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New paper by Dr. Grubb


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Hi guys,

There is a new paper on POTS published by Dr. Grubb that is really good. It explains the different varieties of POTS and the best treatments for each variety. Best of all, you can access it for free if you just sign up for a medscape account and do a search for postural tachycardia syndrome.

From Journal of Cardiovascular Electrophysiologyspacer.gif

The Postural Tachycardia Syndrome A Concise Guide to Diagnosis and Management

Posted 02/07/2006spacer.gif

Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D.

Take care,

Michelle

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Great article Michelle! Stuff I already knew but glad to see it written in DOCUMENTATION by an astute physician. Thanks

Corina,

Did you try enlarging the text before printing out? Depending upon if you are doing it from the website or someplace else on your computer, can affect the text. I haven't tried printint out yet but will do so later.

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thanks for letting me know sophia, as i'm not very good with computerstuff i printed the normal version but my husband will enlarge a copy. in fact i couldn't even find the "to print " version but my better half (as we call our partners here) helped me out (what would i do without him :) )

i'll give the small letter print to my pcp :lol: so it keeps him busy for a while!!!

corina :)

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Thanks, Michelle, for posting this.

I found the article easy to understand but I am very confused by the chart and the classification. According to the chart I have secondary POTS -- secondary to Hypermobility Joint Syndrome and possibly also secondary to an autoimmune cause -- Sjorn's).

I also have two kinds of Primary POTS-- partial dysautonomic (because I had onset following a virus and a major life stress) and the hyperadgrenatic form.

So I have at least 4 different forms all at once!

I will have to print that article and underline all the different kinds I have and take it to Dr. Grubb this summer and ask for clarification!

So how many others on here see themselves with more than one type according to the chart?

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Glad you guys enjoyed the article. It's a good one. :)

I'm not sure why some of you are getting "mini print." The article printed okay for me. Maybe you could copy and paste it into Word (or whatever word processing program you have) and change the font size?

Jan, I would take the paper into Grubb and run your thoughts by him. I *think* if you have JHS then you'd be classified as secondary. Just because you have elevated norepi levels does not mean you have the hyperadrenergic type of POTS. The hyperadrenergic type is thought to occur due to dysfunction of the re uptake transporter protein that clears norepinephrine from the intrasynaptic cleft, and it is one of the lesser common types of POTS. It is my understanding that what's going on in people who are classified as hyperadrenergic is currently thought to be a very different situation than what is going on with the JHS type. Both may have excessive norepi levels, but it is what is causing the excessive levels that differentiates the two.

Please do report back and let us know what Dr. Grubb has to say about all this, though.

Michelle

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This has been helpful, I confess I still find it all confusing. My doctor is very short on info.

I was amazed to read that Dr Grubb recommends 20 mins aerobic exercise , 3x/week. Is anyone able to do this? I would love to, but find I have a bad reaction every time I exercise, even a little.

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wow! very good article.. I like how Dr. grubb mentions that a "physicainas attitude is cruical".. I thought of several docs that need to heed to that statement!

But thanks Michelle for posting about this...

Linda :)

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i definitely think this is a good "sum up" article. not necessarily new info for those who read the research &/or have spoken with docs recently but a great concise article that is certainly helpful to have.

jan, just to add to what michelle mentioned, dr. grubb has also acknowledged to me that the categories - while useful and important to a degree - are not all inclusive or foolproof. that goes for both POTS itself as well as for some of the different categories of dysautonomia more generally. definitely ask him though; as you know he doesn't mind questions:-)

suzanne, re: exercise, yes there are SOME that can do that much. there are some who can't do anything at all. there are some who can do more. it varies greatly and dr.grubb's prescribed amount is a goal to work toward. he's the first one to say that anything is better than nothing so don't let the amount turn you off. at different times since my diagnosis (about 9 yrs ago) i've been at every point of the continuum....able to do more, less, and just about that. just do your best & perhaps experiment with different things. there are some good past discussions on possibilities so you may want to do a search if you haven't seen them already.

:) melissa

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Thanks for the info, I printed it out and faxed it to my doctor. When I talked to him tonight about my treatment, he said he was going to read it later this week, and see if there is anything that stands out to him!

I am hoping this will at least help with the understanding, the the different kinds of POTS.

Thanks again!

Amy

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I emailed my doc the article tonight but for some reason had to use my yahoo addy as opposed to another one.

My doc emailed me back wanting to know how I got my yahoo nikname... LOL.

Least he got the article...he emailed me at 8:45..must be his evening in the office. Thanks again for the great Link, Michelle.

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that is what frustrates me so much: my pcp is very willing to learn, but he has hardly time to read. while specialists have turned me down and sent me home ("i don't need to see you anymore because there's nothing left i can do for you") the only doc who is willing to help has so little time :P

sorry, just needed to say this,

corina :)

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Okay, I know this is stupid. It's a generalized article. But I have no way of knowing what type I have. We (pcp and I) assume it is hyper, because I have the classic symptoms, but he hasn't done the blood work. But I have every symptom, hypertension, flushing, cold clammy hands, blah blah blah.

Anyway I'm looking at the med list and thinking those are whopping doses! :) So I am assuming those are the goal doses and not the starting doses, correct? Is that how others are interpreting this? Also, is he saying lexapro or amytryptillin (sp)? There's like one letter difference, but the way it's spelled doesn't jive with elavil (Ican spell the brand name), but lexapro. I am willing to try these drugs, as this atenolol is not agreeing with me at all, I'm more syncopal, because it's dropping my pulse into the 50's. Gack....However, elavil is notorious for increasing heart rate.

So I know this is silly and maybe I was just in a total fog when reading it, but I don't want to send these recommendations to my pcp till I'm a little clearer, as he'll jump on them like stink on a skunk... :P Thanks for looking past the fogorama, but many of you have seen him, and know how he does this....dunderheadmorgan

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Note to Michelle,

I just reread the letter sent by Dr. Grubb and Beverly to my PCP after my last visit to Dr. Grubb. It says,

"suffers from the beta hypersensitivity form of postural orthostateic tachycardia syndrome. She also has a history of joint hypermobility syndrome, anxiety disorder, multiple allergies, and mild intermitent asthma."

Again, I will ask about this on my next appointment. However do you know if beta hypersensitivity is the same as hyperadgrenatic? I guess I was assuming it was, but this is not what it says.

Any thoughts?

To Morgan,

I go to Dr. Grubb. I have taken meds prescribed by him. He has always started me at a low dose and had me work up to the higher doses. On my own, I start with even smaller doses. This works best for me. I started Mestinon at 1/4 tab a day. Dr. Grubb's starting dose for me for mestinon was 1/2 pill 2 times a day. I worked up to his starting dose, even though his starting dose was low. Hope this helps.

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Note to Michelle,

I just reread the letter sent by Dr. Grubb and Beverly to my PCP after my last visit to Dr. Grubb. It says,

"suffers from the beta hypersensitivity form of postural orthostateic tachycardia syndrome. She also has a history of joint hypermobility syndrome, anxiety disorder, multiple allergies, and mild intermitent asthma."

Again, I will ask about this on my next appointment. However do you know if beta hypersensitivity is the same as hyperadgrenatic? I guess I was assuming it was, but this is not what it says.

Any thoughts?

According to what I found, the beta adrenoreceptor hypersensitivity causes POTS in allowing blood pooling through veins with decreased response to vasoconstriction. Whether yours would be secondary from the JHS or the Partial Dysautonomic form, I wouldn't be able to say.

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Hi Jan,

I think a lot of our members assume they have the hyperadrenergic form of POTS when perhaps they do not. The paper by Grubb states the following in regard to the hyperadrenergic form of POTS: "The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as an exaggerated response to isoproterenol infusions."

Do you have hypertention?

I think Dr. Grubb is trying to make for clearer typing of POTS, but there is obviously a lot of overlap in symptoms. Please do ask him what type he thinks you have when you see him.

Take care,

Michelle

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That's what happens to me. It confuses all the doctors and when I had my tilt, she was all weirded out by it. When I am up and around or even worse, just standing, I will flush horribly, my feet and hands get feezing cold and clammy, and my bp will go from 110/70 to 220/130 in about 5 minutes. Then I get a horrible migraine type headache, which I assume is from the massive increase in bp.

I talked to my pcp about it and we realized that every time I paralyze or have syncope, when my bp and pulse are recorded they are both sky high. But my bp shoots way up before my pulse does. If I feel my pulse going up, I'm going down.

Does anyone know if he is talking about lexapro or elavil as treatment? morgan

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morgan -

what made you think that he might be talking about elavil? i could have missed it but didn't see that (aka Amitriptyline, which i can only spell by cuttin & pasting it from elsewhere).

i'm pretty sure he's referring to lexapro though it does say "escitaloprim" rather than the correct "escitalopram". there is no such thing as the former so....i even checked the journal itself (rather than the medscape version; i have access via the university) but it's spelled wrong there as well. dr. grubb has said to me in the past that lexapro works well for many (as far as that vs. other SSRIs) so it makes sense to me that it would be the med listed as an example.

hope this helps a bit...

B) melissa

p.s. when looking in the journal i came across 2 other interesting articles....a commentary by dr. g entitled "Once a Fainter, Always a Fainter?" and "Age of First Faint in Patients with Vasovagal Syncope" by Sheldon et al in Canada. i'll have to see if they're available via free access anywhere though.....

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sweet Melissa....when I looked it up with that spelling, it kept talking about amitryptylline ( you know the word,) which is elavil. That's what kept confusing me.

If you google it misspelled, you will get a bunch of elavil info, and I have never seen that name attached to elavil. So it seemed to me that it was misspelled, and my foggy little brain just wasn't sure.

I couldn't imagine giving us a tca as they are so notorious for tachycardia. Any, I am mumbling I think. And wandering, it's been a baaaad day.

So google the misspelled one and see if it says "did you mean" and when you click on it, all that's there are tca's. I am not making any sense. B) morgan oh thanks for the input....

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