jangle

I think in a few years they're going to discover an entirely new autoimmune disorder that causes POTS.

Until then, what are we supposed to do?

i wish exercise protected me against relapse. Despite what some might say it doesnt in my case as I was running 5kms three nights a week the week this relapse came on.

Did you see the new Levine article? http://hyper.ahajour.../58/2/167.short

I won't share my more descriptive thoughts and language on this, but I am shocked the AHA published it. Excercise can cure us all because we ALL have small hearts. Yeah right.

Tonight I'm feeling a strong remission. I seem to be like 80-90% better at night these past few days but I'm horrible during the day.

Looks like the goings good for me to find a girl named bella and have a hot multibillion dollar hollywood romance.

I did a sleep study but I only slept for 2 and a half hours. Still he said I didn't have any sleep disorders, but I wonder if I really slept long enough to definitively tell.

I just got back from reading it.

31% of patients were asymptomatic after 8 years.

59% of patients were significantly improved after 7 years.

13% had no relief after 8 years.

So roughly 1 in 3 will have a complete remission, most will have a significant improvement, and it's rare to have no improvement.

We should start a thread about success stories? I'm sure there have been people on this forum who've gotten better and perhaps they've stopped coming back.

What activities do you enjoy or what things do you do during the day to have fun?

Lemons, I think I read somewhere that most people with POTS do recover. Something like 50-80%. There was this study done recently, http://www.ncbi.nlm....pubmed/22190289

I only have access to the abstract, but I can go to campus and review it there tomorrow and see what percentages they were reporting.

You can get better!

CfMartin, also I'm curious, when you got better was it a light-switch type thing, or did you gradually acclimate out of POTS?

Lemons, I've never been inpatient before, but sometimes I wish I could just go away for a while and have someone figure this thing out. It always seems like a losing battle to try and combat a chronic illness in a 15 minute time window. I was seeing a neurologist, a fairly high up one at that - he was a professor at a prestigious medical college.

Thanks for the website CfMartin, but I don't know. Yes I would definitely have difficulty getting the funding to go to a specialist specific to POTS, but really I think there are only 2 or 3 such people in the country anyway. Raj at Vanderbilt, Stewart, and Grubbs. I'll look at what I can do, but I just don't know how feasible it would be for me to travel very far from where I live.

Of all the things you have, I think the pernicious anemia is the rarest in your age group. It's probably somewhere around 1 in 10,000 for your age group. I know that speaks nothing to comfort you, but just a random insight that might make you shake your head at it all and wonder how it is you got all these things.

But anyways, certainly as you are aware these symptoms are not due to anxiety or "all in your head" there is a very real physiological mechanism at play behind all of these things. I'm sure since you've been to the Mayo Clinic they have already tested you for autoimmune disorders. There very well could be an underlying autoimmune mechanism that medical science hasn't discovered yet, but there is no sense going into steroid treatment for something as of yet unknown.

The first thing I would suggest for you to do is order a G-Suit. I haven't tried this myself, but there is a website here: http://www.oiresource.com/design.htm where a person with orthostatic intolerance found immense relief from a G-Suit and was able to go from bed-bound to homebound. This might allow you enough relief to move about the house. I would have your husband look into it as well as it might very well be a good option for you.

Next thing, perhaps you can talk to some of the doctors at Mayo Clinic for possible stem cell therapy? Since the nerve dysfunction has been localized and if you perhaps have some sensory neuropathy from your pernicious anemia, there might be a role in regenerative medicine to heal some of your nerves and ease your pain. I'm not sure if medical science has yet produced a viable stem cell therapy for nerve dysfunction, but there are centers in China that would be willing to experiment. I know this isn't a likely possibility, but it's just really the only thing I can think about, I'm sure if there is something the Mayo Clinic doctors would know about it. Besides, it can't hurt to ask?

I hope you get to feeling better, I'm sorry I can't be of much help, I just don't have many answers. You sound like a very strong person, a person who has taken care of others and now it is time for people to take care of you.

I've never gotten iv fluids. It seems like this sort of thing should be more accessible.

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/

LOL Thanks for the picture. It does make sense that everyone has some vasovagal sensitivity, but for us it is entirely too sensitive or over-reactive. I'd think the eye contact sensitivity would be kind of cool if it weren't so awfully painful.

Maisya: It's interesting to think that POTS can be caused by either sympathetic or parasympathetic dysfunction. Either way, I wonder if there could be some underlying enzyme deficiency that is causing our symptoms.

I've tried researching the topic, I know mestinon is an inhibitor of Ach-enzyme and that seems to help POTS patients, but that drug works on both the parasympathetic as well as sympathetic nervous system. I have to think there is an enzyme that is specific to the parasympathetic nervous system, and that is the enzyme that if treated, might yield a treatment for a large segment of POTS patients.

EDIT: I read on Lemon's blog this study:http://www.clinsci.org/cs/110/0255/cs1100255.htm

I'm beginning to think the enzyme we are lacking is the angiotension-converting-enzyme (ACE). A lack of ACE would lead to higher levels of circulating angiotension in our bodies (angiotension I and II). Perhaps if we upped our ACE levels, we would decrease the symptoms of POTS?

I always have a sort of background lightheadedness, but I find that it is triggered by my anxiety disorder. (in places where escaping would difficult i.e. classroom settings)

In the past 6 years that I have gone to school full time, I've had thousands of "nearly" fainting episodes but I haven't actually fainted. I was wondering if anyone else notices their lightheadedness gets much worse with certain triggers and could this be a vasovagal response? (I notice I yawn a lot during my "events")

I ask this because I recently saw the results of my TTT as well as some interesting insights from my doctor. It said that the results of my TTT indicate that I have mild parasympathetic dysfunction. It also said that "inherited POTS can be caused by enzyme deficiencies"

I found that line the most interesting, it is true that I have a family history of autonomic dysfunction. But I have been researching this condition for a while now and I haven't seen anything about enzymes and parasympathetic nervous system dysfunction. I wonder if my doctor had access to some source that I don't, and if he does if it would be possible to supplement that enzyme.

My upright norepinephrine was normal and my TTT said that I have normal sympathetic nervous system function.

This makes sense that my parasympathetic nervous system is dysfunctional as I also have Raynauds. I wonder if there's any specific treatment for the parasympathetic nervous system?

Pacemakers in our future?

Florinef discontinued due to side effects, doctor fired me as a patient. Go followup with someone else in the wasteland (Fallout 3 reference).

Don't know what to do. I just have this feeling like I just want to go into a lab. Go into a lab for three or so weeks and just have all the potions and literature and science and just experiment. Experiment on myself and figure something out. You know. Actually figure something out. Instead of just sitting in my cell here, suffering. Waiting.

Having POTS is the most difficult thing I've had to deal with. It really ***** and hurts even worse that there doesn't seem to be a lot of knowledge on the subject. However there are far worse things in life soit is a matter of perspective

I find it harder to concentrate and my attention span is much shorter. I'm not sure if it's the Florinef or the POTS in general though as I was diagnosed pretty quickly and put on my meds within a couple of weeks of it getting really bad.

I do find that it's given me bad skin though and I've gained some (much needed) weight.. and I'm also hungry all the time now! I'm take all that though because I'm up and walking around now.

Sif have you found that your cognitive symptoms have improved with time or stayed the same?

I think this is a medicine that only treats symptoms, not the underlying causes. Therefore you will probably have to take it indefinitely.

Wow, I'm taking 4 times the dosage you are, I'm at .1 mg.

Lemons, I guess we have to resolve to looking at the positives. Long term follow up studies do show that a significant proportion of people do improve and that can very well happen to us. In terms of pushing the physiological barriers, I don't know what long term effects that might have on us, but thusfar no significant trend has been reported, so I don't think significant long term damage is being produced. This is evidenced by the people on this forum who've had this condition for decades.

I think it's reasonable to expect symptom relief, and I hope you find the doctor with the right expertise and ability to give you all the medical world currently has to offer. Feeling better should be possible, and I hope you do.

Since starting Florinef roughly two weeks ago, I've noticed a considerable improvement in my lightheadedness symptoms! I've been praying every night and began reading my bible again, it's perhaps not very relevant but it makes me feel so much better thinking god is with me in my recovery.

I'm very pleased with the reduction in lightheadedness and subsequent return to personalization. I feel as if I'm coming back to reality sort of speak. I guess my last sentence is something only someone with POTS would understand.

However I have noticed some side effects. I'm finding it more difficult to concentrate, specifically I'm finding my thoughts are weaker and there seems to be a sludgy kind of heaviness feeling when I try to think. It began roughly 4 or 5 days ago is when I really noticed it. I don't know if it's depression or what is going on, I'm wondering if anyone has had this kind of side effect with Florinef and if it might go away.

For now I turn to prayer, which is really all I have and all I ever need.

Does anyone have any further information on this? I recently got a flu shot and although afterwards I read on Florinef's FDA page not to get vaccines as neurological complications could result. What kind of neurological complications can result and is this relevant to the flu shot vaccine?

Ill talk to my doctor about this. Although I doubt he'd prescribe it for me. Im not sure if it's safe though although I see no reason why it wouldn't be.

If you're having periods of sudden amnesia I would get with a rheumatologist because you might be having some autoimmune thing going on in the brain. While largely unknown, brain involvement in other autoimmune conditions tend to be reversible with steroid treatment but it can be obviously scary in the mean time.

The thing you're describing upon waking up/ falling asleep is actually somewhat common. People can hallucinate and/or suffer from amnestic like events during sleep/wake time due to transient alterations in brain waves.

Before I had pots I used to get visual hallucinations before going to sleep every once in a while that completely freaked the **** out of me. Until I realized it wasn't anything serious.

I read on a blog somewhere about a person who was an MD with pots and EDS so I would say yes it is possible but probably depends on the extent that your condition responds to medications.