Lemons2lemonade

Sometimes I feel like pots is slowly torturing me..its weird because I'm not really in any pain (other than the periodic chest pain) but I am still absolutely miserable. And I can't decide whether I like the good days because they give me a break, or hate them because they make going back to a bad day that much worse in perspective....its like a never-ending tease of normality. Does everyone with pre syncope black out? Because it doesn't feel like I am going to "black out" as much as it feels like one of these days I'm actually going to leave my body during one of these stupid episodes and I'm not coming back. I guess I have blacked out before but this leaving my body business is no bueno.

It seems like whenever my pots symptoms flare up, I get this feeling all over my body. The best way I can describe it is a "funny bone" sensation only not as intense and all over my body. If hitting the funny bone is a 10 of this feeling, this would be a three or four. It doesn't hurt it is just annoying. It also seems like when this happens my head feels scrambled--like if you cross your eyes and look up. Does this happen to anyone else?

Clearly, for those of us in this group the low potassium could be a marker. I would love to know some more about the people in this group.

This doesn't surprise me actually. Potassium is a very important chemical in our bodies. Every nerve signal in your body is carried by sodium and potassium exchanging flows to create the electrical charge that sends messages. I was thinking about this the other day. I was thinking of the nervous system as communication technology. Sending messages through the neurons is like a land line and sending messages via hormone (epinephrine) (norepinephrine) is like wireless. (It seems, like we are using our wireless more than our landlines with pots.) Brain: can you hear me now? Veins: no!!!!!! ) Something else to consider is that every cell in our bodies have channels on them to regulate their own homeostasis. From what i understand, the sodium concentration tends to be higher in the fluid surrounding the outside of the cell--and the potassium level higher on the inside. There are supposed to be sodium /potassium pumps in the cell that create this difference across the cell membrane. This link is a an excellent demonstration: http://highered.mcgraw-hill.com/sites/0072495855/student_view0/chapter2/animation__how_the_sodium_potassium_pump_works.html

This link also easily explains the function: http://en.wikipedia.org/wiki/Na%2B/K%2B-ATPase

If the cell doesn't have the appropriate amount of sodium or potassium, there's gonna be problems.

I keep a list of all the things that can cause pots, and it really is endless, no wonder researchers are having some difficulties.

But a couple of them relating to this topic are

1. The sodium potassium pump in the cell isn't working properly

2. The epithelium(absorbent cells) in the intestine aren't absorbing properly causing low potassium

3. The kidney's are excreting potassium in the urine instead of absorbing it (makes me think of the post on aldosterone being the biochemical equivalent of florinef--which causes us to retain salt and lose potassium)--so do we (potassium deficients) have higher than normal levels of aldosterone? And if so, why and what is it compensating for?

4. There is an underlying circulatory problem that prevents potassium and other nutrients from being readily available from plasma to the cells.(however, the fact that potassium is low in plasma, means there is an issue in getting the potassium into the plasma)

5. The earth is shifting its magnetic field in preparation for 2012 and it is messing up our bodies ( i use this one just for fun )

My bet is going to be the kidney's--there's a reason our potassium is low, and i'm gonna bet they are the culprit...

Hmm wouldn't say better, things are just much worse when its low

Allegedly, you need lots of salt to make the florinef work. I take 1/2 tsp a day in 3oz of water. Monitor your bp though, one time I upped my salt to 5g and my bp went up almost 50 points. Take it slow until you find what works for you.

Julie, that happens to me a lot especially the faces thing--I know what you mean but I can't pinpoint it. Also, I have gotten lost driving home more.than once and have to stop and remember where I am. I have also had an incident where I was unable to speak for a half an hour--it was like I had a stroke. Have you started any new medications recently that could be causing this?

Issie, I take potassium and it helps a little but pill form is very hard to digest. I mean you can see it clearly and untarnished in your stool. There is a powder form, but its a bit pricey. In the mean time I eat lots of.bananas. and I can always tell when my potassium is low. Things stop functioning as well neurologically.

Rama, I think you and I have the same issues with pots. Low potassium was also my only abnormality

Before I was ill I could not see my veins. Since then, they have become more.prevalent on my chest and up my arms--specifically from te breastbone and up to the shoulder

Out of bed, normal

Symptomatic very small, especially in my wrist

They look medium when I'm up and moving around, feeling well

People.have troubles getting into my veins. The techs always ask if I am dehydrated. I always giggle and tell them I am on medication to retain water.

Rama, where do you find this info?

Found this on vanderbilt's website,though I am sure many of you have read it,it seemed like a succinct break down of pots types and current research. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

Anyone ever been tested for this?

For those of you with low potassium, do you know what type of pots you have?

I have had low potassium ever since my issues started--wondering if anyone else did?

Also are you a milk drinker? Vitamin D comes from sunlight and is fortified in milk to help with deficiency. Vitamin D is necessary for calcium to be used within your body.

northern: http://www.nlm.nih.gov/medlineplus/ency/article/003480.htm (albumin is made in the liver and low levels can indicate liver dysfunction, high levels typically only mean dehyrdration) You are right though, it also involves the kidneys.

Plasma volume is the measure of volume of plasma in the blood. Plasma is the liquid portion of blood consisting of various inorganic salts, such as sodium, potassium, calcium, and proteins; the solid portion of blood is composed of cells. Normal plasma volume in an average adult is usually 3 liters, while total blood volume is about 5 liters.

http://spaceflight.nasa.gov/history/shuttle-mir/references/glossaries/science/sc-gloss-n_s.htm

rama, i love your posts! Thanks for going out and finding this info! How ridiculous would it be if some of us only had an ear problem?

Hi Tinks! I am sorry to hear what you are going through. I know little to nothing about EDS. But, i do know about lesions. I have 3! Lesions are areas of your brain that have been damaged. The posterior fossa, i believe, is a part of your brain and is located around the cerebellum by the brainstem in the back of your head. Lesions are areas where there is essentially scar tissue on the brain. There can be a numerous amount of reasons for lesions. They can be caused by brain injury, vascular impairment(stroke), or possibly immuno attack of your brain tissue (such as multiple sclerosis). In fact, a lot of people have lesions on their brains for unknown reasons. I hope this helps, and i hope that you get some answers.

have you had your liver function tested?

I have tried metoplerol, midodrine, methylprednisolone, and florinef. The flornief works best for me, i love the stuff. It has almost completely eliminated my tachycardia and dramatic pots events.(I still get lightheaded at times, but not nearly as bad as it used to be) I also take celexa, which helps me relax and get those crazy pots hormones under control. One other thing to note is that i was on metoplerol to begin with and for awhile (6 months) it worked well, but then i think it made my pots dramatically worse.

Naomi, i think the problem with this is the nature of the health care system. First of all, doctors are paid by insurance companies to do what is within profitable limits. If the insurance companies or doctor's offices weren't making any money, then as per capitalism they would not exist. So you have to remember that a dr's office is there to make money--its a business. And in that mindset, doctors usually have a lot of patients. If you have an HMO they probably have even more. People in that profession can not take their work home with them. If they did, they would go insane--being around sick people isn't easy, and telling people you can't help them is even harder. So, the problem is that there really isn't time for them during their work day to investigate such matters. In addition, companies aren't paying typical doctors to do research, they are paying them to get people in and get them out--hopefully with a prescription so they can make some more money. And in reality, if i have the flu, a broken arm, or an infection this practice works--its only for us rarities that the system doesn't really help. Another thing to consider is that research is done in areas where coming up for a cure is profitable. For all we know, there is a cure to pots, but the makers of florinef and midodrine bought out the patent, so that it would not be available on the market because they can make more off of the other two drugs (this is very conspiracy theorist though ) Essentially it comes down to the fact that there is a difference between dr.s and researchers, and unfortunately they coexist sparingly. But, don't be afraid to be frank with your dr's. If you ask them for something and they say "no" ask them why they believe that, and then explain why you believe what you believe--and always make sure that your requests are reasonable by performing research first. I asked my dr. for a small fiber neuropathy test and his response was, "you don't have neuropathy". So, i sent him 5 scientific journal articles regarding the connection between small fiber neuropathy and pots. Another time i had a young "know it all" dr. in the e.r. who insisted that i was wrong and even said mockingly "what do i know, im just the one with a medical degree." My response: "Great, you have a medical degree, what do you know about pots." Dr.: uuuuhhh your heart beats fast Me: wow, did you just look that up on wikipedia? You know nothing about my disease, so don't pretend that you do. (I was admitted soon thereafter). It stinks, but you have to keep fighting them for what you think is right.

rama, please keep us updated, this is very useful info, thank you for sharing!

I have taken methylprednisolone and oral predinsone packs over the years. It seemed that when i took it after what i now know was a pots flare up 3 years ago it helped. But now that i know what i have, it was probably more likely the urinary retention i.e. bloating that steriods cause that helped and not the actual steroid itself (thus flornief is probably more effective). The flare up that i am currently on began on october of 2010 and was the reason i was finally diagnosed. Since this time i have had two oral prednisone steroid packs. And also was given three bags of intravenous methylprednisolone. The intravenous doses were given in june and they made me much worse. However, i have noticed that my activity capabilites have been improving slowly, so don't know if its related to the steriods or just a good couple of weeks.

This is a good point. When I first started exhibiting symptoms 4 years ago, i realized I was holding my breath all the time. After trying not to breathe whenever i would.get a spell it would.go away. Now though, that doesn't work. However the past few weeks I keep catching myself sleeping with my head under the covers which is.something I had never done.before.

I love this, thanks brightening my day! Maybe if we all post on the same day it will work!