Pots

[Poohbear]

Wanted to see what thoughts or input the rest of you have on this topic.

I was first diagnosed with NCS many many years ago. In time I got worse (different symptoms) and they then added POTS to the mix. They've also been able to determine (although it's taken years to actually catch enough data on EKG's and monitors) that I do have true intrinsic IST as well.

For many of these years I've dealt with cardiologists. Both Vandy and Dr. Grubb come from cardiology backgrounds

.

In time as I've learned more and seen how dysfunctional my entire body is I wonder......are these guys still missing something? It's not my intention to put them down and I don't want to sound that way. I've been helped in so many ways by these guys.

POTS= Postural orthostatic tachycardia syndrome. Even the name implies more of a cardiac problem. In fact my local cardiologist says the disorder is a cardiovascular one. I think since it involves the autonomic nervous system that it is equally a neurological problem yet the neurologist say "no" to that (although I don't understand why).

I understand the cardiac components of this disorder may appear, or even may be to some, the most debilitating and dangerous symptoms.

Personally, I wonder if at least for some of us, if we aren't misdiagnosed again. I definately have the symptoms of POTS and NCS however, I also have symptoms of a much bigger and broader problem that are not helped by any of the meds used to treat POTS.

I have debilitating symptoms that effect almost every major body function I have. To me, that adds up to something that is really much more complex than only POTS as they've defined it to date.

What do you all think?

[Dizzy Dame]

Pooh,

I agree that some of the experts may still not understand the full picture. For instance, when I was at Vandy, I told them I had orthostatic hypotension AND orthostatic tachycardia. They told me that was impossible! I could only have one or the other...even though I have many medical records showing my bp dropping and my hr increasing upon standing.

I also have major involvment in my other systems, for instance, the GI problems, and the difficulty swallowing and breathing are equally disabling. In fact, it's the dizziness that's my worst symptom, the tachycardia doesn't really bother me that much (other than it's annoying and uncomfortable to have my heart thunking up against my chest wall).

I think the experts are on the right path, but I do believe there's still alot left to uncover with this illness.

This is a great post! Thanks for starting it.

Hugs,

Lauren

[futurehope]

I do not think my neurologist would agree with your neurologist. POTS is an ANS disorder. As far as I'm concerned, my autonomic nervous system does not function properly. I believe the ANS affects many different areas of the body including heartrate.

Now, as to WHY this is happening at all, whether it is autoimmune, or viral, or a response to immunizations I had as a child....wish I knew?

I've been told by several doctors that they do not understand this ANS dysfunction - no kidding?!

I've always found it strange that the symptoms can come and go, and beyond that, they can change. How's that for trying to figure this all out????

And trying to use medication to correct something that changes seems an impossible task. Unless, of course, they figure out EXACTLY what the ANS needs and that cures everything. I'm hoping for that.

[kmpower]

The Functional Medicine approach would say that the name of the problem is only that and the treatment must be based upon the individual presentation. It applies to everything, not just POTS.

Each person brings to the onset of problems:

antecedents ---- the genetic, family and personal history background

triggers ----- what makes it better and worse, how did it start

mediators ----- the physiologic components like inflammation, immune problems, hormone problems

When you look at a health problem like this, every person who is not well might have things that are being missed. Some of us have untreated allergies. Others have hormonal problems. Some of us are deficient or toxic, etc. Some have structural problems and need adjustments. We all appreciate how much in common we have with each other here -- including an emotional response to the symptoms and the lifestyle limitations -- but also that we have a unique experience and set of not-emotional symptoms.

The researchers and doctors might be doing their best, but who has all the answers with everything?

Great question. Don't give up. That is my 2 cents.

OLL

[Poohbear]

Futurehope,

My neurologist does agree that POTS is an ANS disorder. He just says this type of thing doesn't fall into treatment by a neurologist.

I do agree that most neurologist (and for that matter Dr's in general) are NOT trained to deal with disorders of the ANS. However, I still get frustrated that when it comes to folks like us there is no "one" Dr who truly understands and treats the condition. Instead, they all want to treat the symptoms which doesn't really ever get to the root of the problem.

[yogini]

Hi Pooh,

I've seen a few neurologists and the only ones that seemed to know about POTS are ones that specialize in the autonmic nervous system, like Dr. Low at Mayo.

I think part of our problem is that POTS affects more than one system of the body, and each doctor only knows about his or her speciality. There are very few docs that want to take responsibility for complicated cases like ours, and everyone tries to say that it falls within someone else's speciality. Someday they will come up with an integrated approach to dealing with all of our problems.

I also think that if you have been diagnosed with POTS, it might be easy to miss a second condition that you have, because so many symptoms can fall under the umbrella of POTS. If your case doesn't seem typical or your symptoms seem more severe than most, I think it makes sense to keep looking for answers. I don't think you're wrong to question your doctors -- I think this is the smart thing to do. The diagnoses they give us are limited to what they know, and they are not so good at figuring out things that fall outside of the box.

-Rita

[Lukkychrm42]

Futurehope,

My neurologist does agree that POTS is an ANS disorder. He just says this type of thing doesn't fall into treatment by a neurologist.

I think that makes sense, since there's not a cure for POTS. If they come up with some sort of ANS stimulation to 'fix' the ANS or something, then it could be treated by neurologists, but since right now all they can do is to treat the symptoms, then treating the most *obvious* parts of it, in most of our cases, the cardiac problems, makes the most sense, as long as we also get evaluated for hormonal, GI, rheumatological, autoimmune, etc issues as they come up as well.

I guess that's one of the most difficult things about such an all-encompassing disorder.

[shannon]

To me, it makes sense for a neurologist to treat POTS. I've always thought that if I were to go to a cardiologist and then to a GI specialist, both would just treat each symptom seperately. But I think that a neurologist is more likely to look at the body as a whole....which is very important when it comes to POTS.

Don't get me wrong...I've had my problems with neurologists too, but some can be very helpful.

Great topic!!

Shannon

[Ernie]

Hi,

All my doctors have told me that they don't know much about POTS and dysautonomia and it is mostly a "to be discovered" disorder. I wish I had instant knowledge and could just tell them what's the answer.

[dizzygirl]

POOH!!!!!!!!! i totally agrre with what you are saying.. while I mean no disrespect to the experts in the field.. they keep tellling me that they are missing something cruicial in my case.. but do not know what that something is..

it is frustrating to say the least..for myself as well as the docs..

POTS does effect virtually every organ system in my body.. yet treatments are hard to come by.. and a good doc is ever harder to find..

I have MRI's and EEG's that come back abnormal everytime.. yet they dont know what to mkae of them.. there for it gets left on the abck burner or completely forgotten about..

I too suffer from a severe and very debilitating form of what ever this is that is goin on.. I also am told that i'm not a "typical" pots patient.. that i expereince symptoms that are generally NOT seen as a whole in patients...

and I am left to pick up the pieces so to speak.. and try and find the answers on my own.. like I dx'd myslef with pots even before the docs caught on to it.. thanks to this website.. and reading janets story.. I cried when i read it..

But anywasy pooh i atleast wanted you to know that i understand what you are saying... and wish that i had more to offer

SO here are some HUGS

[momofpreciousboy]

I struggle with this too. I worry that they are missing something, but what can you do? You feel so nuts for going to so many drs, plus they don't know anything (for the most part). Then, the cardio will say that is not in my field, neuro same thing and it is like you have to find someone in every field that knows POTS. I have gotten better, I am pregnant again 10 weeks, and that has helped. I still take some propranolol but not as much. I think the most helpful thing to me would be to study the ANS and its controls instead of just POTS research. Really it controls so much and really, if it is messed up, it can throw a lot off. I just have not had time to do that. I really want to go to Grubbs. I will do that before I go to any other new drs, because I think I can find the most answers there. I find some comfort in that I have an aunt that is 70 with this. I do not think a lot of medicines work well for POTS. Except for me beta blockers have been a blessing. I hope you find what you are looking for. Jennifer TX

[Poohbear]

Hi Everyone! Thanks for all the responses.

My point here (although I may not have done a good job of expressing it) is that I do believe I have POTS but the more things that go wrong with my body that are controlled by the ANS system the more I feel like most of these Dr's are too narrowly focused. I think my POTS and other problems are being caused by a larger, more complexing problem of the ANS and that POTS is a symptom of whatever that other thing is.

Like Jennifer said studying and researching the ANS and its controls instead of just POTS seems like a better answer for at least some of us.

[kmpower]

I know what you mean, Poohbear.

The reason I answered the way I did earlier about the functional medicine approach was that I had heard an interview about a study on autoimmune diseases just completed. The author of the study used a functional (holistic) medical approach. The patients had varied problems. He was asked to select a story and tell it.

He told the story of a lady with erythromelalgia (I looked up the spelling). It is a terrible condition of the blood vessels in that the hands and feet usually suddenly turn red and get excruciatingly painful. Then they get cool. She was on about 30 drugs and still in agony. She hadn't worn shoes for 5 years or walked for about 3 years. The local newspaper had just published someone else's story about this rare problem and said it was totally incurable and the pain would get worse, and that is why the author accepted her into this study.

What happened? He did the usual testing they do with autoimmune cases -- test for inflammation, gut function, food allergies, detoxification capacity, hormonal balance and other functional tests for nutrition and toxicity. They started her on an antiinflammatory diet and a vitamin or two. She came back with celiac disease that she didn't know she had and was taken off gluten. She needed vit D and some other things. The tests and the therapies were not strange or expensive. They treated her as a whole person with a named problem, not the named problem alone.

In 2 weeks she was 50% better. In 8 weeks, she was 100% better and down to 3 pills a day. In 12 weeks, she was off all the drugs. It took much longer for all the lab work to get better so she didn't stop her program. But she is wearing shoes, walking, living a life again.

This is true. And if it can happen to someone like her, never, never, never, never give up hope that it can happen to you, too.

OLL

[MNsue]

Rita,

I am working on going to Mayo after not having much luck with the U of M Neuro department. Did you feel like Dr. Low was helpful?

Rhonda

[MNsue]

My husband and I just had this coversation with the Cardio, that did my 2nd tilt table test on Monday. We were both hoping that we could get an answer that explained my autoimmune, neurological, and autonomic issues. all these symptoms came at once, so I feel that they must be connected. I am convinced that my issues are autoimmune.

I have been begging doctors to try immune therapy to see if I improve since I have had complete remission following a higher dose of prednesone (given for Asthma and Sinus infections). I hope to meet a Doctor that is willing to prove me wrong or right and give it a try.

I pray that one of the researchers working hard on this disease will find a bigger connection.

Rhonda

[ellen]

I have been begging doctors to try immune therapy to see if I improve since I have had complete remission following a higher dose of prednesone (given for Asthma and Sinus infections). I hope to meet a Doctor that is willing to prove me wrong or right and give it a try.

Rhonda

Rhonda, that's so interesting- I also felt GREAT when I had to take prednisone for allergies-like you, I had allergies, asthma, then low thyroid all following the onset of POTS in 1992. I hope you find a doctor who will work with you. -ellen

[MNsue]

Ellen,

Do you also have tremors and muscle weakness? It seems a lot of POTS patients have other autoimmune issues as well. I do think there is a connection. Did you also have hashimoto's with high antibody levels?

I am always told that I have site specifice autoimmune disease, and they do not treat the autoimmune disease only what the disease destroys. I don't know about you, but I really don't have any spare parts anymore.

Thank you for your response,

Rhonda

[ellen]

Rhonda, yes, I have had tremors my whole life, and muscle weakness, occasionally. But now that I think about it, I had tremors last summer when I asked my PCP if I had POTS. He told me the tremors were from being "over medicated" because my TSH was slightly low, and we lowered my thyroid dose. Bad idea. Now I'm back to full strength thyroid and I take it under the tongue until it dissolves (yuck), and my shakes have gone away for the first time in my life!!!. He also sent me to the cardiac EP who diagnosed my POTS.

Rhonda- I don't know if I have Hashimoto's but I have been treated for "low thyroid" since about 1996. My doctors have been so casual about it . And my insurance has changed several times, doctors retired, or got ill and I haven't kept an exact record. I always thought of myself as healthy, so I don't pay much attention ("ignore it and it will go away"), but I'm realizing now, I have alot of other symptoms.

[Poohbear]

I have Hashimoto's too and it really messes with my POTS.

I am fortunate enough to have a really good Dr that looks at my lab numbers as well as my symptoms and tries to adjust my med according to all of that.

If you want to know more about your thyroid status you can ask the Dr to run the antibody test next time you have blood work. My antibodies always come back too high to count. The lab value around here says the antibody test should be lower than 35 and mine always read greater the 3,000!!

[Guest Julia59]

Poohbear, My numbers for the hashemoto antibody test is in the thousands too---the endocrinologist doesn't seem concerned though. I think having this with my POTS is a bad mix. Furthermore---all my other issues with my spine, EDS ect.-----I don't know what is causing what anymore, or which doc to see.

My new PCP seems interested in learning---she was very cool about this---(cool--in a good way--- ).

She actually requested information.

I often wonder about POTS just being part of another problem that the medical community could be missing. Of course there is always the crappy environment we live in----a nice little monkey wrench thrown in the mix.

I know you and all the rest of us on here appreciate all the efforts of Dr. Grubb, and any other physician who takes time out of their lives to try to understand this. It is a momentous task, and i'm sure some of these docs feel like they're trying to put a bandaid on a big gaping jugular vein wound-----the blood just keeps coming, and the bandaid isn't enough.

Your particular case seems like there is more going on. I think neurologists need to be more involved, as I think it all stems from neuro/endocrine issues----but the actual cause is another story, as many things can affect or damage our ANS/Brain.

It's so complex-----there could be so many causes----genetics, environment, virus, structural problems with the lower skull, and upper spine affecting the brain stem---which will cause dysautonomia, diabetes, parkinsons----EDS----ect.------------->Obviously this complicates things even more.

Julie :0)

[MNsue]

I think it is interesting that so many of us have high thyroid antibody levels. My levels continue to go up. They went up to 900 from 500 when I was originally diagnosed and treated 5 years ago. I wonder if the higher the antibody levels, the worse the POTS is? It would be a good research question.

It so nice to have this site to discuss these issues.

Rhonda

[momdi]

WW2,

Like Poohbear, I agree that this condition is in the realm of neurology, as the cardio dysfunction is only one of many many body functions controlled (or miscontrolled) by the ANS.

While I agree that most neurologists aren't capable of treating this properly, I strongly feel that the best docs to try to understand the condition are neurologists who choose to specialize in the ANS. For all of Dr. Grubb's contributions, and they are truly monumental, imo, the next breakthroughs will be by neurologists who will be wise enough to build on the work of Dr. Grubb and others.

My son saw Dr. Low at Mayo and I think it was very helpful. Helpful suggestions and medication, but no magic answers. He certainly gave us a greater understanding of what's going on. You can search this site for a more detailed earlier post I made.

I remember reading somewhere that perhaps he doesn't take patients with CFS, so you might not want to mention that until you show up at Mayo (did I say that???) I think this is odd b/c he diagnosed my son with POTS and CFS - I'm a nurse and I don't see where he meets any of the CFS diagnostic criteria. I've also heard that Low turns down 80% who try to get an appt. Don't know how much of this is true or internet hearsay.

I think since Low's own son has this condition (this I do know, as he told us directly), he's probably more driven than most docs for a deeper understanding. They're also running a research study right now - to test DNA and follow the progression of the condition - so that might be offered to you as well, if you fit their study criteria.

[MNsue]

Thank you Diane for the update and the FYI on the CFS and Dr. Low at Mayo. It is good to know that there are doctors working hard on this issue. When I was diagnosed with CFS 16 years ago, there was no treatment and very little research. I believe they missed the POTS and was labled CFS because they did not know what else to do with me.

Rhonda

[momofpreciousboy]

I just wanted to say my cardio stresses that POTS is a collection of symptoms--hence the word "syndrome". It is NOT a diagnosis. So I do not think POTS is what is wrong with us, it is a collection of symptoms. There is something else. JenniferTX

[Gena]

Momofpreciousboy....my cardio at Mayo said the exact same thing. He said that POTS could be caused by 40 different disorders. The underlying cause of POTS may be different from one person to the next. That is what makes it difficult for researchers.