denabob

Yes I've done that too but not always in a car I've done it standing too. I use to dream about falling alot when I was younger and I've seen others on here talk about that so I wonder if it is that feeling during sleep that causes the dream? Something else to wonder about!?

HI everyone! Long time no post! Anyway.... when my cortisol was tested it was "mildly low" not enough to classify me with Addisons which is why I had it tested to begin with ( the two illnesses evidently carry some similar symptoms- imagine that something with similar symptoms ) but nothing was ever said about adjusting it or it being a link in this wierd chain of events! good luck with your research I hope it helps I share the opinion of the former post about doing anything to prevent my kids (or any one else for that matter)from suffering through this because I too see small indications in them ....I hope I'm just being "over sensitive"( no pun intended.. o.k maybe a little ) and looking for things that could be "normal" adjustments for their developement. Be Well! Deanna

So VERY sorry for your loss!!!! Welcome to our little group!

Just when you think you're doing better POTS rears it's ugly head! Refering to the cold.... my Dr says that something as simple as the sniffles can completely decondition our bodies because we dont have the resources to balance BP and HR and fight another sickness at the same time! I hope you feel better soon! These setbacks are hard because when they appear first thing in the morning it feels like we're back at the starting point all over again! At least we are strong people and we always seem to make it one way or another! I commend you for working at all. A couple of you have mentioned being jealous of co-workers for getting by effortlessly and I suppose I'm one of us who can get a little jealous of you for being able to work at all. But as they say "the grass is always greener on the other side of the fence" my ending to that saying is "until you have to mow it too!" Feel better, Deanna

Wouldn't happen to have a scanner would you? I was thinking you could scan it and we could print it off? Just a suggestion, I know alot of us will be curious to see what it says and I figure my Dr would be interested in it also.( He struggles to get even his Dr friends to take this seriously!) Thanks ,Deanna

I was approved for SSDI and never saw one of their doctors. Go figure!? I went through two denials and a hearing to get here. So hang in there! Deanna

O.k I'm going to guess that you may have gotten that backwards about the tachycardia causing the low bp it's usually the other way around. When you're blood volume isn't high enough or you have blood pooling ( that doesn't always cause swelling- I swell sometimes but not always)Your heart thinks it needs to work harder to compensate for the blood loss. Please dont take that as an offense I'm not trying to correct you that's just how it was explained to me.We are all different though so I can't say for sure which way it is for you. Dehydration is a common "side-effect" or symptom which ever you prefer to call it of POTS I consider it a trigger of other more disabling symptoms but I guess we dehydrate easier than most. High salt and water intake is VERY helpful! I'm not sure the cause of my intolerance but I do load with electrolytes(mainly sodium) but florinef made me worse and caused weight gain. Good Luck, Deanna

I did a little research on GABA on the net last night and from what I can find it is used for a variety of things. So far I've found it used for : anxiety,stress,epilepsy,lower back pain, tremors,hypertension,sleep interuptions,depression and growth hormone deficiency(storage of fat) I bought a bottle at GNC and thought I'd try it. I couldn't find any negative affects or drug interactions so I figure why not! I'm all for a natural substitute for something as addictive as lorazapam(sp?) Keep me posted on your experience with it! Deanna

Dawg Tired: And I thought I was the only one who rode around with my feet on the dash! I'm very lucky to have friends who completely understand as a matter of fact my best friend has been with me at the Dr for testing ( someone has to stay with me because I usually go for about 3 days and stay at a hotel -my mom and boyfriend have also went) it helps because they can see on the monitors that it is NOT in my head and she actually usually tells ME it's time to stop. She says my eyes get red and cloudy and I start to slow way down so before I can say anything she( they ) tell me it's time to sit! My oldest daughter has more of a time understanding. My illness limits what she can do and she struggles with that! She's 11 so she's in the world revolves around me phase. Sue: Is there any way your family could take turns going to the doctor with you so they can understand better?

Welcome ernestine! Thank you for making me your first reply! I can also tell that you guys are as stubborn as I am . We all ( Thank God) seem to be strong - willed individuals and we fight ourselves more often than not! I struggle to not see myself as disabled and try my hardest to fight the "poor me" feeling (though sometimes I lose that one) I refuse to live my life in a bubble so to say but I try to watch what I plan and the commitments I make! I'm so afraid of letting people down yet again! I guess this forum will serve as my anti-anxiety fix for now and my friends will keep me lined out as much as they can on my responses. Thanks! Deanna

I know the brain fog is a definite symptom of POTS but what I'm curious about is the emotional rollercoaster we all seem to ride. I realize depression is a symptom also but just like the "drug sensitivities" I seem to have "emotional sensitivities" I seem to be what my mother always called "mello-dramatic" I react to the smallest of things to an extreme! Now that I'm older and a mother myself I've learned to talk myself through most things and hide my feelings when they are unjustified! But they are still there!!! I get certain times when my emotions are all over the spectrum and I swing from one to another. Aggrevation, self-pitty , irritation , and even a sort of numbness. Is this related to our illness? My boyfriend (lovingly ) says that it just means I'm female. Cute huh? Is this something that Lorazapam or something similar could help? This week has been real strong with it and I try to keep to myself to keep from upsetting my friends and family over nothing! My friend Lisa (who has posted with me before) is a support when I'm this way because she helps balance me. I can call her and tell her my situation and mood and she tells me to snap out of it if I'm overreacting! I get tired of being so "aware" of my body and feelings all the time Ya Know? Oh how great it would be to function "normally" well that thought needs to stop! This is what I have and my life has altered due to it and I have to accept it. My point is... ( finally huh? ) The more posts I read the more I see myself in you guys and you seem to experience the same swings as I do. Please tell me I'm not crazy!! Am I just touchy or is this the dysautonomia too? It gets confusing trying to figure out what to blame on this illness and what is something unrelated! HELP me sort it out PLEASE! Thanks for listening if you made it through my rambling! Deanna

Bless your heart! I guess you need to tell your family that you can only go with them if they agree to bring you home at a designated time! You have a real illness and they need to respect that! I try to educate any one who I will be out with that when I have to go I HAVE to go! Good Luck in the future and Hope you feel better soon! Deanna

Paige: I read a really good book one time (if you enjoy reading I highly recommend it!) Joyce Myer is the author and thanks to brain fog I cant remember the specific title but it's something to the effect of "Controlling your emotions instead of your emotions controlling you" Feelings are temporary and they dont have a brain so you have to shake yourself and say ENOUGH! I'm worthy just sick and this too shall pass! Nina: You are a true God send! You're kind and helpful words have helped us all! Deb: How much Lorazapam do you take? I'd like to try it...my mom takes it for another reason. I took zoloft and it helped for a while but I wasn't happy with the side effects( which you really dont want to know about! ) Maybe it's a full moon or something I've been healthy( well not sick) but extremely moody! I have my poor boyfriend thinking I'm mad at him because I pouted about not getting to see him much lately ( due to work) I should be ashamed of myself he's so great that he just tries to pacify me. He knows why I get this way so he tries to not take it seriously when he knows he's not guilty ! Morgan617 : I'm sorry you have had to experience such a hard time with your animals! They can truely be as close as our children - they are part of the family! I hope your cat does well. I'm allergic to cats so I lean towards dogs but I understand the love of an animal! Deanna

You want to know how bad my brain fog was today?! I took a nice long soothing bath to rest and try to gather myself....I got out feeling much better and when I dried off I realized I had shaved ONE leg How pitiful is that? I didn't know whether to laugh or cry! I felt like such an idiot but it's just one of those things with me lately! I'm getting use to having to make lists for simple activities and going to unload the dryer only to find that I forgot yet one more time to actually start it! But shaving ONE leg is a all new low for me Of course my friends got a kick out of it and I guess it is a little amusing but when it tops off a bad brain fog day it's hard to find the humor Here's to thinking clearly again!! Deanna

Happy belated birthday Sue!!! I haven't been on in a while so I'm sorry I missed it but Congrats on a great dinner! Enjoy every minute you get healthy- or at the very least less sick - Deanna P.s And many more!!! Too bad I dont know how to add a music note! It's better than hearing me sing it though trust me!