steph37822

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Yeah for Biofreeze! My family dr. also talked about the importance of getting pain meds in as soon as pain starts, and not while it's already set in, as it has a much better chance at working. It's so hard for me to remember all these drugs anyway, I only take 3, which is far less than most of you, but my brain in not equipped to tell me what to take and when! About this "retail therapy" sometimes I've found a new pair of shoes or a new DVD just does the trick as well! Me being the youngest of 3 girls, the term "spoiled brat" has been used more than once. So, living up to my name, if I really wanted stuff in my younger POTS years I'd go shopping with mom and dad and pick something, or many somethings out, and exclaim "OH my heart, my brain, I FEEL them getting weaker by the minute!" usually brought on enough laughs to get me what I wanted.........you gotta do what you gotta do!! Take Care All, -Steph

Well Morgan that is certainly a good story to read! Yes, all the way down to the poodle, do you think he handles insurance paperwork? I am a bit shocked myself to learn you haven't taken any POTS drugs, your docs really ARE in the stone age aren't they?! I so hope this guy finds SOMETHING, ANYTHING on your testing that gives him a reason to want to investigate, or treat you further. Every now and again we seem to find a doctor that seemed to have paid attention in med school! Still thinking about you, and your family.......as for your son and his non-weight bearing foot, as someone who spent 7.5 of the last 12 months in casts, I can relate, it's so much harder when it's hot! But I hope he heals up decently! Again, thanks for the update, please try it again sometime when you feel up to it with more news from your docs AUDREY! Take Care -Steph

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Hi Katherine, sounds exactly like what I've been dealing with the last 7 years on and off (as long as I've had POTS), and much more frequently the last 11 months. So I hope I can help your neighbor, it sounds to me like she possibly has Cyclic Vomiting Syndrome, info can be found here http://www.cvsaonline.org/index.html I was finally diagnosed at the end of May, and it was like the clouds parted and the sun started shining again to know that there was a REAL physiological reason why my body continues to make me vomit and why I'm nauseous almost 24 hours a day! I know what it's like to not have answers, and to know there's a reason I feel so sick, but not have a clue why! Doctors think these episodes are actually abdominal migraines, blood stops going to the stomach for whatever reason. And the fact that you say her son is a migraine sufferer adds to my belief that this is what the problem could be. Also when you say these episodes happen in the mornings, for me they happen during the middle of the night, or right when I wake up. That is a classic sign of CVS, though few doctors recognize it. There is no diagnostic test for CVS, you you just have to meet a knowledgable dr. willing to really listen to the patient, and dismiss all stereotypes. (e.g. since I am so thin to begin with, most doctors automatically assumed I was throwing up on purpose as well ). With the exception of GERD, I had a thorough GI work-up 2 years ago when I started throwing up more frequently, and lost a lot of weight as well, and everything came out normal. I would highly suggest she get to a headache specialist neurologist. And I would suggest before that appt. she start keeping a diary of her "episodes" as well as a migraine diary, if she also has "classic" migraines. A sample diary can be found on the CVSA site. She should write down when these episodes happen, how long they last, what she does to stop them (if anything) she may be able to identify certain triggers. There is no cure for CVS, but many people can be controlled by preventative migraine medications. I am trying those medications now. I am also reliant upon Zofran to control my constant nausea. It's been a total Godsend to me. There is a lot of info on the CVS site, suggestions for how to get through episodes, why they happen in the first place. (and yes, Dr. Grubb told me CVS runs along the lines of dysautonomia, for me already having POTS it's easy to see the connection, hers might be harder to find, if she does have CVS). If she'd ever like to to email me, you can give her my address, I think you have it from dinet photos. Take Care, good luck to all of you. -Steph

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Hi Jan, you and Jeff are constantly in my thoughts and prayers and will continue to be. You seem to have found several ways to cope, and make it through the days, which I think is just fantastic. I understand the depression, but I credit both of you for pushing through this. I think hiring the cleaning person is such a great idea, should be a big help for you, and the cost will be well worth it. I bet you did feel great the day everyone was working in and around your house! As for your search engine issue, I was a business broker 2 years ago in a very small firm, so our website wouldn't make it to the larger search engines for a few years either, one site I registered with was overture.com.....it's fairly cheap, you actually set your own rates for keywords you want associated with your website, and it's like a bid for position website......it was great! You pay for keywords, and those keywords will put your website up higher on the top search engines. --for example, you pay $0.15 (per click) for people who do a search on puzzles, and if 15 cents is in a high position on overture, then your website will probably be on the first page of yahoo search--lower than major companies who sell puzzles, but much higher than people who either pay less than you, or don't pay at all. You can put as much or as little as you want, and I actually found it pretty fun, it's just a way to get noticed faster than waiting on search engines to pick you up, and they have a great keyword suggestion tool which takes some of the work off your brain! you also set you own rates for different keywords so more important words like puzzles, you'd want to pay more per click, less important, less $ per click...... It's been 2 years since I've used it, and yahoo bought it, but I doubt much has changed, and if it has, I will research it. If you do check it out, and want any help, or have any questions, feel free to contact me. Please take care, take each day as it comes. Thanks for keeping us updated, I really appreciate it. -Stephanie

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