Lemons2lemonade

hey jangle, is there a test for ace2?

I really think there needs to be more research and education in this area. To, me, it seems as though there are some serious classification issues with pots. There are people on here with pacemakers, ankylosing spondylitis, EDS, PAF, NCS, MVP, autonomic neuropathy, mast cell activation and immune issues including severe allergies, post pregnancy, teenagers, hyperpots, history of drug overdose, traumatic brain injury, etc. As far a patients, causes, and appropriate medication regimens, we are apples and oranges but we are all called one thing, pots. i blame this on the diagnostic criteria. A TTT only shows that your body behaves abnormally on standing and hardly reveals anything about cause or the appropriate medication for each patient. I feel that there needs to be more inclusive premises for a pots diagnosis that should look something like this:

EKG->Basic Metabolic Panel-> complete blood count-> cardiac enzymes-> caridac panel including troponin-> cortisol-> Testosterone-> Estradiol-> Thryroid tests(not just tsh)-> glucose tolerance test/fasting glucose-> Western Blot for lyme-> Eppstein Barr panel-> Vitamin D, Magnesium->echocardiogram->holter monitor-> event monitor-> ttt->brain mri-> EEG-> Plasma and Urine catecholamines-->urine metanephrine-> full allergy panel-> tyrptase levels-> mast cell tests-> Vasoactive Intestinal Peptide, angiotensin II levels--> QSART test--> Electromyography-->

Anyone know of other tests that should be on here?

Since you have had pots, have you noticed any changes in the bloating that occurs during menstruation? I noticed that when i was in my 20's, my bloating increased significantly. Then since i have had pots, the bloating has reduced. This is probably the best i have felt during this time, i have been active, not laid up etc, and i noticed that my bloating is remarkably higher. Like, last night, i was concerned about my kidneys because the bloating was so significant. I only urinated 3 times yesterday, despite drinking lots of water, as opposed to 10 times a day, with salt and fludrocortisone.

I hear a lot of people say that that they knew something was wrong long before they were ever diagnosed. I am wondering what everyone's signs were throughout the course of onset. Mine went chronologically: loss of sensitivity to temperature, fatigue, 2 lightheaded episodes without tachycardia, 2 sporadic tachycardia episodes in 1 year, increasing visual disturbances,"anxiety" type behaviors, resolution of lightheadedness, no tachycardic episodes and no anxiety for 1 year, low potassium, shortness of breath tachycardic episode, increasing fatigue, indigestion, blood pressure abnormalities, increased lightheadedness, fainting type feeling, daily attacks, diagnosis, medication, buzzing senations in feet, weakness. I would say total onset took 4 years. As far as I know I only have pots and do not yet know which kind.

Puppylove those caramels are sooo delicious.

This phase of the month is usually the worst for me. I decided that I wanted to make this month different. So, I have been on my feet for the past 3 days. And today, I stood on a chair and washed my celings and walls for over an hour! With my hands above my head! It was awesome and I haven't had that type of exercise in so long! I don't know what my hr rate was but I'm going to guess 160 just because I am so out of shape. When I decided to stop my hr was 130 and then began to slow down. I'm sure ill pay for it tomorrow but it was so worth it. Hoping to try and start jogging soon. Maybe I can beat this pots business. also, wanna thank jangle for the inspiration! And of course everyone else on here for being so supportive!

usually 3-4 liters mixed with gatorade, on a bad day i pop it up to 8-10

I used to go whenever I had wacky bp or bradycardia. Now, if I'm feeling like I need to go in, I just go to urgent care to get an ekg and a bag of fluid. To those who go, what do they do for you?

Oooh that is a good idea yogi

Its hard to admit, but i believe it. Yet, i still think this is related to systemic sympathetic overactivity.

I realized last night that during my first undiagnosed pots flare up, i started eating a lot of garbanzo beans. There was just something in them that i craved. I had some last night and within 20 minutes was bouncing around the house not even thinking about pots. It was shortlived but i am definitely going to incorporate this into my diet again. I looked up the nutrition online last night and they are full of all kinds of good minerals like phosphorus,manganese, potassium, magnesium etc.

i take salt shots 1/2 teaspoon of salt dissolved in 3 oz of water. It gives me an instant 2 grams. If you are a cocktail fan, you could chase it with a lime

Ssri took away my night symptoms.

Good stuff

Anyone with ear issues should look up the epley manuever, i've found it gives me some relief...

You know what bothers me even more about this?! That cats are closer to the ground in their stance and shouldn't have to compensate as much for gravity as us... Another separate idea to note is that there is a lot more testing on animals because of the ethical issues involved with doing certain types of testing on humans...

Can you expand for me on your symptoms that occur during the night?

anna, that is a fair concern. Kimbell, from what i understand he is a researcher at NASA who created a program called the levine protocol and it is supposed to "cure" pots. Ultimately, it is an exercise program and he states that everyone with pots has small deconditioned hearts leading to their symptoms (this is quite controversial as many with pots were conditioned at their time of onset). He does not help this controversy by labeling us with the negative stigmatization of "grinch hearts" However, there is supposed to be some type of curativity with this program.

For those who think are receptors are being blocked:

http://en.m.wikipedia.org/wiki/Clostridium_botulinum

Also horse dysautonomia http://www.merckvetmanual.com/mvm/index.jsp?cfile=htm/bc/100805.htm

http://www.peteducation.com/article.cfm?c=0+1275+2025&aid=3366

Bacteria from decaying flesh could cause dysautonomia in dogs...health care people? I need to do more research on this.

Here it is: dysautonomia in cats a.k.a key gaskell

http://www.petmd.com/cat/conditions/neurological/c_ct_dysautonomia_key_gaskell_syndrome#.TyOz4mfCuUG

Another thing to note is that these "naps" bump me up to sleeping around 14-16 hrs. per day

Hey doozly, what did you mean about beta blockers and mast cell?

Hi! I used to have centralized chest pain that I was sure was my heart until my doctor poked it real hard. It was definitely costo, but it wasnt severe and went away on its own.