k&ajsmom

Ive heard, though stil not good for u , that the classic flavors have the least additives in them. (yellow, I think is one) I do miss my gatorade since giving it up, its very conveinant.

I wondered about this too. I was just looking through my last labs and mine said this too...?? I have no clue what it means so I googled it ..lol bad idea as usual but generally I got the assumption it has something to do with having a uti?? Id ask the doctor to be certain. Im curious as well on this one ....any ideas guys???

Im so sorry and I completely understand this. I feel so guilty for leaving my kids hanging most days. I havent gotten out of bed other than to move to the couch in a while lately and certainly have been housebound since october. I said to my 13 yr old daughter this morning from bed of course, that when Im better they get to play hooky from school and we will go anywhere they want, and she said "well, thats cool mom but that probaly wont be this year" uhh, that broke my heart. and when they say things to eachother like " i miss the way mommy used to cook" it really makes u appreciate the things we have taken for granted previously, atleast for me it does. I hope this gives are children strength in their lives oneday and character to empathize with others if nothing else. This really is an emotional illness as well as physical. If we had two broken legs, well we know there is a light at the end of the tunnel. Pots is so elusive and just am hanging by a thread to the reassurance that sooo many of us get better. I hope u find some comfort in that too. I know I cryed my eyes out on a few occassions and I know Ive developed some pretty noticable depression from all this but I still tell myslef its temporary and it gives me just enough hope to not totally give up. Hang in there hun, I find a good day of grieving smetimes helps me pick myself up the next day. Take care-sarah

Thx Bren, IM glad IM not alone on this, in a way. Things are like a roller coaster around here. I geuss in way I need to understand they are kinda greiving this illness too. As much as I hate it, I know they miss the old me...lord knows I miss the old me. I have had a really rough go lately and had a little meltdown at like 6 am yesterday, where all I could do is cry and tell my fiance ,I dont wanna do this anymore and I miss my family, I feel like Im in a box just watching all them live without me and I so desperatly miss "life". ALl I can do is hope it sunk in to him how hard this is for me. I think he knows but forgets sometimes. He really does so much for us but I think he is dissappointed with this life that Pots has given all of us. Not to say he doesn't just have selfish unrational moments like I described above but hey, I geuss Id be a little crazy if he got sick and I felt like I was losing him to any reason, including illness. Its hard when family isn't supportive in the ways u need them for sure. My mother still thinks I just need exercise even though she is cognitively fully aware what pots is and my concerns with my heart. ugh I just want my life back and family for that matter. I feel so disconnected from them through this because I can not feel much other than sadness, illness and exhaustion. This is such an emotional illness at times because of the ellusiveness of the causes and cures. <sigh> anyways thx for the encouragement Bren, take care

meh....not a big fan lol

these are some cute responses. I always say "or maybe its Maybeline" hahaha I stopped wearing makeup a while back and people finally believe Im sick...sad lol

Agree with Chaos, I believe an endocrinologist does this kind of testing. Also agree a food diary is wise, u may not be getting as many essential foods as u think, either way its good to show a doctor what you've been eating if you decide to go.

Bananas avatar made me giggle too Naomi...lol No real changes Ruby,never thought Id see the day I put on spanx and just hang out around the house lol =( Heartrate really high today so far but I have been bedridden a bit more lately so Im hoping deconditioning is the cause for no improvement. Gonna try to get on my feet for atleast awhile today. Take care guys =)

I dont have any answers here for u, however I imagine for a healthy individual dealing with the changes in your body and chemical flucuations they would be tired and then sprinkle a little POTS on top...ugh. I am so very sorry for your loss and I hope u can find the time to rest and take some physical and emotional time to just recharge. Thinking of u and hope u feel better soon...take care {{{hugs}}}-sarah

hey seattle, Ive had bad luck with gluten free bread, its all been like chewing cardboard. Gf rice pasta is pretty good, and doesnt seem to settle as heavy as wheat. Tastes pretty good as far as a replacement goes.

Thx for the discussion and explanations...i geuss if dysfunction is ruled out and heart structure is sound therectically we are "trying" to adapt to this state are bodies are in....no wonder we struggle so....its still concerning, i cant seem to trust my body ( especially my heart.) would think if we can send a man to the moon someone could figure this out and fix it!!!! Angelaintexas, since u are a paramedic, how is someone treated who has traumic hypovulemic shock? (Obviously stopping the cause, ie stopping blood loss etc but after? If u know ? =)) Thx and tc

ugh, so sorry some of u got sick. Its so hard to tell whats "new" and whats the normal everyday sick feeling sometimes. But I def feel awful for sure. Bren, I was just wondering if I could have a sensitivity to wheat and not gluten. Ill experiment with that later down the road I geuss, when I can tell whats causing what. I think barley is one for me too. Sadly I ate Lindt chocalates a week ago and got very sick and barleys in the ingredients...=*( Im also wondering about corn too. I ate some tortilla chips, plain gf, and got sick today from them. But one thing at a time, Im running out of food I can eat =((

Googled pelvic congestion syndrome and it all sounds very familiar, I did however go to the gyn when all this started and only had a small cyst and undetermined endo which they said wasnt bad enough to cause the issues I was having. However we all know that can mean nothing coming from just one uninformed doctor. I experimented with a little compression on the tummy today via spanx...never thought Id wear them again after the wedding I bought them for lol but they seem to help with the dizzys however they have also seemed to narrow my pulse pressure a bit more than usual. Pre spanx bp was 88/64 right after I put them on it was 90/60 (yay) then after about an hour my pulse started feeling weak (as it does lately quite often) and bp was 88/74...not sure if this means anything, too soon I geuss. I def. think after hearing from you guys this is something I am dealing with and would explain some of what I am feeling, however what has caused it to go crazy so quickly? ugh I want off this ride =( Thx guys for the feedback, I truly appreciate it -sarah

Hi megs, I dont have the high bps but alot of us on here do. Search hyper-pots, may help find some old posts on high bp and hr....tc and OOHRAH!! =) -sarah

hmmm..after researching this a little with you, I am a bit perplexed myself, I hope someone can explain this to us both because the simialrities are eery...=( I have the high diastolic an dlow systolic sometimes and I know this is happening because my pulse will seem weak. It happens everyday off and on....HELP...lol <nervous laughter> for instance today my bp originally was 90/60 ...then after feeling my pulse weaken I checked it again and it was 84/70...i dont get the high bps but def the low pp is consistant for me.....very concerning with the ventricular dysfunctions involved

I can relate to the layering. Although heat is rough for me, i am always cold...right now i have two sweatshirts and long sleeve t on, sweatpants , socks, boots and two blankets on. My house is 74 degrees so this is a bit much i think but im stil cold. Lol if i had a firepace i would never leave its side lol

Well this is interesting. I wonder if salt (by way of adrenaline) could be contributing to pvc and adrenaline "surges" i get after eating and why salt seems to help some and not others. I wonder though why a bag of saline doesnt seem to effect me the same as table salt and doesnt seem to add to my pvc and addrenaline. This is def. Worth some investigation....thx for the post =)

Just thinking about u and praying u found hope through ur appointment today..tc-sarah

Just thinking about u and praying u found hope through ur appointment today..tc-sarah

Since many of my symptoms correlate around my chest and stomach I started to wonder if I may be having abdominal pooling. I wore my compression hose one day and they helped only slightly and then the next day the seemed to make me worse. I do not have signs of pooling in my legs that are significant. I dont swell, and the only time they get reddish/purplish is with showering or hot summertime walks outside so I tend to think my legs are fine. However when I stand I feel like my chest is being drained and it just wants to cave in. I have immediate tachy and feels like suction from my head down through my chest. I always feel the need to lean over and sometimes this helps almost immediate realieving this sensation of suction. I know it sounds wierd, I just dont know how else to describe it. So , if the blood is not going to my legs, could what I am feeling be blood going to my abdominal area? Can u have abdominal pooling without leg pooling? anyone understand why??? If this is happening shouldnt I feel more bloated or something then? I have no physical signs, swelling or color change to my abdomin. I do get bloated after I eat though. And if this is happenning could this be the cause of my constant stomach issues?? Im not sure how all this works, and trying to decide if an abdoiminal binder would be wise. I have constant stomach pain so I dont wanna use one if this doesnt make since? (that and I dont wanna waste any money ) I also have just went gf to try to see if this would help. Thanks for any advice-sarah

So Ive been on a yucky downward spiral that I keep trying to pin on whatevers happening currently, my cycle, diet, meds, the weather etc... and I decided to rule out gluten after hearing how so many have had an improvemnet in symptoms with gi dysfunction. I gave it up 4 days ago now, after getting very sick from what I assumed was dinner the night before. Since then however I am having some strange symptoms pop up that I havent dealt with in a while. My asthma is acting up, but very deep in my lungs instead of near my throat where it usually gets me. Im also Having chest pressure and pins and needley type pain in my chest that is unchanging. SOmetimes I can press on the spot and it will ease for a minute but the pressure is still there. Im not haivng any improvements with slowing down my gi freq. yet, which I didnt expect ,but Its actually getting a little worse?? And my nausea is coming back and interchanging with a gnawing starving crampy pain. Im wondering if gluten withdrawel is real? or if if this is just coincedental? How did u guys initially feel giving up gluten? I did this once before and had no symptom improvement but I also didnt have any worsening either. and I only stopped cause I was admitted in the hospital and they refused to go along with my diet. I also noticed when I stayed there they gave me the colonoscopy diet....magnesium and miralax and after it seemed to clear my tummy drama up for about 3 days, which was amazing but it came back as I started eating again. Can cleansing like that help with an allergy to gluten? Thx so much just trying to stick with this but feeling discouraged...again lol story of my life....<sigh>

Hey ALtruism, Im with ya on being upright for only a few minutes lately =P ugh anyways the ans is relieved of some of the stressors of gravity when supine but that doesn't mean its "fixed" I get these feelings laying down even worse than standing. Of course when Im standing Im a bit all consumed with chest pressure and cardiac symptoms and the all-luming "am I gonna stay upright or pass out" feelings so maybe Im just not aware of it as much. My doctor, though he lost on hwta to do with me, says the ans is "freaking out" ur gonna feel it no matter what ur doing until it finds homeostasis (and he says it will, we just have to be patient<sigh>) Tc I also get this feeling intensified, like butterflies in my stomach trying to escape, right before I have to use the restroom....I know thats wierd but does anyone else feel it get worse then??

Definatly summer...I cant take heat at all. Feels like I cant breathe and my insides turn to glue...blah

Hi cammee, Yes, this is why they admitted me. My hr would jump to 140+-180 and bp would be normal around 90/60 then heart rate would become normalish and bp would plummet. SOmetimes they would happen at the same time but they did not seem to correlate to eachother specifically. Doctor said its just ans doing tricks?? glad its ammussing for him lol sorry u were in the hospital, I hope ur feeling better =( take care -sarah

There is def. a genetic pre-disposition to these sorts of conditions. My maternal grandmother had addisons, my grandmother had undiagnosised fainting spells with hypotension and my mom had mitral valve prolapse and if she were to be tested I have no doubt she'd qualify for Pots. I have autonaumic dysfunction since I was a toddler so there is def a possibility of passing it on. I am determined to figure mine out so I dont leave this confusing bag of tricks for my kids. My daughters been complaining of what I think is pvc's and my son has chest pains and "black vision" so eeek I hope the doctors can figure it out soon for them...sorry ur having concerns here. I hope he is just a dehydrated or somehting minor, and if not its a blessing u are on top of it now. Prayers and good thoughts ur way =) sarah