dizzygirl

Hi Vanessa!! Welcome!! I dont think I've seen you pop up before.. so Hi!! Sorry that you are having a rough time.. I hope that your surgery goes allright.. and that you get much needed relief.. Hugs to you!

Oh wow... lauren... pls. have a safe and "Uneventful" flight to Hawaii.. load up on the salt and water and gatorade.. Take things slow.. request a wheelchiar or something getting off the plane... do you anti-nausea pills and stuff?? hugs to you take care dizz

Oh stacey... your post made me feel teary eyed.. I am soory that you have lived for so long w/ pots.. and sorry for what you are going through and have got through... I wish that there were a way that I could wave my magic wand (SP? LOL) and make everybody here feel better.. so that we could all live our lives the way that we dreamed that we would before we got sick.... DO something for yourself that you enjoy.. something comforting.. watch a fav. movie.. talk to a freind.. shop online!!... I know that I get discouraged that I cant really get out of the house to shop like I used too.. so I shop online... buy books and DVD's mostly.... I hope that all goes well witht he new dr.. for you.. pls. hang in there.. and remeber we all are here for you and we UNDERSTAND!! and love ya!! dizzygirl

Hiya! Sorry about your shine pain.. I know that has to hurt... Well what I was thinking was.. you mentioned that light pressure helps some times with the pain..Have you tried wearing compression hose? Us potsy people can have blood pooling in the legs.. where the blood and fluids that drop to the feet.. gravity doesnt work well so to speak to push it back up to the upper half of your body.. Now somebody please correct me if I explain this wrong... the way that it was explained to me was you can think of your veins and such in your legs as a pipes or whatever.. and they dont constrict or dialate properly pushing the blood up through the body.. casuing blood pooling... and compression hose can help you w/ blood pooling.. b/c of the tightness they caus your blood to push up to the other half of your body.. doing all sorts of things that a regular body is suppose to do automatically.... I know that I experience ALOT of leg pain...some of it explained... and as you mentioned I too have my doc baffled.. as for the cause of my legs pain and sweling...my x-rays of the knees and ankles of course looked normal... It was mentioned to me from Dr> Grubbs office that the pain in my legs might be POT pain.. which makes sense.. considering the pooling I have in my legs and and feet... They gave me cymbalta to try to help combat legs pain and a boat load of other symptoms.. and cymbalta is actuall the first POTSY medication that I have been on that helps some.. It does help.. with the legs some too.. she told me that people who have diabetes (like myself) can suffer from diabetic neuropathy and that cymbalta has helped with that pain... sorry babbled a bit... But yes.. as I read your post I thought of compression hose for you.. if your dont allready use them.. and when it hurts to walk.. please sometimes it is better not to try.. and just keep your legs elavated.. and apply the pressure...I take ultram for my leg pain... if my pain isnt severe then it helps...and if my pain is severe enough I take heavier pain meds here at home or have to head to the ER for some IV meds... I hope that you get some relief!!

WOW!! very cool!! thanks guys for all that you do..

hi kristen... good question.... I sometimes wonder had I not worked 70-80 hours aweek.. and had not been going to college full time..( i was working all them hours to pay for college!!).. and had not just totally shot down my system..if I would be feeling differently today... then I think well.. I have had some degree of pots since well forever... and I just think that that is the way that I was born.. with a wacky ANS system.... I think that when you are dealing w/ pots and stuff that the weirdest things can casue a crash or flare.. and that though we can try to manage our pots the best that we can.. and do all that we know how to do to treat it and manage it.. considering that not a whole lot is know about dysautonomia... we need to try and live our lives as much as we can... but also be aware of our limitation.. which I know can be hard and is at times areal learning experience... and we can be feeling good one minute.. and think Oh i'll be allright to do this.. and find that maybe an hour later.. Hmm... try not to be hard on yourself.. trust your intuition so to speak.. if your gut is saying HEY!! but your head is saying "GO AHEAD!" listen to your gut... its usually right.. but yes i have felt the way you have and are feeling... hang in there!

Hi.. I have taken medrol pack many many times.. to help with my breathing problems.. it does help with the breathing for a little while... I'm sorry though.. I cant recall the side effects from the med... just that it did help my breathing for a short while...I hope that it helps you!!!

Hi radha... I take ultram.. and it realy depends on my level of pain.. if my pain is moderate to mild... Ultram works pretty good.. and usually kicks in within the hour of taking it for me.. but if my pain is severe.. and unbearable.. I typically need to go to the ER or to the Doc to get some IV pain meds.. sometimes it takes more then one dose of IV meds to work.. push the pain meds and Iv fluids. and I start to feel relief.. Personally speaking.. I have to be careful w/ narcotic pains meds.. as I am allergic to alot of them... an ER doc told me once after he treated me for a bad migraine..that inorder to combat pain.. and get it under control.. that you need to take the pain med consistantly......I'm thinking as a preventative mesure... however.. i'm not sure how good it would be too take a narcotic drug like daily..b/c of addiction or side effects... or if it stops working b/c you get used to the doseage.. to where its not as effective.. You can speak with your doc about pain management.. and see if he/she can hook you up w/ PT ..aquatic thereapy..message.. moist heat.. or ice packs.. Uh.. and meds.. I hope that you get some relief soon

Ola folks... maybe I should explain alittle about why I got the diagnosis of fibro... I have had many x-rays done on my knees feet and lower back as well as upper cervical.. and MRI's.. X-rays in lower back show that I have muscle spasms in the lower part of my back.. (have not had MRI yet of lumbar..) and MRI shows herniated disk at the c5-c6 level.. along with a rotated spine just below the herniation.. along with scoliosis of the spine... and along with those finding comes some nasty damage to the soft tissue and such in my upper back.. and right shoulder.. there is often a great deal of pain.. asociated w/ this.. and of course the associated pain in the arms ribs and hands and what not...I also have gigantic knots all through out my collar bones-shoulders. shoulder blades, ribs and along the sides of my spine.. and up and under the back of my head..(the base of my skull.. where the head meets the neck)...since the age of 12 I have had pain issues and a mysterious problem with swelling in the right side of my body.. in the joints mostly.. knee-elbow.. neck swells badly.. My" pressure points" are all very painful most of the time.. nobody can really get close to trying ti rub the knotts out..b/c it hurts to the point of making me cry.. Anyways over the years my pain has gotten much worse.. and more frequent and much more increased in severity.. and intensity... I do have alot of the symptoms of fibro.. though some over laps with POTS...chronic fatigue..(am never rested even after a full nights sleep.. and often will have to take naps to get through the day..) never feel refreshed.. I have the migraines..IBS..I often feel feverish.. and have all over body aches.. that are unrelated to the flu or cold.. or another illness.. my skin will hurt to touch it.. when the pain is real bad... (my hair and nails.skin will hurt too..) So in a nutshell.. I think that its a combo of pots pain and fibro pain..w/ the distinct possibility of another unknown "MYSTERIOUS" somehting going on.. that has not been figured out yet.. I really need to have an MRI done from my head to my booty..I think that that would answer alot of unanswered questions...and also have a specialist who will look at the MRI scan and see what the average person does not pick up on...as these "INVISISBLE" illnesses are a pain to get proper treatment and DX for.. I'm sure that I'm forgetting alot.. that I could through in the mix.. but I'l stop rambling for now.. I just wanted to explain myself alittle better..

Morgan...WOW! fibro for 30 yrs huh? that bites big time! Hmmmm.. why doesnt it surprise me that docs dont take fibro seriously either!!! Jimminy-Crickets!! what is wrong with people! (dco people) I have found that they only thing that really gives me some relief is Toradol.. by IV.. along with some other pain relief goodies.... that and about 20 hours of sleep a day.. geez.. latley I canbarley hold my eyeballs open!! so freggin' tired!! ok rant over....

thanks guys!! I was just reading a thing from the mayo clinic on fibromyalgia.. some of it sounds just like me... and while reading it said that I believe one of the causes of fibro is ANS dysfunction.. so maybe it isnt so far fetched... It just kinda bugs me that there are so many things that go wrong w/ ANS stuff.. fibro.. you name it! WOW!

Hey all... sorry i have been away this week!! This has been the week from h***!! My pain is just like unreal this week.. and potsy flares are just as bad!!!!! Any it resulted in mutliple dr. trips this week and lots of pain meds... My doc thinks that I have fibromyalgia...as she cant figure out the casue for my legs pain.. and all the other pain that I get... I have my doubts though.. I think that I have fibro... but I dont think that it is the casue of my leg pain.. I am not having muscualr pain in my legs... the only way that I know to describe it.. as I have said befoere.. my bones just feel like they are going to break in a million little pieces at any momnet.. there are just so many factors going on.... Though on the other hand.. fibro does explain SOME of my pain.. in regard to the all over aches and such.. and the pain from head to toe.. hm I dont know.. I have a feeling that the DX was given b/c the doc does not know where else to turn or look.. I'm not dr. bashing...as she has been great at looking into things.. But I cant help but think and feel that we are mising something important.. in regards to my over health.. aside from all the issues.. like before i got dx w/ pots and "they" kept telling me that it was all in my head.. when in reality... my ANS system is all wacky!.. I knew then and I know now.. I know that if anybody understands what I am saying or trying to say that is.. it will be you guys.. Ihave been on anti-inflammatory after anti-inflammatory.. since I was about 12 yrs old.. and they dont really offer relief... wouldnt at least one of them dont something if it was all fibro realted?? ((((sigh))))) thanks for listening to me ramble on and on guys!

Ernie-you are too funny.. well baby boy.. I am housebound for the most part now days...(I hope that when my wheelchair comes in that that will change!! ) On these few rare clear moments I like.. no LOVE to read.. I sew make quilts.. crochet.. and embroider.. I like to cook.. but have a hard time doing that most times either b/c of the whole standing thing.. or the heat in the kitchen is too much for me to handle.. (there is a saying here in the USA.. that my great-aunt used to say... "if you cant "stand" the heat in the kitchen then get out.." funny how literally I take that now.. HAHAHAHA I too when i was able to work.. worked 70-80 a week.. and wnet to college full time.. that was in 2001-2002

Hiya.. yeha i will agree with others on symptoms seems to get worse w/ other illnesses and such.. last weekend i landed in the ER.. and my resting HR was 132-140.. and had lovely spikes going to approx.160 ish...YUCKY!!!!! have you tried a nasal spray?? I know I am ausing that Afrin nasal spray.. and it helps some.. this may sound weird.. but you can also try making acup of warm tea (decaff of course..) an kinda inhale the steam..it can also help with that nasal congestion..and menthol cough drops also help open you up.. and Eucoliptis )SP???)oil.. put a small pot of water on the stove top and and heat it.. and drop some of the oil in the pot. and that helps too.. I realize that these arent like the usual way to treat a sinus infection.. but when you lives inside of a potsy body and cant take decongestants.. and you are sensitive to so many meds that you lost count.. you learn new ways to "feel better" and defeat the congested monster that has invaded your head!!.. I hope that you feel better soon! dizz

Hi Terri!! welcome!!! glad that you found us!! you will find great support here..

WOW! persephone what freakin' moron!! peopel can be so insenstitve and well mean! I hope that you are able to ge the help that you need to switcher -roo.. to acloser dorm..

Go Nina Go Nina Go GO Go NINA!! WOW that is very cool!! I couldnt imagine doing that even on a good day!! You are Mighy Mouse for a very good reason! Cool... good luck... HUGS!! LInda

Wahoo!! I'll bring the pretzels and multiple flavors of "gatorade!! dizz

HAHAHA! Like Kermit the frog!! geez that definition of dysautonomia bites.. today my counselor looked in her "Meck or "merck" book.. and pots isnt listed in there.. she looked al through it...though Shy-drager syndrome is in there..

YEAH TEAROSE!! So glad to hear that you are improving!! and gaining alife back.. that is awesome! Your story is encourgaing!! hugs to ya Linda

Joy rose.. aww.. your post moved me to tears..I am so happy that you have a man that is so "intuned" so to speak.. and I agree w/ alot of what you said...I just think that its wonderful that your hubby has stuck by you even during being sick.. no matter what... I'd like to hold onto that and think that maybe one day i will find Mr. right... and he will accept me as I am... not ry to change me to fit the perfect mold of His expectations... anyways.. your post was very good... hugs dizz

thanks guys I'm happy about this too... Um I dont know what an abdominal migraine is.. I have heard people on this board mention it... but dont know what it actually is!! SO I am hoping to get to the root of thing finally...maybe just maybe I might be on the road to "recovery".. after 23 yrs of living like this.. I should hope so!! I feel hopeful

hey all how are you all doing?? hope ok.. Well I went to see the new GI doc that my family doc set up last week.. and she is fantastic!! I was like oh wow! thank god!! And best of all she knew whats pots was.. as did alot of her staff!! I'm like OMG--you guys have been here this whole time.. and I never knew it.. she stated that I have multiple GI problems going on... she is starting off w/ lab and stuff.. the the first week in Decmeber I am going to have an Upper GI scope w/ possible stretching of the esophagus.. then 2 days later I will have the colonoscopy done at the surgery center... she said that she wants to start with these test.. and then after we get the results back.. depending what is found.. she wants to do an emptying scan/test to check mobility... and some kinda test to see if there is blood pooling in my stomach.. She does not think that all the GI things that are going on are POTS related.. that there is something other then that going on..I told her that I have had these problems since I was very very young.. I can remeber being about 7 yrs old.. and I was with my mom at the laundry mat.. and I remeber that it was very warm.. and my stomach started to hurt so badly...my mom made me lay down on this bench...I remebr being so cold..and nauseous... and rocking back and forth while laying on this wooden bench.. and I just cried b/c my tummy hurt so bad... Ok rambling over.. But just wanted to share that I am very happy to have found a good GI doc.. finally after all these years!!!

Ling Hi... I am sorrry that you are having such a hard time and that you arent feeling well.. I unfortunately dont have any words of advice.. as I have never been pregnant.. but I just wanted you to know that I hope things settle down for you and that you can enjoy your pregnancy..and feel well... god bless you and your baby on the way!! dizzygirl

WOW!! Melissa.. you certainly have alot on your plate.. I am glad that you are able to get into the clinic tomorow.. that is fantastic!! good lcuk with all that! about mestinon.. I had a great deal of problems on the XR timespan Mestinon.. I was taking 180mg one in the morning and one in the evening... and OH my... things were not good!! I am now down to 120mg 3x's a day.. is till have some trouble on that dose.. so it needs to be tinkered with again.. I hope that you ears feel better.. I know last week I ended up sick.. ans spent the day in ER saturday.. comes to find out that both my ears are very infected.. and I have s sinus infection as well as acute brinchitus.. they gave me antibiotics.. ears drops.. whcih are working better then the antiobiotic) and an inhaler to keep the airwaysopen.. plus vicodin for the chest pain.. of all things.. you can try stuffing cotton balls in your ears.. it will help when you are outside w/ the wind blowing and stuff... sounds weird I know.. just wanted to say that i hope that things improve for you and that you start to feel better and that things get worked out as far a school.. and that your mestinon gets aquard away too hang in there