Underlying Cause Of Dysautonomia

[Gemma]

Hi everyone. I was wondering if anyone here ever found out their underlying cause of dysautonomia. I wonder if its worse looking for it.

I have been to so many doctors and done so many tests and nothing so far. The only thing that my primary keeps on telling me is that he thinks i have adrenal insufficiency. However, the endocrinologist that ran the tests said they are normal. I looked at my results and my aldosterone is really low, like 6-7 on scale of 0-30. So this is one thing he is concerned.

I was thinking of maybe going to also see rheumatologist to get checked for lupus and stuff. But i don't know if its needed. I went to infection specialist recently and he said why did i come to him and that he cant do anything to me. I said that when i got sick i was told i have mono and maybe more tests need to be done, but he didn't know what to do. Later my immunologist ran ebv tests for me and it showed that virus is not active anymore. But i had to ask him to ran that test for me. This is so tiring asking doctors for tests.

[andy271160]

Hello Gemma

I suspect the end of the first line of your post is a really good point.

For what it is worth, I have spent over five years seeking a finite diagnosis, only to discover when I got it that it carries a terminal prognosis with life expectancy of just under 8 years from inception of symptoms. So am I glad i spent that time seeking knowledge?? its a tough one.

In the end life is for living and if you have anything better to do than sit in a hospital waiting room then I would do it.

Apologies if that is a bit blunt I guess I am telling myself off, but it might be worth a pause for thought on your side.

I really do hope that whatever you decide, it works out well for you.

Take all the care in the world

Andy

[Gemma]

Ohh, I am so sorry to hear that. I just cant believe you were searching for it for so long and doctors couldn't identify what was wrong with you.

[Christy_D]

My son was diagnosed with POTS in June 2009 and just continued to get worse and worse and time went by. He was unable to attend high school, lost friends, etc... I kept looking for more answers, his main symptom being debilitating nausea. Finally, in May 2012 he was diagnosed with MCAS. The doctor believed my son's POTS was a symptom of the MCAS. Finally, in June of this year, 4 years after the POTS diagnosis, he was prescribed a medication that has given him much relief. While he still has daily nausea, it is at a functional level and he isn't spending most of his time in bed.

So in our case, continuing to search for answers paid off. While MCAS will probably be a life long issue, at least we have the full picture.

Christy

[badhbt]

I feel your pain. I am a Nurse and I even found it frustrating to go from one type of Doctor to the next. I too was questioned, why are you here? UGHH

One thing that I have found helpful is a ND Doctor. One that uses conventional medication and Naturopathy. I felt like they look at the whole picture and are open to suggestions regarding lab work, trying to find your cause etc.

You are not alone!

[Chaos]

Gemma- I suspect most of us can relate to the experience of going to a doctor and having our questions and honest inquiries being dismissed....usually because THEY don't know what to do to help us, not because we are wrong to ask.

I had a similar experience when I saw in "infectious disease specialist" when I was first sick in 2009. He totally blew me off and made me feel like a total loser. This was even a doc I had worked side by side in the hospital with, whom "everyone" thought was so great. Major drag! Imagine how happy and smirky (probably not a word but it fits!) I was when I did my own research, found an immunologist (in 2013) who DID know what to do and when he went thru my history his comment was "Shame on that infectious disease doc for not checking this out earlier. This should have been a MAJOR red flag for him to look at!"

Whether it's helpful or not to find your underlying cause probably depends upon you and how affected you are by your POTS. If you are basically functioning and able to do most of your life with some modifications or meds to help, maybe it's not worth it. If, like me, you have lost most of your previous life due to the illness and you've gone thru several docs and all they have to offer and still aren't where you want to be, then I feel I have no option but to keep on looking in hopes that something else will show up that might be treatable or offer more insight into the situation. Doesn't mean I don't live life or enjoy life in other regards as well. But when I have days where I have no option but to be in bed, I might as well spend my time looking for answers rather than watching TV or staring at the ceiling. Satisfies my need to "be doing something productive" even if I can't be running around doing it like I used to be.

[looneymom]

Hi Gemma,

For my son, I want to find his underlying cause. Our cardiologist also believes that something else is causing the POTS. If our insurance will approve it, we will be going out of state to see a board certified pediatric immunologist. My son had some immune testing done earlier that indicated some problems. However, the doctor could not run anymore test because she was an adult immunologist. She was limited to what testing she could run for us. So after we found this out, our cardiologist has referred us to someone in Texas.

If I were a young adult with POTS and the POTS medications did not help, I would be looking for a cause. I just made a post about CANS/PANS/PANDAS. It is unusual and my son is being checked for it. A doctor in California is treating adult patients with PANDAS.

OU researchers are making the connection that POTS could be autoimmune related. If there seems to be a symptom that bothers you more than normal, I would see a specialist in that area. They may not know what POTS is, but maybe your symptom is an indication of something else that's causing the POTS.

Rachel

[Jon6945]

What exactly causes POTS and Dysautonomia is a great question and I believe knowing the pathology behind the condition is necessary if you really want to get well. Thats not to say you can not get help by managing symptoms but it makes a big difference if you can identify the pathogenesis. Most doctors will not entertain this though because they simply do not know what causes it and they don't want to admit they don't know (typical MD arraogance and ignorance), so they will pretend their exists no source to it, which is entirely untrue. There is absolutely no doubt something triggers this condition.

With that said, I would think these would be possible triggers. There may be other causes, but my research and experience points to the following...

1.)A virus or infection

2.)CNS Damage or Toxicity from medications (Probably the biggest one in my opinion!)
3.)Autoimmune conditions (which would likely develop after a virus or infection)

4.)Metabolic Abnormalities (for example improper metabolism of amino acids required for synthesis and catabolism of catecholamines, seretonin, gaba, glutamate, etc.)

[Gemma]

Thanks all for reply. I feel like there is definetly something wrong going on in my body, but don't know who to see for it.

Chaos, was the immunologist able to test you for something? I wish the infection specialist would test me for some yeast or bacteria infections, or viruses. Something is wrong and i want to be tested.

[Jon6945]

Also I'd just like to add that I think people should tell doctors to shove it up if they act dismissive, arrogant, rude, etc. I've seen far too many horror stories of people getting walked all over by there doctors and it breaks my heart to see sick people getting treated like cr*p for no reason.
I believe our society has been too accepting of the attitudes many doctors take with their patients. Its completely unnecessary and obnoxious . If your going to get treated like this, I would not hesitate to tell em how you feel, and find a better doctor who cares and has respect for their patient. Its the only way to change the system. This the only profession in 2014 that still treats people like animals and feels threatened by other people's knowledge. Many of these folks act far too arrogant for a profession that really doesn't know that much at all. Additionally, many of them do not acknowledge the limitations of their tools and don't admit when they don't know the answer. Instead they are dismissive and disrespectful. That kind of attitude is dangerous because it can prolong unnecessary suffering. I don't believe there are many other professions that collectively takes on this type of attitude with their clients. I am not sure why the people in this field feel entitled to act like this. There are many other professions out there they go through many years of school and studying and do not act like this.
I am not suggesting all doctors are bad people, I'm just saying the kind of behavoir many of them demonstrate is very childish and there are so many stories of people getting treated horribly, especially from Neurologists. This is ironic for a field that means so much to society and our lives . Its just one story after the other and its disturbing. Tell these people to **** Off if thats how they are gonna treat you. They don't know enough to be acting like this and even if they did actually know a lot more, they still shouldn't act like this. Sorry for my vent but I feel like this may be the best advice I've ever really offered on any forum!!

[Chaos]

Yes, when I finally found one who knew what he was doing, he ran quite a lot of tests for various viral titers/ bacteria etc. He also looked at my immune profile, natural killer cell function etc.

IgM titer levels are usually what your average doc will look at to see if you have an active infection going on. However, if you are running high IgG titer levels, it usually indicates a past infection but may also indicate that your body hasn't been able to fight it off appropriately or that there may be a "partial reactivation" of the virus. According to my immunologist, most people will have a spike in IgG after their initial exposure but then over time it will fall off and sit at a low level. However, he says, they are finding that some people run very high levels of IgG for various viruses and they feel this may indicate that the immune system isn't suppressing them as it should.

Currently there is a lot of debate about this whole topic in the field. My doc says titer levels aren't a great way to monitor viral activity but they are one of the few ways they have to do it. However, they have found a lot of the viruses live in nerve tissue and they suspect it crosses the blood/brain barrier and is in the brain. They also suspect it may hide in the bone marrow rather than in the serum so that may be why they don't find the virus actively on a lot of blood tests.

If you check out the Stanford University CFS website, they have a very active research interest in the viral aspects of the disease. There are a lot of links from there that you might find helpful. A.Martin Lerner MD is another doc who has done a lot of research on viral causes/links to CFS and has some papers that you can print to take to a willing/helpful physician. In them he notes at what titer levels he feels treatment should begin with antivirals and which meds are the most helpful for which viruses. He's been doing it a long time and treated himself first when he was sick, so has a good knowledge base.

Since there isn't a lot of immune research going on related to POTS at the moment that I'm seeing (other than PANDAS), I've been watching the ME/CFS research since there is so much overlap between POTS and ME/CFS and there's a lot of immune research going on there.

[Jon6945]

I agree, Viruses are huge cause of all this, but we have not yet developed very good diagnostic tools for identifying them. And the few antivirals we do have (valcyte, valtrex and a couple others) carry hefty side effects. I'm hopeful they will have more in the future and some better diagnositc tooling out there for them. There are thousands of viruses and post-viral conditions and just a handful can really be screened for. I believe this to be a major causative factor of many of these so called "autoimmune diseases". They are really just chronic viruses causing immune system dysfunction. They may not really even be active (IGG as you say) but they can still cause immune system dysfunction because they are still in your body. Lerner has done some real good research in this area.

I'd be very interested in hearing anyones experience with anti-virals on this forum and how it affected their dysautonomia. Valcyte anyone?

[imapumpkin]

my integrative medicine doctor did a bunch of blood tests and they can tell i have antibodies of certain viruses in my system (like pneomonia which I had at age 7). The problem it's it's hard to tell which of the viruses is what actually caused the POTS. You can also see a geneticist to see if the underlying cause is mitochondrial or metabolic.

[dkd]

I have seen 10 different doctors this year and my EP cardiologist is the only one that has offered any help, but he just put me on a beta blocker and dismissed me for a year.

I'm fed up with doctors to say the least.

I keep wondering if there's a cause? Is there something else going on that they haven't found yet? Is there anything else I should be doing?

I'm reading a book right now about a guy that took 15 months to finally get a diagnosis of ALS. Once he found out, yeah he had a diagnosis, but it's a death sentence. So, makes me wonder if knowing would make any difference???? I don't know.

I told the last doctor when the only thing she offered was Cymbalta, that I'm either going to get better or I'm going to get worse. I guess I'll just wait and see what happens.

[Gemma]

I know what you mean. When i go online and search my symptoms it scares me a lot. My symptoms fit into really scary diseases, like MS, ALS, etc. Maybe its best not to know.

[Gemma]

Neurologist that I saw said I dont have MS due to 2 brain and neck mri that was done. Also, said definetly no ALS. But i know these conditions are very hard to diagnose. I guess we have to hope for the best and hopefully we will be lucky like some of those people that were able to get better and recover.