MelissaCrystal

On the "Mystery Diagnosis" episode that had orthostatic intolerance, they talked about that sometimes the baby does not get enough oxygen or blood volume to develop properly, and I've read things here and there about POTS causing developmental issues because of the mother's issues with her blood volume and blood pooling. Sometimes POTS patients may starve their baby of the oxygen they need just like when we black out or get dizzy when standing up (we're starving our brains of oxygen). So I think POTS patients have to take natural supplements approved by a doctor to be taken during pregnancy to increase blood volume, make sure the BP is normal, and then the pregnant mother basically has to make sure not to do any activity during the pregnancy to activate a pots episode. My cardiologist told me having a baby would be difficult for me but not impossible. She said it could be dangerous to MY health though and could make heart attack more likely. Plus I'd get dehydrated easier too and would be very high maintenance. I'd have to go off beta-blockers and a bunch of my other meds since they cause development problems in babies as well. She told me that I should go to a POTS specialist during pregnancy and have routine visits to make sure the baby is developing properly and make sure my health doesn't decline. I hope that helps, sorry about your loss. I hope that your doctor is able to help you more on the subject.

You know, I have a mysterious chronic ankle injury as well---and had to wear a cast on it and everything, nothing worked. It's all wobbly right now and doesn't work really well---I roll it often. My "ankle doctor" doesn't know what's wrong with it, he has theories but can't prove any. So we're pretty similar in that aspect I guess. No clue how it'd be related to POTS, but it is funny. I developed the injury right when I got my first POTS symptoms (when puberty started)

Yeah my eye doc says I have very sensitive eyes to stress and strain. He recommends using a special prescription of lenses that balances out how color depth effects your focusing. It's an interesting test he does, I had no clue that lenses can effect how 'strong' colors are on your eyes. So certain webpages may strain your eyes more than they should with regular glasses. I have a special prescription now for the computer and it helps a lot. My eyes feel really relaxed now and I didn't even realize they were stressed before. I started having bad blurry vision and headaches because they'd get tired. Also he recommends taking frequent breaks---and the best "exercise" for your eye is looking long distance every ten minutes to let your eyes relax from looking close-distance. Also eye drops and lubrication help a lot because we forget to blink when looking at the computer screen---it's a common problem people have. When eyes are more dry than normal you can get bad headaches from it without even realizing your eyes are dry. One more thing---try not to use the lightest setting on your monitor for reading. Try to dim the monitor for reading so that it causes less focusing strain on your eye. New monitors these days often have buttons on the side, and the factory settings usually have one for reading and one for video.

There are reply buttons under each post---I see that you accidentally quoted her without replying. You can actually go back and edit that post with your question. The editing options are under your post. If you wanted to reply to the whole topic in general, there is an "add reply" button at the bottom of the page. Avoid hitting "New Topic" because that will create a new thread. I actually had the same question as you before I saw this and I put it in Tessa's thread.

It's a really common trigger----I think for a lot of people it's because your veins dilate which can make you more lightheaded during activity (due to blood pooling). I'm sure there are other reasons too though.

I've been tested for GI ova and parasites, but I don't know if that's the same tests for heart and brain stuff.

Well, maybe your nervous system overcompensates for food digestion and raises your BP? That might be related to dysautonomia, definitely, if not simply for the abnormality in BP fluctuations itself. What have you been eating though? Could be a immune-reaction of some sort.

SSRI's and meds can definitely cause hunger like that all the time, but I also want to add that it could be a symptom that comes and goes. When I wasn't on anything, that was one of my most horrible symptoms of POTS, being hungry ALL the time and having the hunger hurt and growl. It's calmed down a bit for no reason but it often comes back weeks at a time.

Here is a list of my symptoms. There are so many that I haven't added---sometimes they are hard to remember unless I have a bad day...then I'm too tired and feeling bad to update the file, hah. http://docs.google.com/Doc?id=dc639z88_41ggb9fg7m http://docs.google.com/View?docID=dc639z88...evision=_latest (if the top doesn't work)

Regular IB profin seems to work well for me, though I have to kind of wait in agony to get it to kick in. I take 2 or 3, and it works for me. But I've heard that people with very powerful migraines are constantly looking for relief elsewhere. Have you brought it up to your doctor? You may need something more powerful. Often times if I be careful not to strain my eyes or use them too much, it can prevent my headaches from worsening, but I know that's hard to do. My boyfriend on the other hand has a medical marijuana license for chronic headaches, and he takes it in pill-form and edibles--works wonders for him. But we live in San Francisco, so the laws may be different where you live.

These don't sound "weird" to me---they sound typical! I've been clumsy my whole life, and have the scars and dislocated hips to prove it. In fact I fell down 2 sets of stairs (in two different buildings) just 3 days ago. As for the heart pounding, that happens a lot to me in bed. It's very disconcerting, but it happens so often now that I don't freak out about it as much anymore. I used to get scared that I was having a heart attack---which I hope isn't possible at the age of 21. Knock on wood. Good luck with your recovery---I can't imagine how painful that must've been. I've had trouble with both my hips, and that was the most horrible pain I've ever experienced. Be careful with yourself!

Thanks for the great response! It's really interesting that so many things can cause pots---including eating disorders! Didn't know that. I had tons of stress growing up because I had an abusive father, but other than that, no weird viruses or great stress to my physical health. My brother has similar symptoms to me but they don't debilitate him---he's in good shape, though low energy. My other brother has a heart murmur that ended up being where the valve draws in blood because of a quiver, but it hasn't caused him any problems. It'd be interesting if it was genetic. It must be crazy expensive to test for that! Grats to Ernie for having the opportunity to test for that! The downside for me to trying to find the cause is the medical expenses that keep piling up. I have a good insurance, but despite that, things still add up and I'm about 800 in the hole from diagnostic bills. I have no clue how much the MRI will cost. Right now my insurance is being stubborn about approving it, though the doctor says I shouldn't worry about it. Thanks for the insight into your guys' unique cases. It helps a lot---and my doctors are always impressed about how much info I know surrounding this. Hopefully I can help them out even more ;p

Hey guys, I'm new here! It's lovely to find this place. I had been searching the internet for ages about "orthostatic intolerance" but when I discovered the key-words "Postural Orthostatic Tachycardia Syndrome" it led me to a wealth of information that has been helping me and my doctors tons. I've had POTS since I was a little kid, but I was able to manage the symptoms for the most part until college. I couldn't handle it, so about 4 years ago I started getting serious and trying to get a diagnosis. Took me until this past december when I found my cardiologist and she diagnosed me with Orthostatic Hypotension with Tachycardia. It wasn't until I did research on the net that I figured out POTS might be a better diagnosis because I fit like 90% of the typical symptoms (including GI problems, vision, walking, balance, senses, bladder, basically my whole body). I brought it up to my doctor, she agreed with me, and now I am seeing a Neurologist to see if it's something that can be fixed. I'm on a bunch of medications including SSRI's and beta-blockers, and we're going to hold off on Florinef until we get the go from the Neurologist (my physician is nervous about this whole thing since she's never dealt with it before). I'm getting a brain scan (MRI) in a week to rule out problems with my brain. I'm not really sure what she's looking for, but I'll do anything if it means figuring out a way to fix my issues. I realize POTS itself isn't curable, unless the cause of my POTS is something that IS. I was wondering if any of you have worked with doctors to figure out the cause of your POTS or Dysautonomia? Have any of you known anyone who has had POTS and found a deficiency or defect that was reversible? Anyone know if it's impossible to find the cause of my POTS?

Anxiety can make you depressed, definitely. Usually doctors tell me that anxiety is nervousness, constant "stressed out" feeling, really wired, mind constantly running and worrying about things, and you can have anxiety attacks or panic attacks. Depression is a low energy, moodiness, low motivation. For some people, having anxiety can make them very motivated and be almost obsessive compulsive to try to feel less anxious about certain things. Some people in the work force actually like their anxiety. For some people anti-anxiety meds work better than anti-depressants for what they have, but they're pretty similar.

I just wanted to post this in response to Delphic: This is on potsplace.com^ My doctor said even .1 has caused horrible puffiness and swollenness that most of her patients don't want to deal with. She doesn't really want me to go on it. We're trying to substitute high doses of liquorice extract to substitute. Not quite working yet, but we'll see. I was wondering, Delphic, if you knew anyone who is taking more than .5 of Florinef and is happy with the drug? mkoven--the only other things my doctor has warned me about Florinef is that it can cause bad head pressure, migraines, swollen eyeballs, cataracts, glaucoma, and adrenal disorders. She was scared of long term effects because of my young age though---but she didn't specifically say congestive heart failure may occur.

I think it's really common for people who are ill to feel very guilty about it. I think that's my main reason for all my anxiety and depression right now, because I've been depending so much on my boyfriend and I get paranoid about his feelings about it. Guilt is a huge problem for me, but it's very normal in our cases. In my case, my anxiety was driving a lot of my depression, because I'd have these nightly routines of stressing out about my life, and then get really sad and upset. My doctor put me on an anti-anxiety med rather than anti-depressant and I finally feel like it's working. Do you think you're experiencing anxiety and that's why you feel more depressed? That's really funny that you mentioned this^, because I had the same experience on zoloft. It sounds like it's kind of common when I look up people's opinions in google, too.