick, have lots of joint/muscle/bone(?) pain, hr goes way up, bp drops a little, pulse pressure narrows quite a bit. I'm careful about hydrating, so I don't think that's the issue. And I just barely started taking meds (I'm on propanolol) so it's not a side effect of that. On rainy/cloudy days I feel much better than on sunny days. My POTS symptoms have always been worse in the spring/summer/fall and waned each winter. Although I can get the same bad reaction if I go out on a very bright,cold winter day with lots of reflection off of the snow. I live in northern new england so it's not too hot here and the sun is not extremely intense; but still the sunlight affects me. At times I have also gotten a violent reflux reaction and hives from being in the sun. Also, my skin feels like it's burning if I'm in the sun for just 10 minutes. I worry about missing out on Vit.D benefits because I'm avoiding the sun most of the time. Is this a part of POTS or is this something else?

I have a polar hr monitor with a cheststrap. I LOVE it because it suits my personality. I'm the type that will push until I crash. I'm very goal oriented and that has gotten me into a lot of trouble with my health issues. I set a "workout" zone on my heartrate monitor. It automatically beeps (a sweet bird-like chirp) when I'm at the upper limit of my heartrate setting. This helps me to know when I'm pushing too hard and reminds me to take a break and lay down. Knowing that it will beep automatically when I'm getting too tachy gives me the freedom to not get obsessed with checking it all the time. The point is to get something that will not be distracting or counterproductive to your individual situation. Sorry I don't know the answers to rest of your questions but best wishes in your search!

I need to do some extensive traveling to a family event in the near future. I think the overall airtime will be 12+ hours. I haven't flown in over a decade and I didn't have noticeable symptoms at that point in my life. So hubby and I are concerned about the effect this may have on my health. I'm taking a guess that most of my symptoms stem from blood pooling and low blood volume. And any kind of stress (physical or emotional) seems to intensify my symptoms. I'm hoping to have compression hose by then and I plan to hydrate well (am I allowed to take drinks onto the plane or should I try to find some gatorade powder?). It may be hard to elevate my legs or recline the seat because we have to go economy. Hubby is worried about the aftereffects of sitting for so long and then the stress of jet lag (lack of sleep is very bad for me). I'm also concerned about not causing a scene with the relatives. I don't want my illness to make them uncomfortable or spoil their fun. So I'll do anything to be healthy and happy. I'd really appreciate some advice about flying and/or jet lag.

What firewatcher said makes sense. I had discovered this same pattern about a year ago. I run a little, walk a little, and do pilates a little. Pilates doesn't make me dizzy. But I noticed that on the days when I ran or walked, I felt dizzy afterwards. Instinctively, I started doing my post-workout stretching while laying down instead of while standing or sitting. When I end my workout and stop moving, it feels as if there is a sudden pooling in my lower half. I think that the movement of my body (skeletal pump) helped my heart to pump my blood while I was working out, and as soon as I stopped, my heart was on its own, with the added stress of having dilated vessels. I have no idea what is going on with my blood pressure, but I wear a heart rate monitor and my post-workout heartrate is sometimes much higher than it was when I was working out. There is one thing that I can't figure out though. Why would I get more dizzy from walking (dizzy during the latter half of the walk as well as afterward) than running?

I appreciate all of you more than words can tell. This forum is a gold mine of information and encouragement. Thanks for the warm welcome. Hopefully, if I'm not too sick or too busy, you'll be hearing from me.

I just want to start by saying that I have already benefited from this forum in countless ways. I have been reading the posts for about a year. I have laughed and cried with all of you. I have been informed, educated, and encouraged. You are all rare gems that do a valuable service that goes way beyond what you may think. You make a difference! My personal story is very long. I will have to abbreviate it. Basically, I believe I have had some (mild) symptoms of POTS since my teen years. The symptoms became more noticeable about 10 years ago. Then, about 5 years ago, I fell down some steps and injured my back and ribs and I was pretty much bedridden for about 2 months. I gradually got better, but I had very debilitating POTS symptoms each summer. I went to my doctor many times for answers. She did every test she could think of, but she eventually said she couldn't help me. At this point the symptoms started appearing in the spring, fall, and winter as well. I saw a few specialists and they couldn't figure out my symptoms either. I was so frustrated that I prayed for God to give me answers (embarrassed, to say the least, to use God as a last resort). The next day I happened upon a web site which mentioned POTS. I couldn't believe my eyes -- all of my symptoms were listed under this thing called POTS. I printed out some information for my doctor and that got the ball rolling. I saw a neurologist in December who did a poor man's tilt table test -- which just confirmed all of the BP and heartrate readings I had been recording over the past year. However, the neurologist never followed up on the diagnosis and my PCP was "burned out". I tried to switch to a new PCP and that was a disaster because the doctor thought that all of my symptoms were due to depression (she didn't know anything about POTS). I thought I had hit yet another road block, but just this week I went to see my "old" doctor that I had before we moved. It's a haul to see him, but he is knowledgeable, and willing to learn more, and eager to help. So I guess I'll just have to get used to the car rides, because it's worth it for me to have an advocate. Also, I have an appointment in July with Dr. Anna Hohler in Boston. I was hoping to get in with Peter Novak, but he's scheduling really far out. I haven't posted yet because I spend most of my unsick time doing things with/for my family. I usually only get a few minutes in the evening to look at things on my computer. I have good days and bad days. On good days I try to act like a "normal" mom (but even on good days I have limitations). On bad days I am on the couch unable to do anything (can't even hold a book to read, can't type on my laptop, etc.). I have a sweetheart of a hubby and six awesome children (ranging in age from 12 to 23). I have no complaints, really. My husband and children are totally understanding and compassionate. They all help with the cooking, shopping, and cleaning. I have tons of unanswered questions -- but don't we all? Blessings, Gloria