JaneEyre9

Daniel, We are not here to judge you...just to offer support for a tough illness and the situations that come along with it. From personal experience, I know that i feel sickest when i am anxious about a situation. Try to take some deep breaths and focus your attention on something else for a while. Some herb tea might help, like Laura said. The worst thing you can do for your health is to worry. Mental focus has a big effect on your physical well being. Kristen

Hi Rita, I went through the same dilemma as you a couple months ago. I decided the only way for me to see what would happen was to try it. In my opinion, it is different for everyone. I did not react well to it and as soon as that happened, i just stopped taking it and after having another period, my body went back to normal. I had both POTS related and non-POTS symptoms. My dizziness and feelings of disorientation were much worse. I had VERY bad mood swings (my poor mom can attest to that). And ultimately I ended up being sick to my stomach. That may not sound like it was worth it when you look at the symptoms, but i have to say honestly that i'm really glad i tried it so that i can rule it out for good. Before I tried it, i would just keep wondering if i was not taking something that could really help me. I know Sunfish has had a great experience with it, and it has helped her a lot, so I say go for it. Realize you might not react well, but give it a shot. The worst that can happen is that you have to stop. As for the brand, i was on a different kind of pill than what you will be taking. It was just one hormone level...not the different cycles of hormones like Ortho. Oh, most importantly, if you want to decrease your chances of nausea, it's best to take the pill at night. My friend who was on Ortho told me and i'm really glad she did it, because it's something the doctor told me after the fact. Good luck! I sure hope it helps you. I would love to get rid of the POTS/period days every month! Kristen

Well, i just got back from my doctor visit. She could see i was in much more distress this time than i was last week. When i told her about the pain in my back and right shoulder she said it sounded like classic gallbladder inflamation. She said it could be inflamed without me having stones, which we all know. When she brought up having a CT scan, i felt she was on the right track, but i didn't want to draw this out any longer, so i asked about the HIDA scan with CCK. She smiled and said that that would be a good test and she even had the receptionist call to set up an appointment for me as soon as possible. She was going to have me get a CT scan today, but decided to hold off till after the HIDA. I'm relieved because I'm pretty sure i would have been sick after taking the barium. It's hard for me to even drink large amounts of water right now, much less barium. Anyway, that's where things are right now, and I am sure "giving thanks" that i have a doctor who is on top of this and that i didn't have barium for lunch! Thank you Emily and Nina for your kind words, encouragement, and education. Without your help and posts, i would have been hesitant to suggest this HIDA scan to my doctor. Kristen

Thank you so much for the encouraging words. Emily, I read your ordeal in detail last night...what a nightmare! I'm so glad that you advocated for yourself and insisted on answers. I cannot believe the way you were treated by some doctors. In terms of gastro symptoms: Are you able to eat normally now? Can you eat fatty foods like french fries? Right now I'm not eating much, and when i do, it cannot have fat in it. I have very little appetite, but at least i'm able to eat some fruit and drink some gatorade. I had some bloodwork done today and will see my dr. again tomorrow. I'm so frustrated that this is happening around Thanksgiving because i seriously love to eat!! Sometimes i get really scared that i won't be able to eat normally again. This all happened rather suddenly so i'm sort of still in shock. Anyway, I really hope i don't have to have surgery. Does anyone know of non-surgery treatments for gallbladder? Do they work? Thanks again for the support. I'm so grateful for it. Kristen PS- Rachel, do you have to take Questran before every meal? Is it an anti-nausea med? Can you eat normally now?

Hi Jennifer, I thought this too at first, but i think that as long as you're not wearing them day and night constantly for months at a time that you'll be safe. You only really need to wear them during the day when you are upright. I have found that they help me a lot, especially when I'm in rehab. I asked Dr. Fouad's nurse how to avoid dizziness if i take them off and then get directly into the shower. She suggested removing the stockings while lying down and drinking some fluids before getting into the shower. Usually I try to take them off and keep my feet up for a few minutes before i walk around without them. Hope they help you like they did me! Kristen

The thing with POTS is that there are always ups and downs, so when I feel down, i just try to look forward to a time when my body will be "up" again. When i get those precious moments, i try to savor them. It's tough living with this. It's very unpredictable and debilitating. Mentally it's so difficult because we cannot do all the things we want to do. I hope that you have a better day soon. Kristen

Good luck, Evie....It's so awful to take exams when you're sick. it diverts all your attention from the material onto how you're feeling. I know exactly how that feels. For a quick fix, i would go with ginger ale and some Kaopectate for the diarrhea. I used to say i was going to marry the man who invented Kaopectate because it helped me get through my first semester at college when i was sick non-stop. Let us know how you're doing. And remember, if you feel you can't focus on the test, you can always ask to take it another time when you feel better. I know we all hate to do that and make a hassle by putting things off, but sometimes it's a lot better to do it later if the body is being rebellious! Good luck, Kristen

Could the flu like symptoms possibly be related to your environment? If you experience them only in one place (like only at home or only at work), then it's possible they are due to problems in the air (chemicals, mold, allergens, etc.) This was the case for me a number of years ago. Kristen

I don't know the answer to your question, but you may want to look up the drugs you are taking on www.rxlist.com I use that site to see if my drugs have specific side effects. Also you might want to check the patient advisory leaflets that come with your prescriptions. Good luck, Kristen

Wow, he sounds great! Where does he practice? Glad you are being taken seriously by him. We all deserve that! Kristen

Hi Belinda, Welcome to the board! I'm also a fellow Clevelander. My testing was done by Dr. Fouad in May. I hope you can find the answers you are looking for from your tests. I know you will find great info and support on this board. The people here are so helpful. Kristen

Thanks for all the replies and votes. It's taken me a while to come back and respond because my symptoms got worse. I'm now really nauseous after eating anything with fat in it. -Dawg Tired, why/how does apple juice work to relieve symptoms? -Sunfish..I had an ultrasound, but they told me it was "normal." Do you think the Hyda scan would add more info even after an ultrasound? I know there is something very wrong. They just haven't been able to find it yet! -lizzy, sorry to hear that you don't feel better after the operation. that must be so frustrating! Thanks again for voting. I've been doing a lot of reading about the gallbladder recently, and it's interesting to link that with your personal experiences. Kristen

If I'm super cold and really want to take a bath, sometimes i run warm water and then stick my legs out onto the edge of the tub to elevate them and avoid over heating. Then when i get out i "take my consequences" so to speak and lie flat on the bed till i feel better. This isn't good if i'm really symptomatic, but can be a nice treat on a "good day." Kristen

Good luck with the testing, Jacquie! When is the tilt table scheduled?

Hi Jessica! My name is Kristen. I'm 24 with POTS...it's really tough to be young and sick, but there are great people here to support you so you don't feel so alone! Welcome to the board, Kristen

I'm having pain in my right side and my back along with digestive problems (and yes i'm being seen by a doctor about it). After doing a search, I was amazed by how many people here have had gallbladder problems. How many of you are living well without a gallbladder? How many have dealt with mild side effects and not had surgery?

Morgan..so glad to read the good news about your doc. we really need people who believe in us, and i'm glad you have that! Kristen

Way to go, Lauren! That is so exciting! I'm looking forward to reading it. Kristen

I know just what you mean about the medicine. I was on a dose that kept my heart rate at 65, but i felt better on less med when my resting heart rate is 80. Go figure. Sometimes the side effects are worse than the actual symptom they are trying to treat! Kristen

Hi Pooh, You're right; that program sounds really exhausting! I'm currently in my third month of cardiac rehab at the cleveland clinic. Ernie's right, it is sometimes tough to get there, but if you have someone who can help you, i'd say it's totally worth it. My program is only 3 times a week (an hour each time...though i don't exercise for an hour). I am on a heart monitor the entire time, and they check my BP at least 3 times (beginning, middle and end) and more times if i seem to be having a "problem." I also "rate my dizziness" for them so they know how bad i'm feeling through out. If i start to feel like i can't continue, i simply stop and lie down. Even if i don't have any specific problem, i always have to lie down when i'm done walking. Recently they have added some light leg weights which i think have been really helpful. I want to emphasize that a good program will encourage you to do only what your symptoms will allow. Some days i'm able to do a lot more than others. It's really great that i am not pushed. Also, i felt better on the treadmill than on the stationary bike, so they never forced me to do the bike again. I've always been glad that I could have a say in my program. PM me if you have any more questions...i'd be happy to tell you more. Kristen

I'm going to chime in with a very enthusiastic "same here"! I've always had cold hands and feet for as long as i can remember. It doesn't bother me too much, but if i touch someone with my feet or hands, they usually remind me with some sort of shocked exclamation. Also, at work, I would always have to bring in a sweatshirt (year round) because i was freezing and everyone else was fine. I also feel tired after doing simple things, but some days I can do more than others. Kristen

Thank you all so much for the positive feedback! I got so carried away that i went to Border's tonight!! (Granted, there are more places to sit in there, and i definitely took advantage of that...but it was such a "normal" thing to do!!!) At this rate, I'm going to spend way too much money. I think it was safer for my bank account when i was home in bed all the time. Anyway, i don't want to overdo it, so i'm going to take it easy this weekend. But man, my sunken spirit sure got a huge lift from all this semi-normal-ness. Can't wait for the day when i can actually drive myself to the store again. Jan...you made me crack up about the prizes at the grocery store check out counter. I think we should actually get any groceries free that we can walk out with...hahaha. Just as an aside, does anyone ever feel nervous about going out in public for fear of seeing people you know and them thinking you are "faking it"? I kept looking over my shoulder tonight!!!

I don't think it was a waste of time for you to go to Cleveland since you were able to get some concrete answers and rule things out. It may just take some time to get someone who will help you follow through on treatment. I can understand how you would feel discouraged with a doc who didn't even care to look at your file!! I thought that after going to the clinic and getting diagnosed that i was home free and ready to get better, but to be honest, the best thing for me has been rest, exercise, and less stress. I understand that not working or working less is a real blow emotionally (and financially), but it was what I needed to start healing. I hope that you are able to work with your primamry or another doctor to get started on cardiac rehab. I think it's definitely helped me. Kristen

Way to go, Jan!!! A stress test alone is hard, not to mention the injections and pictures...what an accomplishment! I hope the test can give you some answers. Thanks for giving me a smile this afternoon Kristen

Those are great! They made me laugh...very creative. I think I will try them Kristen