List- "underlying Dysautonomia Causes"

[spinner]

Impressive list, and thorough explanation of each. Most helpful to newbies but many of the veterans will run across something they hadn't been aware of

http://www.dysautonomiainternational.org/page.php?ID=150

ONE example of something I hadnt seen:

Sarcoidosis
Sarcoidosis is an inflammatory disorder in which the body's immune system causes too much inflammation and then the build up of immune cells in organs such as the lungs, eyes and liver. Sarcoidosis can also impact the nervous system, and in some cases this can result in symptoms of dysautonomia. Approximately 60-70% of sarcoidosis patients go into remission without treatment, but in rare cases, such as that of American comedian Bernie Mac, sarcoidosis can be fatal.

[looneymom]

This is a good list to show your doctor. Wish this had been available when I started hunting down my son's underlying condition. Here is another article about the role of infections that play into the immune system. Most all of these infections affect the heart or nervous system. Maybe it will be helpful to someone else. Let's keep this post going.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/

[kayjay]

Missing from the list in my opinion is celiac disease.

[Katybug]

I would vote to add Lyme and Lyme coinfections to this list as well. In the Lyme community, POTS/OI is often listed as symptoms now.

[bellgirl]

Mitral Valve Prolapse, too, Spinner, can be a contributor to SVT, and dysautonomia/POTS! This is a great list!

[spinner]

The biggest challenge when sudden onset happens is diagnosis.

I believe stuff like celiac is a result of dysregulation---spillover into your digestive/cns etc.

I had sudden onset allergies after getting sick.

One advantage of having a POTS doctor is that they can order antibody and inflammation tests to

confirm whats going on. They need a case history and possible cause to make an educated guess.

[Goschi]

Thanks to everyone - for the link to the list and the additions!

I wonder, if there are some typical causes for very gradual onset, or - asked the other way round - if some causes are excluded, if you have gradual onset?

[looneymom]

Hi Goschi,

I have oftened wondered about this with my son. He had his walking pneumonia in December 2010 but no doctor caught recognized POTS until August the following year. However. between those months my son kept having bacterial and viral infections. As I think back on this time frame, the doctors were concentrating more on the infections and virus and not taking blood pressures. I'm thinking his POTS was maybe a gradual thing because his immune system just could not keep fighting the bacterial and viral infections. This kinda makes sense since the antineuroal antibodies were found in his body.

[Goschi]

Hi Rachel,

I know, in a retrospective view it is always difficult to reconstruct what showed up first and what may have been chicken or egg...?

How is your son doing on plasmapheresis, did he already start? I keep my fingers crossed that this therapy will help him eventually!!!

Concerning his antineuronal antibodies, would you be so kind to write which ones exactely were found in his body? I am getting back some lab results from my hospital stay now and would be curious to compare. Thanks in advance!!

[EGorman]

How do you know if your Dysautonomia is by itself or caused by something else? I have not had any luck finding a doctor, so I'm trying to find all the info I can by myself. There's so much!

[bellgirl]

You have to go to many doctors to figure that out, EGorman, sorry, but that's just the truth! Research, research, research!! Then go...and make sure you take others recommendations before you do, and still, don't believe everything you hear either. This site is a great place to start!!

[looneymom]

Like Bellgirl said, you have to research, research, and find a doctor that believes there is an underlying cause. When my son was first diagnosised with POTS, our cardiologist told us it would take about a year to figure out what would keep Tyler going. Tyler had lots of ups and downs that first year. He was even up walking and standing the last 3 months of that first year. I thought we had figured out what would keep Tyler up and going. However, his POTS condition kept getting worse and our cardilogist finally realized that infections and virus were part of the problem. If you have an illness or problem that keeps repeating itself over and over again. That's a key thing to start researching to see if it is related to any of your POTS symptoms.

Goschi

Tyler had high Dopamine 1 and 2, Tublin and Cam kinese. These have been found in patients that have had Rhuematic fever, Syndahams Chorea, and autoimmune movement disorders.

[TCP]

Good list. ME isn't there and many people with ME seems to get it although there is debate as to whether they have POTS and not ME, but I don't believe this. In my case I had ME some time ago and the symptoms of dysautonomia and POTS came on 7 years ago. Both are maybe linked to the EDS I realised that I had and that is on the list.

[blueskies]

Thanks for the list, Spinner.

[blueskies]

Hi bellgirl,

early on in the article it mentions that POTS used to be known as Mitral Valve Prolapse Syndrome (I think it said 'syndrome').

I now have mitral valve prolapse . Something that was not detected until very recently.

I was diagnosed with pots about 8 years ago and was astonished that I would develop MVP after pots symptoms but not before. I'm confused. But have to wait until October to talk it through with my pots specialist. I see you were diagnosed with POTS and MVP in the same year. I'm wondering if my pots specialist missed my MVP.

I'm no medical giant, that's for sure. But a very well regarded migraine neurologist hear a 'murmer' in my heart about 14 years ago. But nothing was made of it and I just accepted I had one. Then when I first saw my POTS specialist before he diagnosed me (it took a month of tests after first seeing him until he gave me my diagnosis), after he listened to my heart I mentioned I had a murmer apparently and he said I didn't. One specialist disagreeing with another. Okay.... But now, 8 years later he finds I have MVP? This has been playing on my mind, -- I did have a mummer, I don't have a murmer, but now I have MVP?

But I have to wait until October to bring it up with him.

I thought a 'murmer' could indicate MVP? Any observations about this would be appreciated.

blue

[imapumpkin]

bellgirl- if MVP could be a cause of POTS, would it stand to reason that once the MVP is repaired or the valve is replaced, POTS would improve? I underwent a mitral valve repair surgery a year and a half ago at age 25 and my POTS has not resolved. Much has improved but my heart is doing very well and my POTS is not.

blue- You may not have developed MVP after your POTS diagnosis, it -- many people go their whole lives without even know they had MVP. You can have MVP with or without an audible murmur. I was diagnosed with MVP at age 19 but there was no murmur until I was 24...only months before I needed repair surgery. Murmurs can be cause by many different factors. They were hearing what they called a "rub" right after my surgery because I developed pericarditis (inflammation of the pericardium) from the procedure. in general there are many things taht could be causing the murmur, and the murmur can come and go depending on the cause.

[bellgirl]

You can have POTS without a MVP. You can have a MVP and not have POTS. Do they go together? Yes, sometimes?! All I know is that I believe that I've had a MVP since birth, and they never caught it before this...which makes me wonder about all the doctor's I've gone to over the years. It is familial. My brother was diagnosed before I was, but it, too, was later in adulthood. He is 3 years older than I and doesn't have POTS or it is undiagnosed. A simple echocardiogram diagnoses MVP, but sometimes it can be auscultated (detected by stethoscope).

If you've been to a cardiologist, they should have picked up on it, but the first one I went to, did not. They watch and wait. If it is bad enough, they do surgery on the valves like you had imapumpkin. When the valves between your atria and ventricles are not formed properly, there is regurgitation of the left ventricle back into the atria, when the blood from your left ventricle is supposed to be giving oxygenated blood to the rest of your body from the lungs, so it isn't efficiently pumping your blood, and if you are hypovolemic on top of it, that's a real problem. I drink over 80 ounces of water a day, and that's still not enough for me, that they finally put me on Florinef. It's made a world of difference. I gained 3 pounds of fluid in a day. I tend to have yo yo blood pressures, so I think there was a reluctance there because of that. I can be very hyperadenergenic/hypertensive. I have Pure Autonomic Failure. I've now had it for 16 years, but only diagnosed 3 years ago. If I had been a year older they wouldn't have tested me, because I would have been too old!! I'm 57 now.

[blueskies]

Hi Kim,

Thank you again for your input. Nine years (prior to my diagnosis) a cardiologist did not pick up either POTS or MVP although my POTS symptoms were very evident. A neurologist did not pick POTS up around that the same time (I was seeking treatment from him 4 migraine) and when I told him I had been diagnosed with POTS HE immediately said I could have PAN and questioned who diagnosed POTS but backed right off when I told him the doctor's name.. I wish I could ask for my money back from both the cardiologist and that neurologist. lol. I can see now that MVP or not have been present. Just 2 months ago my POTS doc heard it through a stethoscope and ECG Confirmed it . Thank you for the detai you put into your posts.

Blue

[blueskies]

Thanks Imapumpkin,

Your explanation of MVP and murmurs, (sorry couldn't spell murmurs yesterday to save my life and auto correct ain't helping,) makes sense to me.

I have an aunt with MVP ( just found out) but I have long thought she has a form of dysautonomia. I mentioned that to my mother only recently and her response was quite distasteful. Told me that her sister was always sick and rolled her eyes. I guess that's what my mother thinks of my illness too. It was an uncomfortable moment.

Blue

[bellgirl]

Sorry your aunt has MVP, too, blue, and could have undiagnosed dysautonomia, too. Your mother's attitude needs to change. I will remember her in my prayers. There is nothing worse than a family member not believing you have an illness. I dealt with too many doctor's, too, who didn't think anything was wrong, that I gave up trying. I went to a neurologist, cardiologist, rheumatologist, and ENT, then I waited until my health was failing terribly 13 years later, my husband was out of work, then part time, so we had our own insurance, which wasn't very good. Thankfully, he went back full time, and it was just in the nick of time. I was so dizzy that I was misjudging curbs and wrecked my car twice. I found my first doctor on the internet after much prayer, who really believed that something was wrong with me. In fact, he had done a thesis on autonomic vertigo, low and behold, and sent me to the Autonomic Disorder Center of Alabama in Birmingham and the rest is history. It was truly God's doing. How could I ever had known. It was his father that had the testimonials written by other patients about him, but I made the next available appointment, and it was with his son, Dr. Pappas Jr. He's one of the nicest doctors I've ever met!!

[blueskies]

Hi bell girl, thank you again for your response. I have written and lost two posts to you this morning. It's a pots fog day. I'll try again later. Basically just wanted to say that you always have meaningful experiences and information to share. And that I appreciate it.

blue...... now to post without losing it......

[bellgirl]

You are too funny, blue. Your post was not lost; I can relate to those fog days! You are quite welcome. Pm me with any questions or concerns. I am a retired RN, so I can always help to at least explain some medical issues that we share, anyway.