Add And Pots

[ajw4790]

Hi all!

I was told yesterday by my PCP that she is very sure that I am ADD, interesting to be finding this out at 23 years old!

Anyways, she said that anyone she has ever seen with vasovagal/POTS types of syndromes has ALWAYS had ADD too. At least according to her.

So, I was just curious to how many people on the board have been diagnosed ADD?

Any hints, or how this has impacted your treatment?

Any thoughts etc. to why ADD may be more prevalant with POTS etc?

Thanks!

[Mrs. Burschman]

That sounds a bit goofy to me.

I've never been diagnosed with ADD. I have always had bad anxiety, but I've never had anyone suggest ADD.

I'll have to think about this one!

Amy

[doctorguest]

I am not sure where your doctor is getting these facts. At this point, research has not shown any connection between POTS and ADHD. Attention and concentration problems can occur in POTS as possible manifestations of decreased cerebral perfusion or perhaps, an underlining fatigue, but these symptoms do not constitute a diagnosis of ADHD by any criteria. I think that there are many misconceptions about POTS in the medical community, and this may be one of these. I would say that based on the current literature and the experience of top autonomic specialists, there is no evidence that ADHD is more prevalent in POTS patients than in general population.

[Maxine]

I have ADHD. My PCP said that ADD, or ADHD doesn't mix well with tachycardia, as folks with ADHD tend to get more anxious.

I think anyone gets anxious with tachycardia, but it may be more prevalent with people who have ADHD. I take Klonopin if my beta blocker doesn't work well enough to control it. I get break through tachycardia at times, and it makes me very anxious.

Now that I know more about POTS, at least I know the source. For years I didn't know where it was coming from.

It does seem a lot of people who have POTS, also have ADD or ADHD. Maybe it's just a coincidence.

Maxine :0)

[ArmyMom46]

I have POTS, and definitely don't have ADD or ADHD.

[stellakitty]

I definately don't have ADD or ADHD... I have always been a "go with the flow" kinda gal... Even when I had a knife sticking out my gut (NOT when they sent me to the pysch ward!) and last June when I was being wheeled into brain surgery. I can just sit down and get my school work done by myself with minimal self proding (I have had "senioritis for the last 2 years...), even though I haven't been able to go to school.

[yogini]

I ddon't have ADD and it doesn't come up here as a topic too often, which makes me think that there isn't much of a correlation. Does your dr have many POTS patients? It seems irresponsible for her to make such a blanket statment without any backup - this is sort of like when drs try to lump POTS with anxiety. Did she diagnose you with ADD based upon testing, or was it just her guess?

[flop]

I often have concentration problems as part of my POTS, usually when my POTS is flaring up and I also have much worse fatigue then.

For example at the moment I have an infection, feel really fatigued and am sleeping a lot, I also am having problems concentrating - can't settle to read a book / do a craft. However I feel think that this is all linked with my POTS. I certainly don't have the classic ADHD symptoms / signs and no psychologist would say I had ADHD.

With all conditions/syndromes in psychology/education it is important to remember that they are part of a spectrum and normal people often have some of the symptoms / signs - but those who truly have the condition will have many more of the features.

e.g. - Dyslexia: it is common to have difficulty spelling / mix up left & right / have poor recall / difficulty sequencing, but it is not that common to actually have dyslexia.

e.g. - Autism / Asperger's syndrome - it is common to need "planns" / feel anxious about new situations / be shy / be very methodical, but not many people truly have an autistic spectrum disorder.

What I am trying to say is that it is completely normal to have some of the features of a condition / syndrome - lots of us have "tendencies" but that is not the same as actually fitting into the diagnostic criteria. I would be very wary of accepting a diagnosis of ADHD without having a full educational psychology evaluation - they are far more trained in diagnosing these conditions that most doctors.

Flop

[ajw4790]

Hi Everybody!

Thanks for your input! It helps to know what others think!!! Keep any input you have coming, I am open to any and all feedback!

From people's responses I feel better about what I have done so far and on how things are going. So, thanks!!!

But, anyways so like a month ago my PCP started in on that she thinks that some of my symptoms/issues are ADD and not necessarily POTS etc.

Her solution at that time was give me a script for Concerta and have at it! I really want to be on the least meds as possible, and definetly avoid ones that are so addicting etc. So, I held off until I saw my ANS dr. and he said he wasn't so sure on the diagnosis, and to wait on the meds. (I agreed) But, he said to check because it was a possibility, and to do neuropsych testing to see if it was ADD. So, I am doing that in December. So, definetly if that says no, I will not go on the meds. If it is yes, I think I will see if there are any other things to try before Concerta, and then maybe give that a try.

So, this past week she was adament all your symptoms are ADD, I can not help you if you do not take the meds... that is the only solution. She claimed she knew ADD well, b/c all four of her kids have it. I started to get suspicious then... Then, she made the claim that all her patients will the vasovagal symptoms have always also had ADD (I was like okay... I guess its possible...but really?). I am still not really sure how much she really understands about POTS, because she always goes back to vasovagal/NCS and not POTS (which was diagnosed by tilt table). So, not sure on where everything is coming from???

She has referenced one particular other patient with POTS and said they came in with a wheelchair and with exercise etc. they got to feeling better and out of the chair. Other then that it was just her blanket statement of that EVERY patient she has ever seen with this has had ADD as well. So, I figured she had a few?

Thanks for your help!!!

[juliegee]

I'm actually quite interested in exploring this topic. I think that there may very well be some overlap between ADD/ADHD (and other LD's) & orthostatic intolerances (OI's.) However, I'm surprised that your PCP (!!!) so definitively gave you a DX. Usually, a psychologist, well versed in LD's, makes this DX. However, I too, as a guidance counselor see a possible correlation.

I'm actually planning to do a research project studying this posssible connection. I suspect that many teens/young adults experience OI without ever experiencing severe symptoms. Their symptoms (lightheadedness, racing heart, impatience, etc.) are their "normal." Many with POTS and NMH never actually faint. They instinctively know to fidget before they start feeling badly. This psysiological need to move can often be misconstrued as ADD/ADHD. An oversimplification that doesn't even begin to address the cognitive issues involved with OI's, but you get the general idea.

As background, before my son was DXed with NMH, he exhibited signs of an LD. Despite a report card with mostly A's' he spent hours and hours getting his homework done. He also struggled with remembering what his teacher said & with reading. He was (incorrectly!) DXed with ADD and prescribed adderall, an amphetamine-like drug. (Which he never took.) When he was later DXed with NMH, I was surprised to see that adderall was a possible treatment for OI's too.

On the WISC IV, Mack's working memory and speed processing scores were pitifully low, like in the 10%ile and 8th%ile consecutively. This led the first psychologist to guess that Mack had attention problems. He failed to do the proper testing to make that connection & I was savvy enough to realize that his DX was off the mark. Mostly because I had seen this child focus on Legos and other building projects for hours without interuption. A second psychologist did better, more specific testing and concurred with the memory and speed processing problems, but she interpreted the results as showing that Mack really did work that slowly. His work however was very accurate, just painfully slow. He was more accurately DXed with a reading disorder (working memory & speed processing are a big part of reading), and an auditory processing problem.

After a TTT resulted in the NMH DX, Mack began treatment with florinef and salt. Lo and behold, in addition to his pysiological symptoms improving, his LD improved as well. I can't help but wonder if Mack's experience (while more exagerated than most) isn't indicative of that of many children and adults Dxed with LD's. I wonder if many have underlying OI's that they aren't aware of.

There is much academic literature correlating CFS with LD's, with attention and speed processing being the major clinical presentation. Some doctors, like my son's- Dr. Peter Rowe at Hopkins, believe that OI's are a primary piece of CFS. Hence, the correlation between ADD/ADHD and other LD's and OI's really does deserve a second glance.

If this correlation was found to be valid, the implication for students/patients would be vast. Wish me luck on my research. I'll keep you informed as to what I learn. In the meantime, your PCP may be a step ahead of the rest of us. I'd be curious to get contact info to her to see where she's gotten her info- clinical, etc.

Julie

[juliegee]

Wow, I just read your last post more carefully and I see where your PCP gets her clinical info!

As clarification, NCS (or NMH) are also Dxed with a TTT and and quite similiar in symptoms and treatment to POTS. In NCS or NMH, the BP drops precipitiously after standing still for too long. Often the patient's HR goes up to fight the drop in BP, if this happens in the first 10 mins. and is at least 30 bpm, the patient has POTS and NCS/NMH. My son's HR got to 140 bpm, but it ws at the 12 minute point. At 35 mins, his BP dropped to almost nothing. Hence his NCS/NMH DX.

I am even more eager to talk with your PCP. Please PM me so I can give her my contact info. Her experience with her four children is exactly what I am describing. Now that my son is DXed, I am literally meeting dozens and dozens of other patients with similiar experiences, including the guidance counselor's son (now 20 y/o) at my son's high school.

Definately follow up with the neuropsychologist to firm up the ADD DX before you start the meds. However, you are pretty lucky to have a PCP with such intimate knowledge of OI's.

Julie

[flop]

Julie,

some ANS doctors don't believe the 10 minute rule for diagnosing POTS and if your son's HR was less than 110 lying down would still diagnose him with POTS plus NCS (if he had a blackout on the TTT).

Similarly some doctors believe that to diagnose orthostatic hypotension the BP must fall within 3 mins of standing, whereas other doctors will take a postural fall in BP with symptoms to diagnose OH no matter how long after standing up the BP drops.

NMH and NCS aren't exactly the same thing, syncope implies that there is a loss of consciousness, whilst hypotension just means low BP and can occur without a blackout.

It is so confusing that there are so many different definitions of the terms used in OI, it makes comparing research difficult as different doctors have different criteria.

Flop

[juliegee]

Hey Miss Flop-

you're right, it is confusing. Not to be obtuse (or get off subject) but Dr. Peter Rowe at Hopkins uses NCS and NMH interchangably. The difference is semantics, according to him. It is the same phenomenon. Let me know if you'd like me to forward some of his literature. Mack's BP dropped from 120/80 to 40/0. He did faint, right after barfing- yuck. For whatever reason, at Johns Hopkins, they use the term NMH rather than NCS.

I've never heard of the 3 minute rule for the BP drop in DXing NMH/NCS. At Hopkins, they wait 45 minutes on the TTT before administering IV meds & then they wait another 45. I'm so glad my son had his TTT there as he still wouldn't be DXed according to the 3 minute criteria. Despite the fact that it took Mack 35 minutes to faint (w/o IV meds), he was VERY symptomatic & disabled by his illness. He was unable to eat (chronic nausea/vomiting) and fainting several times throughout the day. (He had to drop out of Middle School.) His weight was dangerously low & that's how we ended up at Johns Hopkins. His local doctors couldn't figure out why he was unable to eat. Once his NMH was addressed, and his subsequent intestinal dysmotility tended to; he was able to eat, stay upright, go back to school, AND showed marked improvement in his LD. We feel so blessed to have a DX and a treatment plan for him.

I do wish the terms and criteria used to obtain them were more synchronized. Out of curiousity, where are you getting your info?

Julie

[flop]

Julie - I'll send you a PM so that we don't hijack the ADHD thread

Flop

[flop]

Julie,

I've written you a PM but can't send it as your inbox is full. Did you know that there is an "archive" function so that you can keep copies of old PMs - the website will e-mail them to you (the html format seems to be the best).

Let me know by PM when you've cleared some space and I'll send my message again.

--------------------------------------------------------------------------------------------------------

Back to ADHD:

When I'm standing and symptomatic I do have terrible problems with concentration and recall, but this improves dramatically when I am sitting down. I have to sit down at work in order to be able to function at a decent cognitive level. I can see why someone might think that I have ADHD tendancies if observing me when I am standing and trying to concentrate on something, however I don't fit the diagnostic criteria for true ADHD at all.

Flop

[Steve]

I've never heard of the 3 minute rule for the BP drop in DXing NMH/NCS.

This seems to be the common criteria for classic orthostatic hypotension, which isn't the same as NMH. Most doctors know about orthostatic hypotension and are able to test it in their office, at least according to this website (see "testing" section). It's the "delayed" form that few doctors are aware of and requires a 45-minute tilt-table test.

[Steve]

I've never heard of the 3 minute rule for the BP drop in DXing NMH/NCS.

This seems to be the common criteria for classic orthostatic hypotension, which isn't the same as NMH. Most doctors know about orthostatic hypotension and are able to test it in their office, at least according to this website (see "testing" section). It's the "delayed" form that few doctors are aware of and requires a 45-minute tilt-table test.

For convenience:

"Most doctors are familiar with orthostatic hypotension (OH), which can result in fainting (or syncope, pronounced "sin-coh-pee") very quickly after standing, and can be diagnosed with a simple in-office test of taking the blood pressure first while lying down and again upon standing.

Unlike those with OH, which occurs within the first three minutes of standing, CFIDS patients with NMH or POTS often have a delayed form of orthostatic intolerance, meaning that heart rate and blood pressure changes don't develop for many minutes after standing, making the standard in-office test for acute orthostatic hypotension ineffective in diagnosis." [

link

]

And:

"Orthostatic hypotension is a physical finding defined by the American Autonomic Society and the American Academy of Neurology as a systolic blood pressure decrease of at least 20 mm Hg or a diastolic blood pressure decrease of at least 10 mm Hg within three minutes of standing. The condition, which may be symptomatic or asymptomatic, is encountered commonly in family medicine." [

Link

]

[Mrs. Burschman]

Welcome to the board, grarduh! And thanks for the info!

We're always happy to have new members, though we wouldn't wish these disorders on anyone!

Amy

[juliegee]

Honestly, I really didn't mean to hijack this thread... I think AJW 4055 may be onto something & just wanted to share my interest. However, I appreciate everyone's side efforts at educating me.

Miss Flop, I finally figured out how to empty my PM mailbox. I'd love to hear from you anytime. I found the article from Dr. Rowe that I had referred to: "NMH is sometimes known by the following names: the fainting reflex, delayed othostatic hypotension, neurocardiogenic syncope, vasodepressor snycope, vaso-vagal syncope." Hence, I have always used the terms interchangeably. I realize that this is just one doctor's opinion, but he happens to be the one who taught me about the disorder. I just assumed his "take" on this was shared.

I, too, don't have any overt signs of an LD. I have POTS and have had a fairly easy time learning. However, my symptoms didn't show up until after my post graduate studies were complete. Like you, when I'm symptomatic now, I have major cognitive issues. (I can't find my shopping cart at the Super Wal-Mart :-) I can't imagine trying to learn when I feel so badly. Sitting or lying down usually resolves that for me, but not always. Dr. Rowe has taught us that POTS/NMH/NCS can also occur when sitting still, like at a desk for long periods of time, or after a meal high in carbohydrates- not only when standing. So, the implications for students (of all ages) are very real. I didn't mean to imply that everyone with POTS/NMH/NCS has issues with learning. However, since my son's DX, I have seen and met quite a few folks with OI's who do have LD's (that improved when their physical issues were addressed) and I feel drawn to look into the correlation.

grarduh, welcome & thanks for that clarification. "The 3 minute rule" is for OH, not NMH or NCS! OH is clearly a totally different phenomenon. I feel grateful that my son was given the test appropriate for his condition. This "delayed form of OH" or NMH/NCS that my son has has been linked to CFIDS for him, as well. Most of the academic literature that has been published actually links LD's to CFID. I'm looking into the link between OI's and LD's. I can see that the semantics of this will be difficult to get through!

Like AJW4055, I'd also love to hear of anyone else's experiences linking ADD/ADHD (or any LD) to POTS/NMH/NCS.

Thanks-

Julie

[ajw4790]

Hi all!

Thanks for all your comments!

The OI/NCS/NMH etc. discussion was also very informative, because some of it was different from what I had been told and had seen. So, it was a new and interesting outlook! I might actually understand some of it better now!

For the whole ADD thing...

Yeah, I still don't know on one hand, but I could see it or on the other hand, my symptoms could all stem from other issues (fatigue etc.....).

It will be interesting to know how it plays out!

Mack's Mom, Your posts are very interesting!!! You have first hand knowledge of all this which is a cool and different perspective! You will have to tell me more about what you have found and your experiences! And definitly how your research plays out!

It was kinda funny, because my PCP said to that she had no specific knowledge of research out there, but there has to be, because she sees it so much. I haven't specifically looked, but it sounds like there may not be any currently.

Let me know if ya'll have any more info!

Thanks!!!!

[ajw4790]

I just saw we posted at about the same time!

No one hijacked anything! I think it's fun, to compare what we know/ have learned!

Share all info/opinions (okay maybe not all, but close... I don't really need to know your favorite color or movie)!!!

[Suzanne]

Really interesting. Just wanted to throw in my two bob's worth. I have 2 ADHD boys and I am well versed in their symptoms and treatments. I have never considered I had ADHD because I had POTS. I do share in some of their symptoms, but only a few. There are established criteria for diagnosing ADHD and it is not all about busyness, attention. There is a list of social behaviours to be taken into account. Did your doctor explore those? I am surprised your doctor makes this huge statement. Maybe some patients have both, but everyone? I would keep researching and have an open mind.

[ajw4790]

Suzanne,

Hi! That it is interesting! Thanks for your input! It helps! Yeah, I am keeping my mind open and trying to make sure and get multiple opinions. It was a strong statement... That was why I was curious to what everyone's experience had been.

P.S. Out of curiousity what is a bob?