Brain Fog? Could it be beta blockers? Anxiety?

[Maryka]

You do realize, BarbJean, that Dietz and cohorts at Johns Hopkins, always use Atenolol in their studies? Am I correct in thinking that your son's part in that VERY FAMOUS Losarten study is done now? If his part is done, he could try other beta blockers now. Find out what is new and might have fewer brain fog qualities! (You probably know that Dietz and cohorts are comparing Losarten to plain old Atenolol, which was considered the mainstay to fight aneurysms for the last couple of decades? If Losarten beats out Atenolol on the tests, then there will be a lot of changes in prescriptions.) Please excuse all spelling errors above...

 

[BarbJean]

Thanks for the input, everybody.
Maryka, You are right. Colin was in the "famous"study. It was when they were doing the last echo of the study that we saw that the aortic root had grown .5 cm over the past year. We know he was on the atenolol even thought they would not tell us for sure. While in the study, they actually decreased the dosage he had been on over the years which was prescribed by Dr. Pyeritz. Of course, I was praying that the Losartan would make everyone's condition reverse itself and the study would be ended early. Unfortunately, not the case. In Marfan mice, the tissue actually became stronger and aortic roots became smaller. Does not seem to be working the same in humans, but maybe that is due to the variety of mutations in Marfan. Did you read the story of the little boy named Nick who Dr. Deitz treated with the Losartan. He has a severe infantile form and supposedly the drug has helped him. Dr. Pyeritz still wants Colin on 100mg and when we mentioned this to Dr. Cameron, he did not seem to think it was a high dose. Sometimes I wonder if the fact that Colin was diagnosed with ADD and was so lackadaisical growing up was due to the fact that he has been on the bb since age 6. But, I just felt we could not take the chance of having him on it.
Anyway, right now he reduced it to 50mg and he seems to be feeling a little better. I bought a blood pressure cuff and it seems to be staying low on the 50. Only 4 weeks to surgery, so we figure it can't hurt and that was the attitude of his local cardiologist.
Al and T-money, sounds like you had similar feelings on the bb. Maybe after Colin's surgery, he can try a different one.

 

[Maryka]

Only (probably) about 4 weeks to my hip replacement surgery too! I am not clear. Did they have Colin on both Atenolol and Losartan in the study? I heard the Hopkins lecture (w/ those mouse slides) by Dietz in March (there is a thread out on this list, I think, about what I heard there). I guess I thought some people were only on Atenolol and some were on Losartan. It sounds like Colin was on both.

My situation turned out to be not true Marfan and my changing from the "gold standard" Atenolol to the Zebeta turned out to be OK. My aneurysm stayed fairly steady in the original size. But, in 2002, Dr. Liang at Stanford was the first to get a good echo showing that I had a bicuspid Aortic Valve. He said the aneurysm would probably stay stable due to my BBs, but predicted the Valve would eventually need to be replaced. That happened in late 2008. (In 1990ish, a Hopkins geneticist predicted that my joints would continue to get worse, especially my right hip. That is what I am going to have replaced now in 2010.) Losartan is the first med that seems to actually reverse some of connective tissue disintigration some of us have. But, you know that already, BarbJean.

 

[nngbwh]

I been taking 75mg metoprolol since my surgery. I do get brain fart sometimes.

 

[Jeanie]

Please re-read what I found about Concerta. Whether that drug contributes to his brain fog or not, it is documented to be dangerous for anyone with a cardiac abnormality. That is in message post 12. Good luck to you and Colin and keep us posted!

 

[heartman77]

Hmmmm they put me on Metoprolol also....I keep asking my wife what day it is.....lol.......

 

[Lynlw]

Barb, I know Colin is a young adult, but was thinking about this and all his meds, and the fact he has both Marfans and ADD. I belong to a very good online support group "pdheart" run by the Congenital Heart Information Network http://tchin.org/support/index.htm They have a few online groups, (school age, young adult, different CHDs ect) but the main one, that most everyone posts at (even if they belong/post to different groups/subgroups too) is "pdheart" . Many of the parents that post most often have younger kids, but alot of us "older" kid parents belong and chime in if we have experience to share.
Anyway, many of the kids with CHD have either learning disabilities or emotional/social ones and some take different meds both for teir hearts and/or learning disbabilities ect. . Every once in a while there will be discussions about ADD or adhd and different meds. I'm sorry I haven't paid much attenton to those discussions but was thinking, maybe you might find it helpful to join and ask what their different cardiologists recomend or say is "safest', since all of the kids /young adults have heart problems too, some very complex with numerous surgeries thru out childhood. Of course I wouldn't take any changes based on what others have been told is safe or to avoid, but it might give you some ideas to ask Colins different doctors about. (After surgery when your life has calmed down soon.)

 

[BarbJean]

Maryka, You are having a hip replacement in four weeks? Where are you having that done? In the study, you were on either one or the other. As soon as he was out of the study in April, Dr. Pyeritz wanted him to take both. I know you were once considered a "Marf", but why was it decided you were not. I know some people that don't meet the 3 out of 4 criteria for the diagnosis, but are medically treated as thought they do, since their cardiac problems are like those of a Marf. Did you have a bicuspid valve?
Jeanie, I told him not to take it for now. I think I will have him read the article you posted so he sees I am not just being the usual anxiety ridden mother he thinks I am.
Brain fog seems to be better since he dropped to 50mg of atenolol from the 100mg he was taking. Last nite, I took his pressure and the top number (I know alot about the heart, but can't remember blood pressure very well) was 102. I figure that is pretty low, so the 50mg seems to be doing the job.
I get brain fart/fog too, but I think that comes with being 58 now.

 

[BarbJean]

Didn't even see the last two posts. See, must be brain fog. I didn't remember there could be a page 2. Lyn, thanks for the referral to the message board. I am going to look it up.

 

[Jeanie]

LOL BarbJean, on the 'I get brain fart/fog too, but I think that comes with being 58 now' - I am right there with you!

 

[Maryka]

BarbJean: When I was first diagnosed as Marfan, no one saw a bicuspid aortic valve. I have lots of loose connective tissue things (as did my father, who, it turned out, lived to be almost 90 and did not die of anything related to his heart or his extreme double-jointedness). Like my father, I have a jaw too narrow for the rest of my face and have a very high pallet (excuse my spelling). My feet are long and narrow, but, unlike my father, I do not have flat feet. My fingers are long and double-jointed. But, I do not have long arms and legs or have the distinctive eye or lower back defects that go with Marfan. When it was discovered that I had the bicuspid aortic valve, then all else fell into that category. But I had made a lot of wonderful Marfan friends in the years when I was still Marfan and Marfan-like! Right now I am suspecting that my father was probably on a mild Ehlors-Danlos spectrum. (BTW, my father had to have a hip replacement, but he was quite elderly at that time.) My heart valve, I am suspecting, might have inherited from my mother's mother who died around 1930 of "bad heart valves"--long before I was born. Dr. Cameron told me that bicuspid heart valves can seem to skip generations (which does not happen with Marfan) and he warned me that my grandchildren might get the bisucpid aortic valve. I have not mentioned this to my son or daughter about their babies, but I will some day. (Back in 1990 I got my nieces and nephews to consider they might have Marfan, but they all thought I was just an idiot, which I guess was a somewhat valid assessment.)

 

[BarbJean]

Maryka, you have quite a medical history! It would be strange to think for so long that you had Marfan Syndrome and then be told you don't. Your son or daugher don't have bicuspid valves too, do they? Were they checked out for Marfan back when you thought you had it? And-tell your nieces and nephews you are far from an idiot!

 

[Maryka]

BarbJean: I managed to get (free) total heart-and-aorta workups and physicals for both of my kids, through connecting to the Human Genome Project at NIH, and some studies at Johns Hopkins. There was some added interest in my daughter because she has all of those connective tissue problems and they used her to show med students what "Marfan feet" were like, even though she technically does not have Marfan Syndrome. My kids had perfect hearts and aortas in their early 20s. However, my son is now in his 40s and I hope he knows that he might be a candidate for regular old clogged artery heart disease! If I indeed got my bicuspid aortic heart valve from my maternal grandmother, it truly skipped a generation. My mother had no heart disease at all (died of Alzheimers) and my father just generally fell apart and died of pneumonia (he also was senile). Gee! I guess I am doomed not to get through this life alive, ha ha!

 

[TXGal]

I know exactly how your son feels.. Since my surgeries in 2000 and starting meds for my heart, I have never felt the same mentally since. I have always wondered, was it the 3 surgeries and being on a ventilator 3 times, is it the heart meds, or is it my migraines with auras I have from time to time? I'm down to just Coumadin & Lanoxin now as far as medications, so I'm not sure if either of those could be causing the brain fog. But, I truly feel mentally since 2000, I have never been the same.
About once a year I break down and discuss this feeling with my husband and mother. It's hard to explain, you just know when you're thinking different. I used to have no problem talking socially, now I feel like I constantly blank out or I can never think of the words I'm trying to say. A lot of times I am quiet during a conversation with strangers because I know if I start a sentence, half way through I'm going to forget what I'm saying! This is almost a daily struggle for me and no, age has nothing to do with it. I started feeling this way around age 21 (after my surgeries & started meds & migraines). At times I feel better, but for the most part, I can't quite figure out what has happened to me.
I definitely get the "oh I feel the same way Kristen, it comes with age" story from my mom.. which really just frustrates me, because it's not old age for me and don't know where my memory has gone!
In college I've had no problem. But, there's just something odd about this fogginess and socially when I'm even having a normal conversation that frustrates me.
I'm sorry to hear about your son, but sometimes it helps people like me to know I'm not alone with this crazy feeling! I hope things improve for your son. =)

 

[BarbJean]

Thanks, Kristen. It sounds so much like what he is describing. I hope you can eventually get answers for it. It must be really frustrating to know you are not remembering things the way you used to. About 10 years ago, I was put on Lanoxin for a bout of tachycardia. It made me feel like I was swimming in mud. I fell into a depression with it also. I was so glad to get off it. Do you think it could be that or have you been on that for a long time?

 

[TXGal]

It could be Lanoxin, but I don't think I'll be able to get off of it. I've been on Lanoxin since my last surgery in 2000, which is when my migraines and brain fog all began. I requested 6 months ago to get off of Toprol and it has done wonders for my migraines. I don't have them near as often, or if I get the "aura" before hand, a lot of times I don't get the migraine. So, I'm thinking Toprol had something to do with my migraines.

I believe that since most people don't start on heart medications until they are older, that possibly some of the symptoms that are caused by some of these medications are laughed off as "old age". I'd be interested in a study of younger adults that are on these medications and the symptoms that have occurred since taking them. =)