What causes this crazy stuff?

[Guest veryblue]

I really would like to find out what causes this crazy stuff but am very confused in the process...I will never except being sick...and I know deep down inside that I will be one of the ones that recovers completly...(even my Mayo Clinic trained doctor said I would) but I need to know for myself what caused this to happen to me in the first place. I've heard of what triggers POTS to happen...is that the same thing as what causes it? I think some people are born with the genetic predisposistion to it, and if you are you WILL notice times in your youth that later when you are hit with full blown POTS make sense. But what about the rest of us out there? The ones like me that never have fainted, that have always had endless energy, that never had had gut issues or sweating issues or any issues. I swear I have I caount the times I've had the flu on one hand. It is too hard for me to except that one day I can be a college athelete and the next day out of the blue I will never play again nor be a functional member of this twisted society in which we live. I know something causes nerve damage...in my mind its an autoimmune reaction but what really is the reason. If this disease has been investigated for ten years, something should have come up. It is in my mind that the people who have this disease and get over it are the ones that have no genetic or constitutional underlying predisposistion. (No family history or problems in their youth) These are the ones that recover and the ones that don't most likely have had family issues or issues in thier past. Any thoughts or comments...if the people that live with POTS everyday don't try to figure it out and fight it then nobody will. The affected must take the first step! Everyone on this site should reply...also if anyone knows of people who recovered and I've heard the 60-80% do so somebody on here must have gotten well, I would like them to contact me at tashanator83@cox.net. Thanks and I hope to hear at least a comment from all.

[justme]

I would say that 60-80% is a very high number. My understanding is that if you have POTS due to a viral infection that your chances of recovering fully are much higher. By default, I think that would indicate that you can get better even if the cause wasn't viral. I have heard that people's symptoms can lessen as well. In my wife's experience, it has done nothing but got worse. She has good days and bad days. It also seems that medication that seems to work only works for a short amount of time and then something else needs to be tried. The other thing to be aware of is that several people have multiple dx. ALOT of times POTS is just adding to other conditions that exist.

I admire the fact that you are fighting this and trying everything you can. But, there are alot of younger folks out here that have a hard time accepting their illness for some of the same reasons. My wife as of age 30 could no longer work, has limited capacity to even do simple household chores, can't walk for any extended amount of time, has difficulty riding in a car, etc. She struggles with this stuff every day of her life.

[calypso]

Did you say you just started having POTS symptoms in November? I did too. But be patient! The one thing I haven't heard of is a super-fast recovery. My doctors have told me it can take as little as 9 months to as long as 5 years to recover. And the 60-80% figure is actually the number of people who have "improved" -- which means either these people have gotten used to coping with POTS or the medications are working, not because it just up and went away one day.

I don't mean to sound negative or imply that your POTS won't go away, but I don't think it's as fast of a process as you might expect. I think there are many issues going on in the body to trigger and sustain POTS, so each of those factors has to change before it will go away. That's why it's important to try to find the cause, which I am in the process of doing myself. I also agree that something autoimmune is going on with POTS, but we just have to be patient and see what research brings. 10 years is not that long to learn about an illness like this.

So hang in there and try to do some things to take your mind off being ill. I just rented the whole first season of "Curb Your Enthusiasm." I laughed my butt off. Everyone with a chronic illness should laugh more; it helps to relieve the stress.

Amy

[metoo]

I found a very informative website that has info on what can cause POTS along with other interesting info.Here is the list and link to the site:

http://home.att.net/~potsweb/POTS.html

This page passes on the latest theories and accepted "facts," but does not guarantee that better "facts" and theories will not make some items on this list obsolete in the future.

1) Viral and bacterial infections that damage the autonomic nervous system. Patients who develop POTS due to an infection, with no deeper underlying genetic cause, have the best prognosis for a spontaneous recovery over time.

2) The development of POTS in women after childbearing is very common and may be due to changes in blood volume during pregnancy.

3) Exposure to toxic chemicals which damage the autonomic nervous system. This group includes adverse reactions to prescription drugs. Some Gulf War veterans have developed POTS like symptoms after being forced by military leaders to take inadequately tested experimental drugs and being exposed to small amounts of nerve gas.

4) Genetically inherited neurotransmitter disorders, including disorders of catecholamine production and release, such as Norepinephrine-Transporter Deficiency.

5) POTS can be caused by peripheral nerve damage due to rapid weight loss, diabetes, and alcoholism. Doctors at the Mayo Clinic have identified autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia, which are believed to cause of approximately 10% of all POTS cases. Doctors at Vanderbilt University believe that some POTS cases are caused by a partial sympathetic denervation, especially in the legs.

6) POTS can be a phase in the gradual onset of Shy-Drager Syndrome.

7) Damage to the vagus nerve. There have been documented cases of patients developing neurally mediated hypotension and POTS after undergoing radiation treatment to the neck.

8) A mixed bag of less common potential causes, both genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS.

[Merrill]

Re: the last couple lines of original post -- I don't think people who feel better (or who have "recovered") visit this site anymore. And not everyone w/POTS has a computer and/or the personality or desire to chat in a forum like this one. You've got a very small sample here--of the 500,000 or so cases (I've read)... I think there's probably more (undiagnosed) out there.

As for me, I'm 42 and I've had it since adolescence with no known precipitating cause/virus etc. I know I have this condition, I cope with rthe symptoms as best I can without medications, and I live a good life. Handling the other stressors life hands us sometimes feels like more than I can handle--but I DO handle them. You can too--just relax, take life one day at a time, and do like Amy: rent season 1 of Curb Your Enthusiasm and watch it regularly when it returns in the fall!

[danelle]

Boy, I wish for a spontaneous recovery too!!! Unfortunately for me, that is very unlikely. I have has POTS(or the sx of POTS) for 18 yrs now. Not for sure what caused it but Dr Grubb is leaning towards the birth of my first child when the sx seemed to pop out with avengence!! All I can say is that I have NEVER been the same since. I do have some "good" times(good for POTS but by no means "normal") but for the past year or so things have gone down hill for me.

I will be curious to see how many people respond who have had a full recovery and I sure hope that sometime soon they do find a cure for this craziness because I do believe mine is also due to my genes. I have family with some POTSY sx but they are very mild, just enough for me to notice them.

Good luck and hang in there!!