wareagle

Okay..I've been trying to figure this out for awhile and since there's been so much discussion on BB's I figured I'd go ahead and ask. I remember awhile ago Nina mentioned "functional tachacardia" which I thought was a great term. My understanding is that my HR increases in response to blood pooling into my abdomen..the heart has to work harder to pump it back up to our brains..thus preventing..in some cases..fainting. A BB prevents your heart rate from rising..as I understand it..soooo wouldn't it prevent your heart from compensating with the increased HR and cause increased fainting ect? I guess my main question is..what benifit do BB have on POTS patients? I know a lot of you use them and have had success..but I don't understand how? Or..are there different "types" of POTS? I know my doc. has said "florrid" POTS but I've never asked him what that means." I would ask him..but it's all I can do to focus on discussing my symptoms when I see him..I usually don't have to energy to talk about other things! Thanks for any input..like I said I was just curious.

Ditto to everything already said!! This site is amazing..so Thanks again to Michelle, Em, and everyone else that makes this forum work!! You all bring hope into my little world everyday!! michele

Hi Army..first of all congratulations on your little boy!! I used to live in TX several years ago before becoming ill..so I don't know any specific docs. other than those listed on the physcians list. Where is Ft.Hood again..I can't remember what area you're close to. My suggestion would be to look at the major cities around you and find the med. schools and major hospitals..ie. UT in Galveston has a med.center..as well as the one in Dallas. Houston has several major medical centers..ect. You may want to focus on neurologists or cardiologists when hunting for a doc. that's familiar with POTS. Before I found my doctor I was told to look at med. schools first..they're always up on the "newest" research and tend to know about "rare" conditions more. If no luck with that then I'd do what Nina suggested...educated the docs. around you..perhaps they could contact the specialists on the board and co-treat you if you don't live near the Dallas area. Good luck..I know how hard it is to find a good doctor...Congrats again on your baby!! michele

Jan, I just wanted to add to the list of continued prayers...I'm so glad to hear that there has been progress with Jeff's treatment..have fun shoe shopping! I always got a new pair of cowboy boots every year...I lived in Louisiana at the time..guess I always knew I was a texan at heart!

Hey dizzy..sorry you had such a horrible few days! It must be scary living alone with this illness..it got me thinking of those commercials I see for senior citizens that have electronic montiors that can call for help. You know like those "life alerts" and I think ADT has a monitoring service now..you just wear a pendent or bracelet and if you need medical attention you push the button. I haven't done any research so I don't know the cost or really much about it..just thought it might be something that you could look into..maybe it would help you to feel more secure? As for your boyfriend..I won't say too much as I don't know anything about your relationship..but as Mel said..I remember that he has not been supportive of you in the past...I wonder if he's someone that's willing to understand your condition and be supportive..and if not...what exactly does he bring to your life? I hope I didn't overstep your bounderies...just worried about you! Hope you get some much needed rest and peace soon!

Hey Emily..I've been thinking of all the books I wanted to suggests to you..I'll give you a couple here then I'll send you a PM when I get them all down! I like all sorts of books..but recently I tend to go for the "fluff" and "funny" instead of cerebral stuff. You should definately check out Janet Evanovich and her number series staring the character Stephanie Plum..they're a hoot.. You may also like Charlaine Harris's Sookie Stackhouse series..it has vampires ect. but it's much lighter than say Anne Rice. Okay..one more then I'll stop for now..have you ever read Jean Auel's prehistoric series?..Clan of the Cave Bear..Valley of Horses..ect? It's a great series and should be great on tape. Alright..that's it for now..I'll send you more suggestions later if you want..and when you feel up to it send me some of your favorites..I'm always looking for a good book! Take care michele

Hi Michelle..way to go the brochures look terrific! I would be happy to mail brochures to members...I'm homebound and in bed most of the day..but I'm able to do some things..crochet, read, ect. I think I could handle addressing and stuffing envelopes. Is the task going to be more demanding than that? If you still need a volunteer please shoot me a message with the specifics..then I'll know for sure if I'm up to the task! Thanks again for all that you do!!! Michele

Congrats Nina!! Enjoy those 2 weeks off..you've earned them!

Oh Morgan...ahhhhhhh!!! Okay..here's an idea for a book...we can donate all the proceeds to DINET..let's all compile or horror stories involving the medical community. We can have a chapter on the ER..a chapter on disability docs....so called "specialists" ..ect. We'll make it required reading for all pre-med students...I'm telling you guys..we could make a fortune!! I bet Oprah would talk to us then ! Love to you all..heres hoping all of our "tension headaches" disappear soon!

You are in my thoughts and prayers ! Keep us posted on your recovery.

Sophia, I'm sorry I don't have any advice..I just wanted to let you know that I admire your strength and determination in dealing with all the issues that have been thrown at you lately...you seem like a real fighter..your mother is lucky to have you in her corner.

Hi all..man there are a lot of new names posting..feel like I'm sooo out of the loop! I was wondering if any of you have had success with diet programs like weight watchers..nutrisystem..jenny craig..ect? I became extremely thin when I first became ill 2 yrs. ago..then after a year the weight started coming on like a vengence..now I'm chubby..and pale..and hairy..okay..you get the idea . I'm unable to do really any exercise and my whole life that was how I lost weight..I've never actually dieted. Is it possible to lose a little weight with diet alone? I've been looking at several of the national chains just to get an idea of their programs. I'm leaning toward nutrisystem b/c it's based on the glycemic index and you get all the food delivered. If any of you have any experience good or bad I'd appriciate your input..you can e-mail me if you don't want to mention a specific company..I hope it's okay that I named some in this post...feel free to edit me Nina if this isn't allowed .

I attended Auburn University in Alabama...Football is HUGE down here in the south..it's not just a "game" it's a way of life..literally. We are the Auburn Tigers...BUT our mantra is WAR EAGLE. So, we have a tiger as a mascot..who's name is Aubie..and we have an eagle that flys at our games named..Tiger..anyone confused yet? I moved to Auburn from Dallas, TX and it took me awhile to figure it all out..there are several stories on how War Eagle came about..I'll tell you my favorite. The legend goes..many years ago a soldier was fighting in a battle when he found a wounded eagle. The soldier nurses the eagle back to health and returns home..to Alabama with the magestic bird...The soldier..being a true southerner brings the eagle with him to watch his beloved Auburn Tigers play their arch rivals the Georgia Bulldogs...(or something like that)..during the game the Tigers were struggling and loosing their spirit..suddenly without warning the eagle takes flight..it soars around the field circling the players..the crowd is inspired and begins chanting WAR EAGLE...the Tigers then pull themselves up out of the trenches and win the game. Since that day our "battle cry" has been War Eagle. Till this day our games are opened with Tiger taking flight and circling the field before landing on the 50 yd. line...it's really an amazing feeling being surrounded by thousands of people crying WAR EAGLE as she flys around the stadium. So that's why I chose it as my user name..it reminds me to have heart, stay strong, and always keep up the fight. War eagle fly down the field..ever to conquer..never to yeild..war eagle fearless and true..fight on you orange and blue!!!! Wow..now I'm really ready for football season to start Thanks for the topic Pers!!!

Hey Briarrose..how long have you been having these problems? It could be related to GERD..I would recommend speaking to your doc. about getting a Modified Barium Swallow Study done if this is an issue you've had for awhile..or if it continues and gets worse. I say this only b/c coughing CAN be a sign of aspiration..especially if it occurs during or after a swallow. A MBS can show you exactly what's going on while you eat/drink and reveal if the coughing is related to your swallowing or if it's being triggered by something else. It's a non-invasive test that doesn't take long to complete..I hope this helps somewhat! keep us posted

Just wanted to add my congratulations! You should be very proud of this accomplishment. I loved reading about your wonderful day..it reminded me of my "college days". It's nice to be reminded that there are still fun times to be had..even after POTS. I think it's soooo cool that you spoke with the Prince..I just read an article about him in People...guess I'm being cheesy..but WOW..what a story you have to tell for the rest of your life! Congrats again P..hope you continue to do well! Thanks for sharing your special day with us!

Well..I'm trying to file for disability..they've ordered me a Psych. evaluation due to several references in my file to "anxiety". It took 15 mths. for me to be properly dx. with POTS and several docs. mentioned anxiety when I first became ill..so I guess I have to go to prove that I don't have an anxiety issue? I was upset at first..but I guess it's something that needs to be done..I'm just nervous because I have no idea of what to expect with this evaluation. I'm worried I'll be having a "bad day" and this doc. won't know the difference b/w ANS problems and psych. issues. If anyone has any experience with this and doesn't mind sharing please let me know what I'm walking into..I mean will I be looking at ink blots..filling out questioneers..or just talking? It's kind of ironic b/c I've been thinking of going to a psychologist to address having a "chronic illness"..the doc. I was contemplating going to happens to be the one doing this evaluation. Thanks in advance for any help you guys can give!!

I like to crochet or cross stitch. I know you said you don't do needlepoint..but these really aren't hard to learn..if someone can show you. I'm in bed alllll the time..and I've found when I'm at my worse I can still crochet...I've made scarves for everyone I know!!

Way to go Jessica!!! Congrats on your new little one!!

Okay..I'm reallllly late on this one..just wanted to say "ditto" to everything already said. I had my 2yr. anniversery on May 7..a day I'll never forget..but hey..we're still here right?! Alright Em..sing with me girl..."I'm a survivor..I'm not gonna' give up..I'm not gonna' stop ahhh...I'm gonna'..(I don't know the rest of the words..thank you Destiny's Child! Love you honey..keep your chin up!

Hi Blackwolf..sorry I didn't respond earlier..but I just wanted to chime in here..I am/was a Speech Pathologist and the majority of my case load was dx and tx dysphagia (swallowing problems). You may want to ask your doc. to order a Modified Barium Swallow Study (if they haven't already). It's a non-invasive test done with video flouroscopy. A Speech Path. usually administers the test with the radiologist. You'd be given different consistancies of liquids/solids laced with barium..it show everything that's going on from your mouth to the head of your esophagus..it usually takes less that 10 minutes. If the test indicates an esophageal issue..ie. strictures, ruflux..then you may be referred to a GI doc. to do a Barium Swallow Study..this one you drink some barium and they watch it go all the way down..it takes a bit longer but shows more with the esophagus..again it's non-invasive. It gets confusing to some docs. because the names of the tests are very simular..but they really look at different things. Anyway..I hope this helps ! Feel free to contact me if you have any questions..it's been so long since I've been able to work it'd be nice to "talk shop" again!

Let's see...I was born in Louisiana...grew up in Dallas, TX...then transfered to Auburn Univeristy..and now live on the beautiful gulf coast of Alabama!!

Hey guys..thanks for the info.!! I wanted some ideas on what to ask the OBGYN about before making an apt. I don't look forward to explaining POTS..maybe I'll call ahead and have the doc. check out our website before I go My POTS doc. suggested no period for about 3 months..then have one..ect. (like with seasonel). I'm a little nervous to change my pill..I've been on the orthocept for 10 years..it was my miracle drug when I was a teenager..had HORRIBLE periods..then after the pill I was fine. When I first got sick..one of the docs. I saw took me off the pill..this was before I was properly dx...I had periods every other week for 6 mths. then at Mayo they put me back on them. I've been wondering if I need a lower level of hormones..it's so confusing..are they doing studies relating hormones to POTS? We need to get some women docs. interested in ANS dysfunction!! Thanks all..I love being able to talk to ya'll!! Emily..you crack me up girlie..it's good to see you prowling around the board more lately!

Hi all...I know this has been discussed breifly before..sorry for bringing it up again..but I couldn't find anything when searching. My doc. is recommending that I stop my periods..hormones have been a major issue for me since becoming sick..I'm lucky if I have 1 week out of the month where I feel semi-human. I tried to use my regular b/c pills (orthocept) to stop my periods..but after a month I started having more night sweats and nausea. My doc. wants me to see an OBGYN to recommend the appropriate methods of halting menstration. I was wondering if any of you had done this...and if you have..what did you use and did it help with your symptoms. I believe the goal is to stop the hormone fluctuations...and hope that this will give my more "okay" days so that I can start reconditioning. For the past 2 years I've spent all my time falling into the POTShole and slowly clawing my way to the top..just to drop down again. I just haven't had any consistant "good" days and I think it has alot to do with my hormones...I don't know if the pots got it going or if the hormones are triggering the pots..what came first the chicken or the egg? I'd appriciate any input! Hope you all are doing well!

Thanks sooo much for posting about this..I've been meaning to ask about it for awhile..but I've been feeling really lousey and haven't been on the board much. I did have a question though...is it okay to use the ab. compression when you're in bed most of the day? I'd really like to be able to sit up more..but I always feel so off balance and fatigued it's hard even to sit up. I usually get up for several minutes at a time during the day..doing laundry..going to the kitchen..ect. but for the most part I'm propped up in bed..I even eat in bed with a tray. I've been so frusterated...I'd like to try this..but didn't know if it only helped those who were already strong enough to be up and around. Let me know your experience...I actually ordered a couple of the ab. comp. yesterday and look forward to trying them. Thanks for any input!!

Welcome back Nina My, my..you are MIGHTY!! I hope everything continues to improve for you! It's so good to see you posting again..I'm in awe of your strength and determination..I don't think I could have gotten through college with POTS...and here you are working too!