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!

Nina, The pilates doesn't "feel" like exercise! You know how good it feels to stretch really big first thing in the morning? That's what the entire workout feels like! It just lenghtens and strengthens the muscles without the "strain" of a workout! It really soothes your body and helps release tension of a long day! You should watch a video of it and see what I mean. I bought Denise Austin's pilates/yoga for like $10 at Wal-mart. Even still I'm not as faithful as I wish I was with it! Laziness rears it's ugly head from time to time I'm excited though for the spring to finally be here this year! With the Octreotide treatment I'm on I will be able to actually walk or maybe even ride a bike (short distances of course) And enjoy the spring breeze! I haven't been able to do that for at least two years now! Sue, I hope you can cut yourself some slack for the weight gain your body is going through alot of changes and alot will happen before it "stabilizes" -flash back to when you were 13? hehehe couldn't resist sorry! Deanna

Great post Purplefocus!!! The weight gain *****! I spoke to a dietician at my last appt. and she put me on a 1400 calorie a day diet. I'm still in the "healthy"(yeah...there's that word again) weight range for my height according to her. But I'm also 20 pounds heavier than I was pre-pots. I finally found someone who would "listen" to me that if I have gained 20 then I could all too easily gain 20 more and I want to stop it before it gets out of control! I also can do pilates and it feels really good...it not only exercises your body without raising HR but relaxes your mind as well!! It's very soothing and refreshing! Sue... hang in there it HAS to get better sooner or later! Just do what you can and try to not focus because the more depressed you get the easier your body stores fat! Vicious circle!!!!!! Deanna

O.k I'm the odd ball...... I was a letter carrier for the USPS . I also have family members that I feel have it but haven't been diagnosed properly yet. I was CONSTANTLY exposed to all sorts of viruses. ( You'd be amazed at how people will answer the door and sneeze on you ) I dont beleive I'll ever know the positive reason how I contracted this! There does seem to be alot of nurses on this site but then again nursing is a big career field and also nurses seem to research these things quicker than the rest of us. They just know where to look and what to look for. ( more education and interest in how the body SHOULD function? maybe? ) Enough pretending to know what I'm talking about

POTS & NCS with yeah... you guessed it! ALLERGIES! I'm super- sensitive to all drugs and most perfumes ...can't use any soap except ivory or dove and cant get in the same room with a cat or even where it use to be! Migraines-which I believe are a symptom of POTS a "Mild mood disorder" which also I feel is as a result of POTS Probably more but brain fog presumes!

POTS is not terminal but like you that was a fear of mine ...I thought it would weaken my heart and cause cardiac problems later on but my doc says no and I have to believe him! It is however disabling and very disruptive in all senses of the word! As Sak stated the depression is very strong and "when" you experience it ( it seems to be inevitable) speak to your DR immediately! Beta blockers aren't necessarily dangerous but they dont always help everyone ...this is a trial and error illness what works for some makes others worse. Good Luck! And I hope you dont have POTS but if you think you do then find a Dr who knows about POTS and other dysautonomias. Have you had other illnesses ruled out yet? That needs done first our symptoms are similar to alot of other illnesses!

Bless you all I dont know where I'd be without you.......... Yeah I do, crying by myself so that my friends and family dont realize how hard this really is! It's nice to not have to "be brave" for you guys because you KNOW how I feel without me saying it. So THANKS THANKS THANKS! Here's hoping with our new season that we will all do better than we have been!!!

Hi Ladybug! I'm sorry you have to suffer with us and at such a young age too! I'm 30 and a single mom of two ( 11 & 4 yr old girls) I depend on friends and family WAY more than I'd like to but am actually not safe home alone with my little one when I'm sick! I COMPLETELY understand feeling like a burden but please be thankful for the fact that YOU feel like one and that your FAMILY doesn't see you that way!! It shows how much love you all have for each other and that is more important! We may never know why we have been chosen for this but it is for a reason and your family doesnt see it as a bad thing to have to help you they hurt because they cant help you but feeling guilty only can make your symptoms stronger and if you're not already on depression meds then you need to tell your Dr that you might need them. We ALL experience depression with this it IS a symptom and NOT something to be ashamed of! Feel free to e-mail me anytime you need to vent that's what I'm here for and it will get easier to handle when you have others who are going through the same thing to lean on! Hugs!! Deanna

Most definitely! POTS varies from day to day and even though it's rare we do have a good day sometimes. Just like a car problem it acts up until the mechanic is checking it and then it purrs like a kitten! Frustration should have a picture of a POTS patient pictured beside it in the dictionary!

welcome to the "Brain Fog" symptom! It's pretty common just stay calm and slow down your thinking. Make lists for even the simple things and that will help a little. When I get that the strongest I will pick up the phone , dial it and have no clue who I was calling until they pick up! Or be watching a really interesting show and a commercial comes on and I have to struggle to remember what I was watching. It feels odd and can be frustrating I try to laugh it off but it does get old quick! Do what you typically do to help lighten your symptoms because this is one and up salt and water it should help if it gets worse or your think it may be your meds call your Dr . I'm not an expert and we are all different but brain fog is a part of this fun rollercoaster we are on! Good Luck! Deanna

O.k here's my "uneducated guess "on the standing -sitting -thing It's not necessarily a particular position that's the problem it's more a lack of blood flow when we aren't moving. Standing gets faster results because the blood packs in our legs but sitting without moving also makes it hard for our body to force the blood back to our hearts. My Dr says that with POTS our perifial(sp?) nervous system doesn't work to fight gravity and force the blood back up to the rest of our body. movement helps to keep the circulation going. Of course as we are all aware once it gets to a certain point it's difficult to reversse! As far as church goes I'm not Catholic so I dont know how different it is but at my church I ask for prayer requests for my health and that lets everyone know why I cant stand for as long. I sometimes say I have a heart condition when I dont feel the need to go into detail. It is easier than trying to explain POTS or NCS ( I have both) I tell people that my heart and BP dont play nice with each other! When it's someone who is or will be part of life regularly I explain better so that they are prepared when something happens to me. It cuts down on the fear for us both!