Treating Add When You Have Pots

[cmtaylor5]

Hi,

My soon to be 16 year old son who has POTS and EDS III, was recently diagnosed with ADD (without hyperactivity). His doctor is currently doing some reading to try to come up with what would be the best medication to try.

One of her concerns is that he is 6' tall, and only 117 lbs. He cannot afford to lose any weight at all. We are at the point where medication really seems necessary if he is going to be able to complete his school work.

I have read some old threads on this topic, but they only discussed medication options. Has anybody out there had a similar situation? Were you able to find a med that did not decrease appetite, yet did not cause tachycardia?

Thanks,

Carolyn

[babettess]

My 17 year old daughter with POTS also has ADD. Before she officially got the POTS diagnosis, she was on Strattera. She seemed to tolerate it ok. She did not take the Straterra her senior year of high school as her schedule wasn't that demanding. Now that she will be starting college, she wants to go back on it. I'm concerned about how she will handle it now, but since she tolerated it in the past, I guess she will try it again. Of course we have to check with her doctor first, though.

We are also seeing a geneticist in August to confirm EDS. Seems you and I have a little in common! Do you also have POTS and EDS yourself? I have POTS and will be seen by the geneticist to confirm the EDS too.

Good luck finding something that will work on the ADD and not affect the POTS. Sorry I don't have more advice for you.

Just a last minute thought though, my neurologist writes prescriptions for his college students that have POTS so that they can take their tests while lying down!! Make sure your son's school is aware of his conditions as they should be able to make some accomodations to help both the POTS and ADD.

Babette

[cmtaylor5]

Thanks, Babette,

Yes, I also have POTS and EDS III. My son went to a geneticist at Vanderbilt for a dx. I am even more hypermobile than he is, and since it's genetic, even though I didn't see the geneticist, my internist dx'd me with EDS due to my son's dx. (does that make sense?)

It was much more helpful than I thought it would be to have that EDS dx. It explains why beta blockers are so successful in treating me (from what I was told), and it also helps to explain the 10+ spinal herniations and subluxations I have. It's good to know that my son can start early protecting his joints. Before Vanderbilt, I had a bunch of tests and had come to believe that my POTS was primary.

Where are you going for testing?

Carolyn

[babettess]

Hi Carolyn,

I made a big mistake in what I told you earlier.....my daughter took Adderall, NOT Strattera. Sorry about that, the brain fog sets in at times. Good thing I keep good paper records to look at.

I am being seen in Genetics at West Virginia University, which is a nearby teaching hospital. I decided to go there first since it is close to me and I have traveled so much trying to get the POTS diagnosis. I am the one being seen even though my daughter is more hypermobile than I am. All the doctors who I have told that I am being evaluated to confirm EDS say they think I have it. I guess the geneticist will just confirm it. I think we have the hypermobile kind and hope the geneticist agrees.

I am also helped by beta blockers. I am still learning about POTS and really don't know much yet about EDS. I did finally find a neurologist who seems to know about POTS. He has confirmed that I have POTS through his own testing and when I meet with him next we will discuss options to help me feel better. I am seeing a Physical Therapist who knows about EDS so as soon as I get the confirmation, he will start working with me on the EDS issues. He is actually the first person to tell me about the possibility that I could have EDS.

So I guess the POTS is secondary to the EDS!?!?!

I hope you and your son are successful in finding a medication that will help him be as successful as possible in school. My daughter also has ADD without hyperactivity. She's had some teachers who were understanding and some who weren't. Overall she was successful; despite the ADD, POTS and EDS. We are a little concerned about how she will do in college, though.

A few things to consider are - Could the POTS be causing the attention problems?? Can he focus if he is lying down?? Does his attention level change according to his POTS symptoms?? I think with POTS, lack of oxygen to the brain could mimic ADD. Just a thought........

Babette

[Reef Diver]

I was diagnosed with inattentive ADD back when I was in the 8th grade or so. I had it reconfirmed for accommodations last year at my college testing center. I recently had to go off my meds for the POTs testing this summer but I intend to be back on them within the next two weeks.

Through trial and error I've found Adderall XR to work like a charm. I take the max adult dose (I think it's 30mg? Not sure off-hand) Adderall seemed to raise my resting heart rate slightly but made the overall difference between laying and standing lower. I find it very hard to live day-to-day life without Adderall right now... I would never be able to attend college without it!

For the ADD my public university (FSU) gave me note-takers, extended test/quiz time, and distraction-free testing environment.

I'm supposed to take 28 credits hours per year (Fall and Spring) to keep one of my scholarships. Unfortunately uncontrolled POTs led me to be very sick/many bad POTs episodes including a few during Finals week to the point I had to take an incomplete in one class and finish over the summer. Now I'm hoping my uni will let the credit requirement slide to 24 credits total or let me make them up during the summer!

Good luck finding meds that work!

[Maxine]

I'm 50 years old, and when I was 6 I was diagnosed with ADHD. I could not tolerate ritalin. I went without meds for all of my school years, and had a very difficult time despite above average IQ. ADD or ADHD does not affect IQ, but unfortunately it affects the ability to learn and comprehend like the average person without ADD/ADHD. I hope you can find something that works, because I am still self conscience today of dropping out of high school because they put me in OWE--------I think it was something like (occupational work program) where a bunch of burn outs (aka---people who get high) sit and do nothing part of the day, and work the other part.

In the late 60s and early 70s it was very unfortunate that kids with ADD/ADHD did not get the attention they deserved. Today many of them are unemployed, self medicate with alcohol, and suffer from drug addiction. Some came out OK, but I was in that generation, and we were terribly misunderstood. I didn't know how smart I was until I took my GED, and later went to college. My GPA was 3.8 at the private college, and 4.0 at the community state college. Unfortunately I had to leave the private college very early, as my POTs came along, and I crashed severely. I was working full time as an office manager working almost 50 hours a week, and I couldn't do both. It wasn't long before I coudln't work either.

I didn't go to the community college until after POTS. I had an improvement with symptoms after cervical spine surgery, but it was short lived. I was able to go to school for about a year. HOWEVER, I found that the wellbutrin Dr. Grubb gave me for my POTS also helped with the ADHD. It made things eaiser for me, and I noticed a difference. When I was at the private Catholic college==(Lourdes College), I was not on any meds other then beta blockers for tachycardia, (not diagnosed with pots yet, so tachycardia was considered ideopathic. I tried to get assistance for my ADHD, but the advisor said I didn't need it. He had no idea how difficult it was for me because he was looking at the GPA---not how much more difficult it was for me verses the other students.

Wellbutrin may cause more weight loss for your son though. However, IT CAN cause weight GAIN. IT did for me unfortunately. It was OK for a while----helping me gain some weight back that I lost, but then I gained more. I'm a few pounds heavier then I'd like to be. It might help your son gain weight.

Some people with POTS can't tolerate wellbutrin. My POTS is secondary to EDS, and I have vascular issues.

I pray something works out for your son. My son is 28 years old now, and diagnosed with ADD without hyper activity. I almost slapped one of his teachers who said he would never do better then a "C" average. He ended up doing much better, and in fact took four years of Japanese, and his Japanese teacher wanted him to continue in college. He didn't end up taking Japenese, but is now majoring in Geography and urban planning. He went to college straight out of high school, but wanted to goof off more then take his classes seriously---------(he was distracted easily----and still is. Now he's married, and has two beautiful girls, and BACK in college. He's doing well, and has a good repoire with his professors and instructors. He used to house sit for some of them with his old girl friend. I always believed in my son no matter what----------------I still rave at his poetry. He get embarrassed when I do.

I have a lot of passion for folks with ADD/ADHD, as it's a different world for these kids. Some of them are very gifted. Well, I guess you would be when you have to train your brain to follow both the person your talking to, and at the same time your brain wants to follow all the rest of the conversations in the room.

Talk about multi tasking------------these people don't have a choice.

Here's a poem my son wrote when I was going through some of my worst times with my health problems, and we had a local POTS/dysautonomia support group that I worked in with another person for about 3 years. He wrote this for the dysautonomia conference we had in Oct. 2002;

Dime Store of Hopes and Dreams

Wandering in the shadows, alone and distraught

The unquestionable strength of a few, ignored by the masses

So crass, so un-empathetic, no one understands

It feels like no one ever will, all your zeal spent

At the dime-store of hopes and dreams

In the middle of the night Spouse, mother, brother sister

Awoken by screams entailing those dreams unfulfilled

No one to turn to, a wasteland of unawareness

The futile fruits of passionless practitioner?s labor

Makes backwards strides in the context of you, hurt

At the dime store of hopes and dreams

Doctors look at full shelves of needs and wants

For compassion, and healing energies

Boxes of broken homes, and broken hearts

Not even acknowledged by so-called care-givers

Not a care in the world to give

I am the son of a wanderer in the shadows

I too do not fully understand the extent of all this

But I have bore witness to the pain, and the strength

In no way can I put myself in your place, or say I ?understand?

But I can say this: the war on ignorance is a war of attrition

In the dime store of hopes and dreams, you have found

Your token of pride, your undying will to survive

Mike J. Dessert

Sorry for the long winded post, but I do get that way.............

Maxine :0)

[cmtaylor5]

Thanks to all for you input and empathy!

Babette, as far as the brain fog affecting the ADD or causing it, I do think at times it contributes, but looking back, my son has had inattentive issues that go way back before he had POTS symptoms.

My older brother has about the most severe case of ADHD I've ever seen. I think because of the severity, ADD without hyperactivity just didn't stand out to me so much. My brother is now a bank president and very successful, but he still struggles with attention issues. I think in many ways his ADHD helped him to develop skills that made him a stronger person, but it was not easy.

Maxine, I appreciate all your comments. I am actually a dyslexia specialist, so I am very well versed in fighting for rights and accommodations for my clients and one of my own children who is dyslexic. Dyslexia is co-morbid with ADHD (primarily the inattentive type) more than 40% of the time, and these students are especially in need of accommodations.

I will be happy to take all of your comments to my son's internist as she has asked for input from all the "experts" who suffer from POTS! From what she says, it is often trial and error with ADD medication, I'm just hoping that there will be no weight loss during the trial period. My son is just getting back on his feet after a 6 month bout of severe mono, so he could really use a break!

Once again, thank you for all your responses!

Carolyn

[ramakentesh]

Research on the psychological profile of POTS patients show that we all prettymuch exhibit reduced attention spans. the reason for this was suggested as reduced cerebral blood flow.

Makes you wonder about the nature of ADD in your sons case.

[Maxine]

That make sense ramakentesh. However, I can't imagine have reduced cerebral blood flow since I was 6 years old.

My son shows some POTS symptoms, and always has a fast heart rate, but for now he's very functional, so he continues to exercise and live his life. He may never have major symptoms, as some people stay stable, or they just don't have ANS dysfunction. They may just be going through a temporary stress induced type of ANS dysfunction-------------wouldn't that be nice for the rest of us.

I can tell a difference with my ADHD, and my reduced cerebral flow. With my ADD I have trouble following one subject, and my mind wants to multi task.

With the reduced blood flow it just gets in a "zone", and it takes everything I have to function and communicate. My speech also slurs, and I have times where I pause, and can't think of the words when holding a conversation, or my speech is broken up.

With my ADHD----probably ADD by now---------------I almost feel manic with my communication at times. I get on a subject, and I get to the point of repeating myself. I really do hate this. I constantly have to be vigilant to watch this.

Maxine :0)

[ramakentesh]

true and good points. B receptor hypersensitivity could be another angle. This seems commonly reported in EDS patients but I never saw an actual study on this. Or ofcourse it could be just plain old ADD