Lemons2lemonade

It really is. I want a line but am worried about building up a tolerance/dependence to it. Plus if I'm having a really bad day and need to go in, it gives the Dr.s something to do besides shrug their shoulders

Has anyone with a line noticed tapering of improvement after using it for awhile? Also, I have a question, why does saline help so much more than oral fluids? I.e. why are we holding onto saline better than oral fluids?

Jangle, I'm sorry you're not feeling well. If you live alone can someone come stay with you for the night? If you feel like you need to go then you probably should listen to how you feel. I hope you are feeling better soon.

I was a nursing student, exposed to cadavers and also a cna for a year

This is the kind of process that we all have gone through, and im sure many with any chronic illness have as well. Ultimately you are not meeting the diagnostic criteria. I had symptoms of pots for almost four years before I became orthostatic and was able to be diagnosed. I probably had orthostatic vitals taken once a year for those years and never tested positive. Something to.consider is talking to your doctor and seeing if you can stop the med. to check for orthostasis. However, intervention for any disease is not usually done until it becomes remarkably symptomatic or disabling. Unfortunately, I am not aware of any tests that can be provided by a normal provider other than the ttt. The other concern I have are the qualifications of this specialist. I do not feel that anyone in my area is qualified for managing this--including the university of Washington's highly acclaimed medical program. Another thing to note is that during a ttt they give you medication that can aggrevate orthostasis. One thing you should consider though is that stress can do some bizarre things. In no way am I saying that something may not be wrong. Either way, stress aggrevates many illnesses. Before I was diagnosed I went through the process of chemically treating "anxiety" when that didn't work it also made my case stronger. No matter what happens though, I wish you luck and hope that you can get to the bottom of this.

Lilly, no. Have you talked to your doc about this? Are they bruises?

It happens to me from time to time. It was slower with midodrine and beta blockers. I hope you start feeling better soon,and that is really awesome about being able to run that far!

Katy, I love the soup too! My favorite is chicken with stars

Haha yes it is jangle.

I have noticed some association with this. But i think it is the pots making the weight and not the weight making the pots. Within the month before my first "attack" i gained 15 lbs. Don't know if it was water weight or what.

You know, after reading this is was thinking about it. And methylphenidate (rittalin sp?) is supposed to help with pots. Something to note is that i was diagnosed as having ADD as a child--really it was more that i just didn't care what my teachers were talking about and i wasn't being cognitively stimulated enough. I was on rittalin for two years ages 9-11 and it made me sedated and lazy. I spent a weekend with my grandmother and didn't bring the medication with me. No one thought it would be that big of a deal. It was. I was a 11 year old basket case. I was crying, angry and just plain freaking out behaviorally. My parents had to come pick me up. That was the end of the rittalin for me. I tried taking it again since this pots onset and it didn't seem to help. But am thinking about giving it a try again.

I bought a pulse oximeter online for around $25. For the most part, it.is quite accurate and it tells you your oxygen concentration. One other thing to consider is that worrying about your pulse all the time is going to put stress on you, possibly leading to more symptoms. I only use my pulse ox, when I get scared to convince me that everything is going to be ok. I used to use it all the time and it became kind of an obsession. But I noticed that once I broke away from it i wasn't constantly thinking about pots.

http://www.amazon.com/Finger-Pulse-Oximeter-MD300C13N-Pouche/dp/B004BJT9OE/ref=sr_1_4?ie=UTF8&qid=1327174164&sr=8-4

He could be having concentration problems because of the pots...

Jangle, I read that too but have never actually heard of.it.

Cf- were you symptom free after being diagnosed?

Firewatcher, THAT is interesting. Same with my family my dad's sister and her daughter. Did your aunt have it, or was she just a carrier?

Haha you're right Jan, its kind of an oxymoron Thank you for sharing the story of your friend- was beginning to wonder if they even existed. Does she.still take medication? Also, anyone else know of a "survivor"

Katy, how much salt were you taking with the florinef?

I mean no medication, back to normal activity, working, no relapses?

i know what you mean, when i had pneumonia my oxygen was in the 80's. Still wondering though if there is some tie in here. You know how you get palpy and feel "excited" when taking it, reminds me of pots

I was talking to someone who sounded like they had been using it too. I also have used albuterol. It is causes vasodilation and uses epeinephrine/norepinephrine balance to achieve this

i used to get them about once a month, sometimes more often...

wondering again.

who all has taken albuterol, qvar, or had pneumonia in the past?

Definitely on the vasovagal. I had a class where there was a huge white board behind the teacher and for some reason that bugged me--was fine in the other classes. Another thing that sets it off is prolonged eye contact. Weird huh? I think of it like this: There is a threshold of stress that the body can take before it faints. We might not realize it, but these places or events that are setting us off are normally "stressful" and being dealt with hormonally in our bodies Its only when we already have an accumulation of these hormones to manage blood pressure, and add that little extra for the stress of the situation, that we reach the threshold of what i call a "pots attack" or dramatic exacerbation of symptoms. I drew you a picture but i don't know how to upload it in this message, so i uploaded it to my very "in progress" blog.

http://mysterypiper.blogspot.com/

During a pots attack my bp gets up to 130/100 pretty consistently, but it has been higher before, the highest it has been is 157/107 but that was after taking too much salt on fludrocortisone. I usually run 109/75 ish. You can look through your medical records and see what is used to run before you got sick--120/80 isn't normal for everyone.