Lemons2lemonade

Hi there! I'm sorry to hear about your troubles. Pots is diagnosed by a tilt table test. You can do one yourself by checking your pulse and using a blood pressure cuff. If you are orthostatic, which it sounds like you may be due to your past experiences it could have a number of causes. The first is that it is possible that you could have been dehydrated. Was that the only time your pulse did that, or is it happening frequently. Lay down for 10 minutes, check your pulse. Then stand up and check it again and see how much it rises. It is normal for everyone's pulse to rise, but if it is over a certain amount of beats per minute you could have pots. General malaise is unfortunately not good diagnostic criteria. If i were you there would be some tests that i would do before paying the money to see an autonomic specialist. The first would be heart related. I would look into getting a referral to a cardiologist. They are the ones who do the tilt table test anyways. While you are there i would get an echo to make sure that there aren't any structural abnormalities. The fact that you had sinus tachycardia means that it is probably that you aren't having any dangerous arrythmia type issues going on--which is good news! Also, simply drinking water doesn't necessarily help dehydration--you need electrolytes like salt and potassium to help retain the fluid. Also, avoid diuretics like coffee, tea, soda etc. Something to note is that you could have parkinson's and pots. My other questions would be whether or not you have had brain m.r.i. done. If it were me, my guess would be cardiac or neurological...It would probably be worth your time to get your kidneys tested as well, have you heard of addison's disease or cerebral salt wasting syndrome?

Every medication has side effects :/. I was convinced that while taking an ssri i was going to flip out and kill myself or something. But it wasn't like that at all. Something else to consider is that i think pots has a lot of side effects! My favorite one is the flornief side effects: diabetes, congestive heart failure, psychosis, and blood clots--yea fun right?!

Hey firewatcher, are the cousins from the same parent? Same gender? And not to scare you but I have heard there is a lot of anyeurism issues with marphan but I'm pretty sure you would know if you had marphan by now...

I was told once by a doctor that there was nothing they could do for me if I couldn't take Florinef, and that I would probably be dead in the next couple of years!!

Oh my gosh! That is just so ridiculous.

There could be a couple of issues here. First of all it took 2-3 months to really start making a difference with me. Second, were you taking salt while using it?--my Dr. said that it wouldn't work without salt loading (because it exchanges sodium for potassium in the kidneys causing fluid retention). Third, you can always double the dose to .2 mg. That is the dosage I take. Another thing is that my hr didn't start going down until I was on florinef and an ssri. And with me, it was just finding the right salt dosage. One time I took 5g instead of 2 and my bp was 145/100 normally 90/70. I now sit around 115/79.

Anyone here have relatives with kidney disease, marphan syndrome, or preeclampsia?

"The arterial pressure of the adult human rarely deviates from normal by more than 10 to 15 percent during each day. To achieve such constancy, the body has a network of pressure control systems. Several are based on neural receptors that respond within seconds to help correct any abnormal pressure. The activities of these systems are followed within minutes by activation of hormonal controllers. Within hours or days, a kidney pressure control system is induced that increases body fluid volume when the pressure falls (or decreases the volume when the pressure rises). This kidney-fluid system is the dominant method of establishing long-term pressure control."

http://www.sciencemag.org/content/252/5014/1813.abstract

Blood pressure control--special role of the kidneys and body fluids AC Guyton

Science 28 June 1991:

Vol. 252 no. 5014 pp. 1813-1816

DOI: 10.1126/science.2063193

Oooh i stumbled upon a gold mine! Check out these other abstracts from this website:

• Angiotensin II Increases Activity of the Epithelial Na+ Channel (ENaC) in Distal Nephron Additively to Aldosterone J. Biol. Chem. 2 January 2012: 660-671
  
• Histone demethylase LSD1 deficiency during high-salt diet is associated with enhanced vascular contraction, altered NO-cGMP relaxation pathway, and hypertension
  
• Both high and low maternal salt intake in pregnancy alter kidney development in the offspring Am. J. Physiol. Renal Physiol. 1 August 2011: F344-F354.
  
• 
  The WNK Kinase Network Regulating Sodium, Potassium, and Blood Pressure J. Am. Soc. Nephrol. 1 April 2011: 605-614.
  
• 
  The endothelial mineralocorticoid receptor regulates vasoconstrictor tone and blood pressure FASEB J. 1 July 2010: 2454-2463.
  

I know its only wiki, but it explains well, best part is the last paragraph. I think every potsy should know this info. Enjoy

http://en.wikipedia.org/wiki/Baroreceptor

as per rama, baroreflex is describing the capability of your baroreceptors- receptors in your circulatory system that send the signals for pressure changes i.e. constrict,dilate--to reflex appropriately to maintain adequate blood pressure. Essentially, i am gathering from this that ours are not working properly. Jangle, i think i remember reading somewhere that pacemakers can make it worse--our problem isn't our heart, its everything else, the fast heart rate is probably keeping us conscious by accommodating for the lack of pressure as best it can. A better question is, "why aren't the receptors working" que autoimmune disease damaging them and/or "neuropathy". I also have my own theories that other hormones, viruses,or bacteria are "stealing" or blocking the receptor sites. Blocking receptors is something that a lot of poisons do such as botulism, snake venom, etc. However, these types of blockages are usually quick, systemic and fatal. Wonder if there is something like this out there that we are not yet aware of that just hangs out in our system. My question is, "what do the baroreceptors look like on a pots patient."

doctor "fired you" as a patient? What type of dr. do you see, is it a regular general practice dr.? Don't know if your insurance has it but i see internal medicine, they are much better and used to dealing with weird diseases. Also, when you are inpatient in the hospital internal medicine usually is the doc that you see who sends in other specialists.

Yea! That is good news!

Absolutely, its ridiculous, do you think its more of an issue of good days and bad days though?

Honestly, i used to have this ALL the time, day or night. Until I started taking celexa. It has helped soooo much. I was really against it at first because it is a behavior modifying drug--but after taking it, i am more like my previous self than i ever was with pots. One thing i really noticed is that before i go to sleep, i am totally relaxed and sleep through the night, which is an indescribable change from where i was. And to be honest, i feel much more relaxed most of the time--especially during pots attacks. It has helped with the sweating, the panic feeling, and the adrenaline rushes. Plus, celexa is supposed to be a vasoconstrictor, so i think it is helping me with my pots as well. Also, i prefer it to some of the more opiate type sedatives because it seems to keep me balanced (whereas with barbituates i felt like a wave--up and down) and it is WAY less addictive. One more thing to note is that i was on a beta blocker when i first started it, and with the two of them, my pulse actually was slowing down too much 40's-50's. So, i was able to get off of the beta blocker (which is awesome) and just use the celexa and florinef. It surprised me that it slowed down my pulse so much, i didn't think that it would be capable of making such a difference, but it did. My quality of life is so much better now. Only bummer is that it makes you nauseated for the first couple of weeks, but promethazine or zofran really do the trick in controlling this. I hope this helps and i hope you feel better soon. There is nothing worse than waking up in the middle of the night feeling like you're running for your life from a tiger. If nothing else, i would try at least drinking 16oz of gatorade or water before bed. One more question, do you take a beta blocker? The reason i ask, is because i think the beta blocker was actually making my pots worse for awhile there (before i started the celexa). It was full blown attacks 3-4 times a day, every day, and all night long. I took metoplerol when this was going on. I think the beta blocker was actually lowering my blood pressure too much, triggering the "reboot" mechanism that we all despise so much. It was TERRIBLE.

Yeah, I think its red for pots an blue for dysautonomia. But i kinda think we need.something more original that will help people remember that this disease exists, having a symbol or catch phrase is more important than many think

I have seen the dysautonomia pin, but other than that? Like some sort of saying or image--other than snoop's "drop it like its pots"

Thanks jangle

I know what you mean. It really gets me when people I know or who are on Facebook complain about having a cold and how.miserable they are. I never complain about this around other people and most of my friends don't even know I have it. Imagine what these people would be like with pots! Not trying to toot my own horn here, but I'm kinda glad I got it rather than some other people I know. They would be in a mental institution by now. Not to be all religious but I think god gave this to me because he knew I could handle it--well at least to a certain extent And that kinda makes me happy

I take florinef and have that too- but don't know if its the meds or the pots. Steroids can do a lot to your body.

Yes it is. And I went to college, have gone 3 days before without sleep and worked 85 hours a week-- 56 of those being from 10-6 in the morning (same week I didn't sleep for 3 days, was working back to back shifts). I have run many long distance races from 5k to a 10k that was literally straight up a steep hill for 7.4 miles. And none of those things even come close to this. As for marriage and children, imagine life for people who have those things with pots--those people deserve an infinite high five.

I agree with paona, it needs to be looked at more closely. Question is, what do they mean by "nodule"

It could be the pots, i was just talking about this in the "i hate pots" post--i have been having a bad past 3 days too. Hope you feel better soon!

I have read a lot of comments on here about people who feel this detatched-out of body type feelings. I don't think it is dissociative or depersonalization, i think it is part of the disorder. I just can't figure out why my "soul" thinks it can just up and try to leave my body whenever it wants. The part of this that i find particularly disturbing is not so much the lack of continuation of the human experience but the fact that it feels like i am going to transcend into some etheral plane of existence. I mean, am i really leaving my body, or is my brain just imagining that? All of this makes me think of the dopamine issues that have been posted on here. Excess levels of dopamine can do bizarre things, in fact it is the cause of schizophrenia, so if we have excess dopamine floating around it could be the culprit for a lot of this. Honestly, when i first got this i was convinced i either A. had a brain tumor or B. was completely psychotic. However, if you think about it, our bodies basically are going through the process of near death all the time--i mean we are a category of people who really push the limits of consciousness and physiological function. And whenever an "attack" hits me, it feels like i am going to die right there.

apparently not

You know, I take salt every day but I swear there is a limit. If I eat something salty on top of this it can make me symptomatic within about a half an hour

Thank you Jen, i read your.post.and am hoping things will go better for you as well