Pots Review For Doctors - Newer Than Grubb 2006?

[DeGenesis]

Edit: Grubb 2008, I should say.

Hello there, I am very pleased to be here.

I have an appointment today and I was wondering what literature you give to your doctors? This doctor, like many others I meet, is ammenable particularly to journal articles. This is a good sign in a doctor since they are open to widening their scope of knowledge. If your doctor is not interested in medical journals, that is a warning sign that they will stagnate a few years post medical school.

I have been using the Grubb review from 2008, but it is becoming dated. Is there anything newer people have been using. I have continued to use it because it is published in Circulation, which has some pedigree.

Thank you

[DeGenesis]

Hopefully also this paper should emphasize the possibility of orthostatic hypertension. When doctors test me and my blood pressure rises, this is usually the time when they give up mentally trying to figure it out.

[looneymom]

Hi and welcome to the forum. My son has POTS and I have found a very open minded cardiologist that will look at all the POTS literature.He has even met with Dr. Grubbs at various conferences. Many doctors do not understand POTS, so it is best to find a doctor that will even look for an underlying cause. Hope your appointment goes well and that you find answers to your medical condition.

[DeGenesis]

Thank you for your warm welcome.

I have just found a review by S Carew 2009 in Europace. It seems very good.

[Chaos]

http://www.deepdyve.com/lp/elsevier/postural-tachycardia-syndrome-in-children-and-adolescents-2u5KusIvIN

Here is a review article from 2013 that also mentions hyperadrenergic response of increased blood pressure upon standing. I think Dr. Raj from Vanderbilt has some more current review articles too but I can't put my finger on them right at the moment.

[Psalm 23]

Hi and welcome to the forum. I believe this is one of the newer articles written. I will post any others I find. Different doctors have a somewhat different take on things.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

I hope you find the answers and treatment you need.

Janet

[Psalm 23]

The most recent Mayo Proceedings.

http://www.mayoclinicproceedings.org/article/S0025-6196%2812%2900896-8/fulltext

[DeGenesis]

The Mayo Proceedings article is fantastic. Thank you and thanks to all of you who posted links.

[DeGenesis]

Hi and welcome to the forum. I believe this is one of the newer articles written. I will post any others I find. Different doctors have a somewhat different take on things.

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

I hope you find the answers and treatment you need.

Janet

Hi Janet,

I have seen this Levine article as well. I have often wanted to use it due to its succinctous, but the Levine angle plays too prominent a role in it.

I do strongly believe that deconditiong and exercise are critical factors in the pathogenesis and treatment of POTS, respectively, but they are not the whole story, as I'm sure most here will agree.

I know that if I gave that article to some doctors they will immediately zone in on the "Exercise" section, and ignore the rest of the article.

[Psalm 23]

DeGenesis, you're right on the Levine exercise over emphasis and risk of physician misinterpretation I probably should have posted a link for the most recent of just Dr. Raj's articles or another one without the exercise bias. I am a believer in gradually incorporating appropriate exercise into a POTS treatment regime but it may not work for everyone and it is certainly not a cure. It's what was recommended to me by my Mayo Neuro as was medication etc. All of which have proven to be very helpful. I do understand the frustration of trying to make physicians understand the POTS picture and all of it's complexities. You're fortunate to have physicians that are open to learning about this devastating disorder. I was not so fortunate and did not receive appropriate care and treatment until I went to Mayo.

If I stumble upon any other articles I think might be helpful I will post them.

Janet

[SarahA33]

This is a Grubb Article from 2012.

Not my favorite but some useful information is provided.

http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

[DeGenesis]

This is a Grubb Article from 2012.

Not my favorite (am I allowed to say that?) but some useful information is provided.

http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

The problem is that all the really good review articles are long. I once brought two articles to my PCP, since he wasn't doing any research and asserted that, "I don't think any doctor has ever seen this". Anyways he told me to give him the shorter one.

[SarahA33]

Are you kidding me? So sorry.

Usually, neurologist's handle POTS cases, but clearly Grubb is an Electrophysiologist, I know of cardiologists who handle it as well. My doctors who diagnosed me are hypertension specialists, but specialize in complex cases like mine. I saw almsot 30 doctors before I was correctly diagnosed.

Have you seen a neurologist or found more recent neuro articles like Janet posted useful?

Has your primary thought of giving you a referal to a specialist that can better help? Would you mind sharing which state you are located in..lots of others can probably jump in to help you, I'm sure. Also, Dinet has a list of physicians specializing in dysautonomia by state on their homepage.. you may find that helpful.

[DeGenesis]

I live Toronto, Ontario, so my choices are severely limited. There is a cardiologist, Dr. Guzman, a couple of hours drive from my me that some people have had a good experience with.

I'm holding off for the moment. Referrals are rather "rationed" here in Canada, and I want to be totally sure before I ask for one upfront. It's not quite NHS bad yet, but we are headed in that direction.

Thank you for your interest.

Any others here from the GTA?

Edit: http://fhs.mcmaster.ca/medicine/gim/faculty_member_guzman.htm

[SarahA33]

Degenesis,

Are you able to tolorate travel at this point? If you are in Ontario, is it a possibility that you can come to the states? In Buffalo, New York, there is a POTS specialist who is one of Dinet's Medical Advisors, Dr. Svetlana Blitshteyn. I believe she does phone consults also..

http://drblitshteyn.com/

**Hope that link works also. I am not able to copy and paste anything into my posts for some reason. Can any mod's help by any chance?

[Lethargic Smiles]

I absolutely love the Mayo Clinic Proceedings article and all of the detail put into it. Thank you for sharing! I can't wait until I feel up to printing it out and reading it in more depth.

Off topic sort of: The only portion I dislike so far is the part where a suggested cause of continued symptoms despite control of tachycardia and blood pressure is "somatic hypervigiliance " and "learned behavior".

I went through Mayo's autonomic clinic and fully recommend it to anyone who asks me about it, so please do not take my thoughts as thinking Mayo is a waste of time or unhelpful. "Learned behavior" is what they told me was wrong at Mayo Clinic for symptoms they couldn't explain which I found disappointing. I have "learned" to respond to certain things with a fever and swollen lymph nodes....? I appreciate when doctors tell me they don't know rather than saying something like that.

That aspect of their theory irks me because I think many POTS patients have underlying causes that are labeled as "somatic hypervigiliance"... Yes, in some cases I am sure they are right. I just don't think their theory is the case as a general rule when it comes to non-orthostatic symptoms.

[DeGenesis]

Degenesis,

Are you able to tolorate travel at this point? If you are in Ontario, is it a possibility that you can come to the states? In Buffalo, New York, there is a POTS specialist who is one of Dinet's Medical Advisors, Dr. Svetlana Blitshteyn. I believe she does phone consults also..

http://drblitshteyn.com/

**Hope that link works also. I am not able to copy and paste anything into my posts for some reason. Can any mod's help by any chance?

Thanks, the link works, and yes I do travel to NY state sometimes. (It is cheaper to order things over the internet, have them shipped close to the border, and pick them up. I usually send my packages to a UPS store in Lewiston).

She seems very impressive.

[SarahA33]

I personally have not seen her. As I've mentioned in previous posts, my 2 treating and main physicians that diagnosed me are hypertension specialists (board certified in nephrology/cardiology) here in upstate New York.. I do however read her responses to questions in the dinet newsletters and have read articles and such that she's authored and co-authored. I'm guessing her Mayo background would prove helpful!

She's actually going to be a conference speaker at the 2014 Dysautonomia International Conference being held in Washington, D.C. July 11th-14th. I thought that was pretty interesting.

Man, I would LOVE to attend that conference. It would be awesome to be able to go...I can't travel that distance any longer. Not only from the POTS, but now mainly due to my Epilepsy. I'm too unstable right now unfortunately.

Here's the link incase you hadnt seen it yet: http://dysautonomiainternational.org/page.php?ID=137

(Again, I typed it so I hope it's accurate)

[kitt]

I absolutely love the Mayo Clinic Proceedings article and all of the detail put into it. Thank you for sharing! I can't wait until I feel up to printing it out and reading it in more depth.

Off topic sort of: The only portion I dislike so far is the part where a suggested cause of continued symptoms despite control of tachycardia and blood pressure is "somatic hypervigiliance " and "learned behavior".

I went through Mayo's autonomic clinic and fully recommend it to anyone who asks me about it, so please do not take my thoughts as thinking Mayo is a waste of time or unhelpful. "Learned behavior" is what they told me was wrong at Mayo Clinic for symptoms they couldn't explain which I found disappointing. I have "learned" to respond to certain things with a fever and swollen lymph nodes....? I appreciate when doctors tell me they don't know rather than saying something like that.

That aspect of their theory irks me because I think many POTS patients have underlying causes that are labeled as "somatic hypervigiliance"... Yes, in some cases I am sure they are right. I just don't think their theory is the case as a general rule when it comes to non-orthostatic symptoms.

Jackie, Oh about the hypervigilance! Here's by experience at Mayo discussing this topic.

This Mayo article was posted last year on Dinet by Izzy and it is the best article I've found by far on pots. There is a long thread about it on Dinet. I studied the article carefully many times before my visit to Mayo MN.

Jackie, When I was seen at Mayo MN earlier this year I asked Dr. Sandroni, (a major dysautonomia researcher there) about the use of the word 'hypervigilance' in that paper. I didn't ask about 'learned behavior' and she didn't mention it.

I too was IRKED (your words) that hypervigilance was mentioned and Dr Sandroni said, "I've never met a pots patient who wasn't a type A personality' That was her 'take' on the use of the word.

Yes, I 'was' a type A personality when I was well, but I have dealt with so many health issues & too many surgeries to list over the years and the combination of having hyperadrenergic pots and neurocardiogenic syncope along with autoimmune issues and CFS is very debilitating. As a result of all this I'm no longer a 'Type A'. I don't have the energy to be a 'Type A' and I too resent the use of the word hypervigilance. I absolutely know that I don't 'scan myself' for symptoms. In fact my style is to try and ignore them as much as possible!

Here's an interesting discussion about hypervigilance! http://physicaltherapy.rehabedge.com/tm.aspx?m=62409

Jackie, am glad I'm not the only one who was bothered by the use of this word enough to ask a Mayo dysautonomia specialist about it.

Best,

K

[kitt]

Foggy,

I am very, very grateful to Mayo Clinic in MN and also the satellite Mayo in Florida. I had several surgeries at Mayo in MN and have been there many times and have also been a patient at the Florida Mayo clinic since it opened. One of the surgeries I had at Mayo MN could not and would not have been done successfully anywhere else. I can't begin to express my gratitude.

Am also grateful for the care I received from Dr. Sandroni and the autonomic clinic at Mayo in MN and while I disagree with their view that hypervigilance is a part of pots, I respect the doctors there enormously. Mayo in MN is responsible for much of what is known about dysautonomia in the world today. Dr. Low who no longer sees patients invented/developed the thermoregulatory sweat test and that test is of tremendous value for patients with all sorts of autonomic problems...Not just pots but Parkinson's patients and many others. That test is only performed at the Mayo in MN and nowhere else in the world.

Dr. Low had a son with pots (as I understand it) and began researching pots in the 1970's, long before anyone else was.

Most of us with pots or other forms of dysautonomia are benefitting from the research done at Mayo.

Mayo is very different in that they are world renowned as a diagnostic clinic. They generally do not follow the same patients for extended periods and in most instances see new patients every single day. They specialize in diagnosing difficult illnesses. While that would never be boring, it also does not allow them to get to know the people they're seeing. That may be a slight drawback for the patient but very small in the big picture.

People come from all over the world to see doctors at Mayo in MN. You will see interpreters speaking every language imaginable there.

When you go to Mayo in MN not only does your doctor review your records but probably no less than a dozen doctors you'll never meet are reviewing them 'behind the scenes'. All doctors you see coordinate on your diagnosis and care and it's an extraordinary process.

I feel blessed beyond words to have had the good fortune to receive their care and often have received tremendous kindness from their doctors and surgeons.

Best,

K