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Living With Congenital Heart Defects by Ben's Friends

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Living With Congenital Heart Defects

Migraine with aura after exercising please help!

Hi Folks

I am 30, I had a 3.5cm hole closed using amplatzer almost 4 months ago. I was asymptomatic and very physically active.

I was very happy because everything had been going well. I finish the 3 months of blood thinners prescribed 3 weeks ago. Since last weekend, it has been having really bad episodes of migraine (5 now) after excising.

I though it was sinus infection so I got some antibiotics prescribed but after reading similar experiences and having yet an other episode this morning after playing soccer I think I was wrong.

Has anyone else experienced this? what is the cause of it? is ti dangerous? will have be able to play sports again? How long will this last?

I have very down right now; playing sports is such a important part of my life. Unfortunately today is Saturday so I need to wait until Monday to talk to my cardiologist.

Miagraines with aura are pretty distinctive: see, for example,.https://www.youtube.com/watch?v=fo139jYAFzA

You may find this resource helpful regarding migraines and exercise: http://www.migrainetrust.org/factsheet-exercise-and-migraine-10714

I have not heard of this being related to ASD before. Can you call your GP today to report these symptoms?

Hi

I had exactly this after my ASD closure. I had sporadic migraines before the op. As soon as I stopped taking the blood thinners migrains started especially after exercise. I am 14 months from op on now and I think the migrains stopped about 3 ago. So sorry you are having this but maybe if it is wha I had they will go soon too.

Kate

Hi
I had exactly this after my ASD closure. I had sporadic migraines before the op. As soon as I stopped taking the blood thinners migrains started especially after exercise. I am 14 months from op on now and I think the migrains stopped about 3 ago. So sorry you are having this but maybe if it is wha I had they will go soon too.

Kate

Hi John, my story is almost the same as yours, 3.5 cm ASD fixed with amplatzer at 30 years old. I had many many migraines with aura after closure. I think they are related to your heart, so please take it easy until you see your cardiologist. I wanted to tell you that mine were close to gone by 6 months & now I can exercise better than ever! Hang in there!!

Wow, this is really informative. Thank you, Kate and CSTO!

I had terrible migraines as soon as I had my children 7 and 11 years ago. Never before that. My migraines actually lessoned after ASD but now have returned. I do have some afib and it can cause me to get dizzy after walking faster than i normally do. I am only telling you this because I think if you are having those symptoms you may want to talk to your doctor. I think my migraines with aura come more when I am am stressed.. it seems like it is a spike in my blood pressure. Hopefully, it is just a passing thing for you. I take Maxalt for mine. Good luck!

I work at Microsoft and today I had probably the most important meeting of the year with very important folks and while presenting I had an offset of migraine with aura. I was pretty much presenting half blind, looked annoyed and did not go well. I'm pretty down. This is starting to interfere with my life.

I spoke to the interventionist cardiologist and he does not believe this offset of migraines is related to the closure procedure. I have the feeling that there is not a general consensus on the side effects of the procedure eventhough it just seems too much coincidence that many people experience the same after the asd closure.

He told me to go back to blood thinners and see if that helps. I will also go through some tests to ensure everything is OK :(

I think you let them know what happened. It will make you more real and if anyone knows what migraines are all about they will give you some slack. I get the "no seeing" thing when I'm teaching and it's awful to be teaching second grade from my manual and then not be able to see it. I completely understand. Maybe there is more going on after all. Have you had any other symptoms or been feeling well? Sorry this happened to you. The only thing I can say is the old saying, "Everything happens for a reason" I will add even if it sucks!

PS I am on a full aspirin a day....

I am by all means not saying you have this but I had a double heart cath and found I had a pumping issue with my heart. However, TONS of people have migraines and do not have holes in their heart. ANY stress lately...sounds like it and mine causes a migraine waiting to happen. Try a migraine journal, foods, sleep, stress, can be triggers too.

Just read your post again. That is a really large hole. I think you should push for a double heart cath for sure. I had not symptoms until I already had a pumping issue with a degree of heart faiure and had ALL weird symptoms. Read my post nobody could figure me out at all and kept telling me it's not your heart That is not the case for me. I wish you strength and prayers.

John,

I honestly can relate. I had several holes closed with the amplatzer device when I was 29. They were able to cover all but one small hole. I had this done almost 10 years ago. I still suffer with migraines with aura. The aura is the worst part about my migraines. They are very severe and cause giant holes in my vision. I don't think I get them as often as you. I may get one a month and sometimes I will get the aura and not get the headache.

However, I have always been very active, and now I notice that I suffer with some weird symptoms after I do cardio for a sustained amount of time. I ran a half marathon 2 years after my device was placed and ended up in the hospital with left arm and jaw pain. They had absolutely no explanation for this. Since then, I have tried several times to begin running again, but if I run more than about 2 miles, I end up with headaches and left jaw pain and sometimes left scapular pain. I used to keep the left scapular pain almost all the time, before they fixed my ASD.

They have told me time and time again that it can't be my heart and everything looks fine, but I believe it is my heart. For a long time, I worried about erosion, but now I think my heart muscle gets injured somehow, by the device when my heart rate stays up for long amounts of time. I only get these symptoms when I do certain types of exercise, but I have found that most doctors poopoo what they can't explain. Sorry you are experiencing these things.

Shea

Hi John,
Were you able to get in with your doctor? Migraines are horrible.
Take care, linda

Hi John,

I have the same issue with migraine auras since my PFO closure surgery using the Gore Helex device. But my surgery was done a year ago this month and I've been experiencing migraine auras in addition to constant shortness of breath (even at rest), chest pressure (like a chicken bone stuck) and burning pain in my chest along with fatigue (all of these symptoms started two days after my surgery was done).

I've seen two interventional cardiologists who don't think anything was wrong and have poopooed my concerns too. But because I know something is wrong and can't continue feeling crappy, I've done my own research and have found something very relevant regarding the symptoms of nickel allergy and the device, that is discussed in a journal article from the American College of Cardiology. The reason for concern about a nickel allergy to the device is because the Amplatzer and Gore Helex devices have metal in them called "Nitinol" which is made of 55% Nickel and 45% Titanium (it helps the device keep it's shape). I included the link to the cardiology journal article below if you'd like to read it:

http://content.onlinejacc.org/article.aspx?articleid=1137402

In the article they discuss in detail about the symptoms of migraine headaches with aura and abbreviate it as "MHA". It seems the patients who were seen in this study, those that started to have migraine headaches with aura (MHA) after ASD/PFO device closure (who didn't have migraine auras before) have a high probability of a nickel allergy to the device, and patients with a combination of migraine headaches with aura (MHA) and chest pains have an extremely high probability of nickel allergy to the device.

Just some interesting info to think about if your symptoms continue. And since mine have continued for a year since my PFO device closure, I'm now seeing new doctors to get tested for a nickel allergy; and if it turns out I am allergic to the device, I'm probably going to go to the UCLA Heart Clinic or the Cleveland Clinic to have the device removed.

I hope this info helps. Good luck on your journey!

~ Katherine

Shea, that's a really interesting point. I feel like my heart muscle gets sore after exercise as well. Kind of a exercise hangover. My docs keep emphasizing that I should exercise - I try to patiently explain that everytime I do anything that is more than a mile or two of walking that my chest will be killing me the next day. I wonder if my device irritates my heart more when I do cardio exercising. My docs say it is because I am out of shape. But if I was out of shape how could I manage to do 2 miles of cardio? Also I am a former runner so I find this whole argument to be ridiculous.

But I love your quote "most doctors poopoo what they can't explain."

so for now I exercise minimally and just try to watch my diet carefully.

John - I am really sorry to hear about your episode at work. I work in the IT industry and I try to not talk about my medical condition much. Our jobs are very competitive and unfortunately if you mention you have health problems it can really hold back your career. The one solution I have found is telecommuting which enables me to work even when my health is really bothering me.

I had headaches for awhile, but thankfully I am not having those right now.

hope your migraines improve soon!! Have you tried imitrex or maxalt?

best wishes,

Jennifer

I am also having many issues after my ASD closure. I found out after Amplatzer device that I have nickel allergy, which is proposed cause of all my unexplainable symptoms. My cardiologist is awesome and supportive. I am 7 months out from closure and better than first 3 months, but still don’t feel normal. I have many weird symptoms and specifically odd chest pains and shortness of breath at rest, especially after exercise. I also get more migraines although they have decreased the past few months. They were many times associated with exercise. My cardiologist wants me to have it removed as he believes it is causing all the problems. Best of luck and keep being your own advocate.

Hi, i have the same problem, been getting the migraine with aura for 7 years now. Once every 4-6 weeks. I take 50 mg aspirin these days. I used to take a 100 , but am now down to 50 mg. If i stop the aspirin i get them daily. I know how you feel , they ruin your day and spoil the mood. Beta blockers help reduce them to once in 2 months but they have side effects too. I personally think it has something to do with the device. Check if you have a nickel allergy, theres supposed to be a relation to that. THey usually occur when the heart rate is up, eg, running or heavy exercising, or even drinking a beer, which increases heart rate. My guess is that anything that increases the heart rate( Exercise, running, beer etc) causes a nickel release that triggers the migraine. SOmetimes the nickel reaction is delayed and you get it the next day. One never gets it at night

Hey, katherine i have the same problem . I am very sure that the cause of the migraine is the device and the nickel in it. I am considering removing it too, been getting migraines for 7 years now. Started 3 days post surgery. Am on 50 mg aspirin daily , if i stop i get migraines daily. I too am considering removing the device and putting tissue in its place. Have you done the same or are still planning to ? please let me know , thanks !

Hi, i have the same problem, been getting the migraine with aura for 7 years now. Once every 4-6 weeks. I take 50 mg aspirin these days. I used to take a 100 , but am now down to 50 mg. If i stop the aspirin i get them daily. I know how you feel , they ruin your day and spoil the mood. Beta blockers help reduce them to once in 2 months but they have side effects too. I personally think it has something to do with the device. Check if you have a nickel allergy, theres supposed to be a relation to that. THey usually occur when the heart rate is up, eg, running or heavy exercising, or even drinking a beer, which increases heart rate. My guess is that anything that increases the heart rate( Exercise, running, beer etc) causes a nickel release that triggers the migraine. Sometimes the nickel reaction is delayed and you get it the next day. One never gets it at night