JaneEyre9

Back in May I could barely walk a couple feet to the bathroom without feeling like i was close to fainting. After months and months of (few) ups and (many, many)downs, i had a major accomplishment tonight! I went to the Hallmark store and stood in line and bought greeting cards. After I came out I was exhausted and dizzy, but SO SO happy!!! I just want to post this to encourage folks. There can be wonderful moments of normalcy that can exist in a POTS world, and i savored this one. I hope that this brings you encouragement, because for several months I have been wondering if i would ever be able to go out in public again! You all have been so instrumental in encouraging me, so I thought you should be the people I tell about my little victory! Also...I got a *free* gift bag because it was a promotional event...I was rewarded for my standing with a snowflake mug, two ornaments, two cards, little notes, and a box of Christmas cards!

Hey Dizzygirl, Not too sure about rib fusion. I don't think it would be out of the question. I was born with an extra rib. My doctor was really alarmed by it at one point during an exam because she thought my liver had hardened, but alas, it was my tiny extra rib. I wonder if you could call an old doctor and ask for old medical records. Maybe that would help you get to the bottom of the mystery. Did the doctor say how or why the ribs would cause your problems? Kristen

Hi Jaquie! I haven't met you before so welcome and hello I certainly do feel worse in busy places. I think, for me, it's for 3 reasons. Usually, I am standing up in the busy place after sitting in a car to get there, so the postural stress starts off the dizziness. Then, like you said, I get stressed/anxious knowing that i'm now in a public place and there is "no turning back" so to speak. I start thinking about not being able to lie down, and I try hard to keep tabs on my symptoms so i don't crash to the floor unexpectedly. And the third thing is that the extra noise is extra stimulation, and therefore makes my brain work that much harder to stay alert and in the moment. We have to filter out the background noise and motion from what we are trying to do. All these things add up to make busy places not so fun. Hope you are able to get some answers from your upcoming tests! I know how stressful it is to think you will go back to work, and then not physically be able to cope. It is very distressing! I hear you! Kristen

Thanks, Michelle...this will help my friends and family understand what is happening to me. It's a lot better than my attempts at explaining things! Kristen

Thank you all so much for encouraging me and helping me to feel not-so-alone. There are so many complex emotional issues that go along with having POTS, and I am slowly sorting through them. I will definitely come back to this thread often and reread your comments. It's true that other people overextend themselves constantly and have no significant health effects. It's also true that POTS helps you to appreciate the simple things in life a lot more. And i have definitely had to squeeze the word "no" out of my mouth a whole lot more. That's a hard word to say for those of us to who like to be everything to everyone...and POTS gives me a lot of opportunities to practice...."nnn....nnn...no" None of us could have prevented this or seen it coming. I like what dizzy dame said...it felt like was i was hit with an invisible truck too. Thanks for the reassurance and empathy. You guys are the best! Kristen

Hi Jan, I'm so sorry to hear that the doctor said such discouraging things. I'll say a prayer for both you and Jeff...for healing and for restored hope. Kristen

I know some of you have had a sudden/unexplained onset of POTS like I did, and somedays I look back on how busy and active I was...constantly on the go, driving everywhere, working hard to meet needs, not sleeping... I start to wonder: If I had slowed down and not pushed myself so much, would this crash still have happened to me? Is this my fault? I know it may seem silly to think like that, but I just wondered if anyone else here feels/has felt the same way... Thanks for the input and support, Kristen

I think a pale grey or white would match most of our faces

Not sure about how to get more fluid, but I think green tea has caffeine in it. Caffeine can cause dehydration and rapid heartbeat, so maybe herbal tea would be better. I tend to stick with water for my hydration. Hope you can get some help from the doctor! Kristen

Hi Terri, Welcome to the forum! Sorry that you have to come here as a fellow member of the terminally dizzy, but glad you found us for support and answers to questions. I've found a lot of comfort here just knowing there are others who understand my problems. Look forward to reading more posts from you. Kristen

That's wonderful, Persephone...It's so therapeutic to write like that. I like the line about the hummingbird. It's also therapeutic for me to read it, so thanks for sharing with us! Kristen

That's no fun at all. I have a virus right now too. It is so hard for POTS people like us to recover from a virus...seems like it just creates more probelms! Hope you feel better soon! Kristen

haha...i like that story! It sounds like the perfect commercial for the bracelets

Hey Melissa, I'm really sorry to hear you're having to fight so many battles just to get through each day....just to do simple things... I sure haven't been in your shoes, but i know that feeling. I'm thinking about you, and I care. Evie brought up a good point about asking a counselor to meet you or maybe even talk to you on the phone. I hope your ears clear up soon...you've had to deal with WAY too many infections lately! You can always call me up if you need a listening ear. Kristen

Welcome to the board! I occassionally feel nauseous if i exercise too hard. I was told during my stress test that that can happen if you are breathing super hard and swallowing air into your stomach. I know my dad (who is perfectly healthy) has felt nauseous after heavy exercise too...same with a (healthy) good friend of mine. As for the salt tabs, I also prefer to use the real thing rather than the tabs. I love salt and hate the thought of swallowing big tablets Glad you found this board for support! kristen

Wanted to add that I eat Chipotle burritos too....in one burrito I get 3,000mg of sodium! Of course, I can't do that everyday because of the calories (and sometimes IBS troubles), but on a day when i feel really POTSy, one of these burritos can give me a boost. Kristen

Hey Nina, Just wanted to say that i'm sorry you're still having sinus problems...and with midterms on top of it! Hope you start to feel better! Glad you had some chocolate Also, I'm really curious to look at your bracelets! Could you send me the link? Kristen

I have to say my favorite salt boost comes from lunch meat. For me, Subway is the way to go. Kristen

Hi Amy, Glad you had a good trip. Dr. Fouad prescribed cardiac rehab for me too. It has been a really good experience. I'm finishing my second month of it right now. It is controlled exercise with monitoring of heart rate and BP. The physiologists are really kind where i go and make up creative ways to help me feel better when i exercise. I have improved, but have backslides when i get around my period. It's nice to have people document my ups and downs so that i have some proof! When doctors see you on just one day, they only get a snapshot of how you are really doing. It's great to go to a place every week that can see your progress and make suggestions to help. Also, the activity is confidence building! Good luck! Kristen

That's wonderful that you made it through the wedding, plane trip, etc! What an encouragement! I think what you said is great...we really do give thanks for the little things. When i can put a dishwasher full of dishes away, or even sit up at a "real" restaurant, it makes me so happy...truly makes me grateful for the simple things. Kristen

Hey Melissa, Sorry to hear about your rough time recently. That's horrible that they let you walk to the bathroom all by yourself!! I still think about you lots. I've been having a hard time too. Narrowly avoided an ER visit myself last weekend, thank goodness! I hope you can get some help for your new symptoms. Is your doctor in Toledo able to help at all? Kristen

Not sure if this is why, but Florinef increases excretion of calcium. Maybe that is a connection. Kristen

Dear Pooh, I empathize with what you are feeling. My grandpa has been seriously ill for almost 6 years and was very close to death last week (stopped eating, talking, unable to move himself), then pulled up a little bit. I've been waiting for "that call." I was very close with my grandpa, so i know how hard this time is for you. It's going to be hard on you, that's pretty unavoidable, but just try to rest as much as possible, and keep your mind focused on him being at peace. There's no way around grieving for those we love. Sorry you're going through this. I'll definitely be thinking about you and say a prayer for you. Kristen

sorry you're still not feeling good, Nina. It really stinks that you have to choose either joint pain or bowel problems...that balance of medications must be so hard. Kristen

Pooh-- sounds like your encouragement through the cards to the shut-ins is extremely valuable work. I also think that your presence here brightens the days of many people. (especially with your poetry ) I find it hard sometimes to feel I am making a difference from lying on a bed or a couch, but when i hear the things that you and others are doing to make a difference in other people's lives, it makes me realize that though there may be limits on where we can travel physically, there are no limits on the difference we can make in the lives of others. thanks for sharing! Kristen