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I have had Long qt syndrome for a year now and wondered if you have to watch what you eat. I love eating eggs, macaronni, fish, rice and beginning to eat spicy turkish foods mainly. Can anyone help me to find out if I'm allowed to eat what I have been eating or if I'm limited to certain foods.
Thanks
Asthma Atenolol Propranolol Pregnancy Syncope Long QT syndrome Beta blockers Pacemaker Stress
Do you know what type LQTS you have? I have type 2, which is a potassium channel issue, and so have been advised to try to keep my potassium levels on the higher end of normal. Because your body needs magnesium to make use of potassium, I've tried to eat a diet that is rich in both. Good choices include fruits, vegetables, nuts, grains, etc. I have a list that I can share if you are interested.
Regarding restrictions...the only thing I've been told to lay off is caffeine. For me, salt is not an issue (the beta blocker I'm on keeps my blood pressure low, so salt actually helps), but it could be for someone with cardiac disease.
I'm not sure what type I have got, the problem with me is which happened quite recently and I think that's how I noticed that I had something wrong with me. The problem is I can't be in a room when people are arguing in other words if I get stressed out I get huge headaches and then the heart starts.
I would be interested in kbauhs' diet and how you determined it was suitable for LQT2. My 10 year old son was recently diagnosed w/LQT and the genetic testing just came back classifying him w/LQT2. Thanks.
My doctor advised that I should keep my potassium and magnesium levels on the high end of normal. Low potassium can trigger LQT2 and your body needs magnesium to make use of potassium. Here's the diet. I compiled it from several websites that identified foods high in both.
*Great sources of potassium and magnesium
Fish: salmon, tuna
Vegetables: artichoke (globe), asparagus, beets, broccoli, carrots, brussels sprouts, cauliflower, celery, collard/mustard greens, sweet corn, kale, leafy green vegetables, mushrooms, okra, parsnips, green peas, potato (skin on), pumpkin, sauerkraut, spinach, squash (esp. winter), sweet potato, tomato, tomato products, turnips, vegetable juice cocktail, yams
Legumes: black beans, black eyed peas, kidney beans, lima beans, navy beans, peanuts, pinto beans, soybeans
Fruits: avocado, banana, blackberries, black currants, cantaloupe, kiwi fruit, orange, papaya, strawberries, watermelon, incl. dried fruits (apricots, dates, figs, peach, pear, prunes, raisins)
Grains: barley, brown rice, cornmeal, millet, wild rice
*Other Foods High in Potassium
Meat, Fish, and Other Protein: beef, chicken, turkey, pork, flounder, cod, sardines, milk (fat free or skim), yogurt
Peas, Beans: white beans, lentils, baked beans, chickpeas, split peas
Grains, Cereals: bran cereal
Fruit: prune juice, orange juice, apple juice, grapefruit juice, honeydew melons, nectarines, pears, grapefruit, blackberries, cherries, grapes, pomegranates, mango
Other: salt substitute containing potassium
*Other Foods High in Magnesium
Meat, Fish, and Other Protein: halibut, scallops, rockfish, oysters, shrimp, soy milk, tofu
Nuts, Seeds: cashews, filberts, pecans, english walnuts, almonds, pumpkin seeds, sunflower seeds, sesame seeds, flaxseeds
Grains, Cereals: quinoa, tempeh, buckwheat, whole grain rye, bulgur wheat, spelt grains, whole grain oats, whole grain cereal, whole wheat bread
Vegetables: swiss chard, summer squash, green beans, fennel, eggplant, cabbage, cucumbers
Fruit: raspberries, boysenberries, pineapple, plantain
Other: spices: coriander seeds, cloves, basil, ginger root, mustard seeds blackstrap molasses
To Kbauhs
Basically:You describe Mediterranean Diet,without
stimulants(Hold off Caffein).
Please detail any vitamins allowed,the dosage and the rational for taking it.
Thanks so much for your reply. Now to break it down so my 10 year old "mac&cheese king" will eat it. And he's highly allergic to nuts. We have carried an epipen for years for the nuts and now he's not supposed to have the epipen b/c of the long QT. Unless we think he's about to suffocate w/a nut reaction. Hope we never have to make that decision! His doctor talked briefly about potassium but said he did not want him on supplements at this time, but I've been reading online and came to the same conclusion you have about eating a better diet. His diet is terrible. Do you think any of the sports drinks help at all w/the potassium?
To mom3boys:
It's hard - even for adults - to eat the way we should all the time! You might want to try substitutes for the things your son likes. For example, use multi-grain pasta in his mac and cheese. I drink Propel instead of sodas, since that has potassium added but doesn't have the sugar. Experiment, and hopefully you'll find things that work.
To DrD11:
I take 20 MEQ Potassium CL and 250 mg Magnesium daily. I also take a multivitamin. We check my blood levels from time to time to ensure the potassium levels are where we want them. I might have been able to do it with diet alone, but having had one cardiac arrest and another day of a VT storm, we decided to play is safe and add the supplements following the LQT2 diagnosis.
Hi kbauhs and all,
Thank you for the diet list. I've also concluded that diet is crucial in helping to protect those with LQT2. Four of my children and myself have been genetically tested positive. I don't have time to find the reference right now, but I found research that indicated Omega-3 has been shown to decrease the QT interval (if you google "Omega-3 and LQT" you'll probably find it). Also, I've found other research that indicates a correlation between insulin/blood glucose levels and QT interval--from what I've learned, it seems that it's important to keep a balanced blood sugar level (just like a diabetic). Perhaps it has something to do with the adrenalin response that occurs with extreme dips and rises in blood glucose levels. Incedentally, I think that's one reason why the higher risk times for a LQT2 patient is in the early morning hours, right after excercise, and during stress--those are all times with blood sugar levels and adrenalin levels are at extremes.
The sports drinks may not be a good idea because of the high sugar content, as well as the high sodium level (which will dilute the potassium in your blood). The best thing to keep up your electrolytes is probably water. However there are a couple of good nutrition companies ("Reliv" and "Isogenics") that have "energy drink" products with electrolytes that are good options).
Another nutrient to keep in mind (along with potassium and magnesium and Omega-3) is B6 because it is important in helping your body assimilate other nutrients. When you are deficient in B6 (and most people are), you can become deficient in many things. It is particularly important in breaking down Omega-3 to the DHA (the componant that decreases the QT interval). Oh and "Isogenics" carries a fabulous line of supplements and an Omega-3 that doesn't make you burp fish flavor if any one is interested.
Good luck all!
hi thanks for all the replies I live near London and have known that I've long qt for almost 18 months now but I don't know what type it is. All I know is that it took several types of beta blockers for my body not to react to
HI Bonnie,
i know this discussion is a bit old, but i needed to answer you, especially regarding some of the other dietary advice you have received here.
I have LQTS2 as well, and was diagnosed about 1 year ago, though my first attack happened at age 13, and i then had 14 attacks which almost killed me, 10 years ago. I now have a defibrillator.
You need to ask your cardiologist for a list of foods and drinks to avoid. Among those, green tea, grapefruit and pineapple can be fatal to a person with LQTS2. They block potassium to the heart among other things, and in my case caused a recent attack. Please be careful with what you eat, especially foods that may prrovide energy boosts.
have a look at these links for further reading:
http://www.google.co.uk/search?q=grapefruit+juice+side+effects&ie=utf-8&oe= utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
I hope this will help in preventing any further complications.
Im based in London, so if you know of any LQT support groups, including for family and friends, let me know.
Best of luck
Caro
hello to all. i'm 24 yrs old and was diagnosed when i was 2. my mother, as well as child and grandfather and uncle all have LQTS. we are type 2, but i have to say that isn't all that relevant in reguards to dietary restrictions. i also would say that everything in moderation would be the key. there isn't any one food that if you take a bite of, will send you into SCD. eating the foods rich in potassium and magnesium are, of course, a good idea. however, this is not a disease that can be controlled by outside sources. this is an electrical syndrome of our hearts that can only hoped to be kept in check... controlling your diet will not have a great affect on your condition, especially if your drs decided to put you on betas. once you're on the meds, then obviously your condition has to be controlled by sources outside of your natural ability.
Grace and peace to all. Thank you all for all the info. I have a question for bortner. You was diagnosed at the age of 2yrs. old and now you're 24yrs. old. R u taking any medication? I just received my son's results and he's LQTS2. My son is 11 yrs old and i'm losing my mind with this. I never cried so hard in my life!. He is my first and only child. As a mother I want whats best for him. One of the test was a Genetic testing and it showed LQTS class 2 mutation. The same day I got the results I was then tested. I'm waiting for the result. The Dr. prescribed him Nadolol 60mg to start with. I'm alittle concerned about meds. Can u help me regarding this? since you've been dealing with this diagnose since 2 yrs. old. Thank you so much.
thanks for all the messages. I've got a check-up on October 2nd, so I will ask what foods I should avoid. Thanks again
to Jenn2009:
i'm so sorry that you are dealing with this. there is nothing more difficult than feeling so helpless against a problem that you can not control for your child. yes, i've been on meds since i was 2 years old (1987). i was on propranolol until about 2 years ago. the dosage had increased to 240mg/day and required 2 tablets, so for financial reasons i asked my EP if i could change. he put me on Nadolol, 40mg/day. i also had a pacemaker implanted a week after i had my child, due to problems that arose from hormone changes after the pregnancy. when i was 6 weeks old, my mother went into sudden cardiac death and recieved an ICD. that being said, none of the men in our family have any device... only medication. in our case, it really seems to be the changes from pregnancy that trigger episodes for us. i'll admit that my mother and i always have more palpations around "that time of the month", so hormones really seem to be a factor. i have always tolerated the meds well and have never experienced any side effects. my 1 yr old is on propranolol, my mother is on atenolol, and my grandfather, uncle, and cousins are all on corgard (sp?). even though every case is different, in our family, the males are at much less of a risk. please let me know if there is anything i can help you with.
thanks for your reply. I'm on nadolol and keep having really bad headaches. I'm almost 20 and I got told on my last check-up that if I keep getting these bad headaches and tiredness that I will have to have a pacemaker. Does that affect you when your pregnant, because I do want to be able to have children when I'm older, that's the thing that I want to know the most and are there things that you can't do? Then again I had to beg to be allowed to go swimming so at the moment it makes no difference.
to Pebs_Bonnie:
i'm always trying to imagine how i would handle this problem if i were seeing it with fresh eyes, just finding out that i had LQTS...and i suppose i would be hanging on every word my doctor said. however, my situation is very different. this has just been part of my life for my entire life. i've been learning and thinking about the syndrome for 24 years. that combined with the less than desirable experiences we had while dealing with my sons doctors has made me a much more independant thinker, as opposed to someone who takes the doctor's word "as gospel" (as we say here in the south). i'm not sure who told you that you can't go swimming, and while i realize that it is dangerous for you to swim alone, and extremely dangerous if you so much as even think of strenuous swimming... what i would suggest is that you think of your body and its limitations. for example, have you ever swam in the past? and what was the result? since i'm talking to you now, i'm assuming swimming is usually an acceptable activity for you. now that you know you have an unpredictable arrythmia problem, i would make sure it is leisurely and relaxing, not increasing your heart rate. my point is, every BODY is different. while its important to consider your doctors words, ultimately you have to be the judge on what is appropriate for you.
i'm not 100% on the affects of physically having a pacemaker while pregnant. i have not and will not encounter that situation. i will not be having any more children for my sake, and the sake of a future LQTS patient. i can say, from my experience, that if i had it to do over again, i'm not sure i would have my own children. please know that this is not due to any risk of my safety, but because of the responsibility that i feel, knowing that i willingly gave my child a condition that could cost him his life. i have to admit, that when making the decision to have children or not, it didn't occur to me that it would be so difficult to deal with that fact. according to my genetics counsler, the fact is that any child you have, whether it be 1 child or 21 children, will all have a 50% chance of having LQT. regardless of the stats, i would suggest you really think and pray about the best decision for you. there are many other routes to have children, and plenty of children who are already in this world and need a loving mother. i'm very sorry about the side effects you're experiencing. i hope that you don't have to recieve a pacemaker, but if you do, it really isn't bad at all:) just a day or two in the hospital, a little soreness and aggrivation, and that's it. much better than an ICD.
Hi, thanks for your reply. I found out 2 years ago due to everyone assuming it was my asthma that was causing the problems. Once I mentioned it to the nurse in the asthma clinic, she straight away said it's nothing to do with asthma and got me seen to. Then several weeks later I found out by the hospital what it was. Swimming is what I enjoy the most, I hate the fact I can't do any other sport, when I run I can only run for about 2 minutes. I've got my check up next week up london, so I will see what I get told. The last time I went up there I got told everything I've been experiencing has nothing to do with this condition. Which made no sense, considering how I found out. I'm hoping it is actually my consultant that I will be seeing not one that works for him. I notice that I suffer more in the summer. Luckily in some ways here in England it isn't often that we get real hot weather but nonetheless it makes me not want to do much when I end up with a very strange headache. I'll mention my problems on Friday and see what happens. Thanks again for replying to my message
Thanks bortner for replying : )
I agree with you bortner about what you said to bonnie. All bodies are different. My son loves baseball and he's been playing for 4 years now. Thanks God he hasn't had an episode of syncope out in the field. My son is very active. My son had two episodes of syncope; 1. was going up the stairs, he fainted and landed on his face. He got 3 stitches on his eye lid 2. was in school, he was sitting in his desk and suddenly fainted and fell to the ground. Its so weird that when he is active he ok.
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