I have been on several medical web sites that describe PFO conditions as asymptomatic. Does anyone else have symptoms? Mine include: the MIGRAINE (of course) dizziness, feelings of impending doom and feelings of passing out after those feelings, Extreme fatigue, cold hands and feet, inability to exercise, palpations, flashes of light, and tinnitus. I was told by a doctor that migraines make so much money for the medicine companies that having everyone rush to get there PFO's fixed would be bad business so the "connection" is "limited" Does anyone else have similar problems with symptoms and lack of support for treatment? I have read that I will not be able to get closure on my PFO because I haven't stroked yet. Seriously?
I'll start by saying this - other than what I just Googled a few minutes ago, I know nothing about PFO. Though the symptoms I found listed didn't seem to match yours.
However, the symptoms you have do seem to match many of the symptoms I have at different times of the year, and so far, I've been able to link them back to stress/anxiety. Stress pretty much owns me. I had a period where I had blobs of light appear before my eyes - like a flash bulb had gone off. I've had feelings of weakness, loss of balance, vertigo, feeling like I was going to pass out, loss of appetite, nausea. Just a few weeks ago I was having increasing pains in my stomach and abdomen, a change in bowel habits and ended up having an ultrasound, abdominal CT scan and esophagogastroduodenoscopy (EGD), all to find that everything was more or less normal. And I've had PVC's in varying intensity (up to 10,000 in a day) for the last decade.
I'm no doctor, but reading your list of symptoms looked like I was reading something I'd written myself.
Have you been diagnosed as having PFO?
I know that nothing is more maddening than feeling like you have a potentially deadly condition but nobody seems to believe you. So I hope you can get yourself tested (sounds like an echo would confirm the diagnosis) to your satisfaction, then find a path that will get you feeling better again.
Thanks for your reply. It took me a long time to find the right website for me to talk about these things with other people. I had a bubble study done in JUNE 08 and the bubbles showed up late which I was told by my doc frequently suggests a PFO (hole) in the heart but to be 100% sure we have to do a TEE test which I will do next week on the 13th. I feel that it is there because I made the connection for myself between PFO and Migraines and that is what really got me started on my journey. I know that everyone is born with a PFO because in the womb we need all the blood and circulation we can get but for some people the whole does not close up in the first year of life like it is suppose to. Instead...in most of us, it goes unnoticed until later in life. I have always had the migraines and my face would always get beat red whenever i exerted myself physically and that was about all I noticed as a kid. In my late 20's (27-29) I begin to experience this slew of other problems that just appeared to come about one day. Now I am completely certain that the hole has either gotten bigger or my vessels cannot accommodate the strain of proper circulation any longer. A PFO is not really a hole ,,,it is more like a flap between the chambers of the heart. We are supposed to have one side with clean, oxygenated, blood and the other side carries the dirty blood and sends it to be cleaned. With this "Flap",,,sometimes the "dirty" blood mixes in with the clean blood and then is sent to all of our lovely organs. It is also a potential passageway for clots and therefore people with PFO are usually at risk for stroke, heart attack and pulmonary embolisms. SCARY HUH? If you have these symptoms I recommend seeing a good Cardiologist and Neurologist. Have you ever felt like you could just do and be more than what you are or what is happening to you? I feel like those who picture daily what they want their life to be like will eventually experience it!!! You said you have had many PVC's. I have never heard of this before until I read your post so CHEERS for sharing! I did read about it though and it appears that I do experience that on a daily basis. I will let you know how my test goes on Tuesday and if I don't have a hole,,,then....I just don't know where else to look. I hope you find peace and become more and more anxiety free as time goes on. :)
I had a PFO closed in 2007 after suffering from a stroke at 28. I had so many problems before they fixed it. I suffered from migraines, lightheadedness, dizziness, fatigue, and palpatations. I had a hard time in crowds because if I got hot i felt like I would pass out. I had gone to several docs and none of them could tell me what was wrong. When I stroked they decided to look at my heart. They did a x-ray, and echo and everything showed up ok. Finally they did a TEE probe. That's pretty much the best way for them to see it. Because I had stroked they decided to fix it. But there are problems that occur from repairing one. I didn't know that till after the fact!!! But I too was told that it was stress and anxiety and such. The best advice is that you know your body and when something is wrong. If you feel like there is a PFO problem go see a cardiologist and request the probe. And if your doc said that med companies make too much money from migraines, I would find a different doc. Nobody should have to love on pain, no matter the cost. Keeping going to doctors till you find an answer. Good luck.
Wow! I can relate to the crowd thing. I went to concert and thought I was literally going to die in the mass of people and no one would know. Anyway...I have a TEE test scheduled for the next week but I am positive that I have a hole. Do you feel better now after having the surgery or would you prefer to not have had it all. Please give it to me straight!!!:) The doc i spoke with that said that was a friend and he meant that because of the recent correlation between migraine and PFO's it would turn big Pharms panties in a wad and Insurance companies would know be paying for many surgeries vs. medications and this is why most cardiologist's won't close the hole unless you have stroked. So what are the problems that occurred for you after closure? You don't have to answer that if you do not feel comfortable. I totally understand and respect that.
It will also depend on how severe the hole is whether they will close it. Mine would "flap" one very wide even while I was under sedation. I also have a blood clotting disorder that makes my blood clot rapidly. Ask them to check you for protein defienceies and other clotting problems. That will also help to determine whether they close it. I would be persistent or go to a cardio surgeon on your own, especially one that deals with PFO. Not all of them do. As far as if I'm glad they closed it, yes I am. I had 1 stroke and 6 mini strokes. The PFO was allowing blood clots into my brain. So if they didn't close it then I probably wouldn't have lived long. But don't believe everything you read on the internet about PFO and repairing them. Some of it is ****. Within 6 hours after they closed it I had the worse migraine of my life. It's a side effect of the closure. *****!!! i felt good for about 4 months after the surgery. Then things went down hill. I now have 3 leaky valves, irregular heartbeat, dizziness, fatigue, fainting, and more problems with my heart. After the surgery I went to see another specialist to see how it was doing and was then informed of why they try to wait fix it. It can and does cause some complications afterwards for alot of patients. Some people have no after effects. But most people do. So it's kind of a catch 22. Die of stroke or heart attack or fix it and develop more problems. And I still have bad migraines. They didn't go away like the docs said it would. I have been through a stroke and don't want to do that again, so I am glad they fixed it. I hate how it is now though. If you have any questions feel free to ask. I know alot about PFOs and such. I talked to several docs and specialist about it and did my research. Stroke is not the only thing that can happen if you do not get it fixed. The probe doesn't take long and they can see alot. They should have answers for you when you wake up afterwards.
You have really been through so much! I am glad you are here talking about it with me. I am really nervous as to the outcome on Tuesday. I will be relieved if I have a hole so that I finally know what is wrong but at the same time I will be frustrated about the decisions I have to make. I am sorry you had complications after the closure. You said you haven't had any more strokes since the closure...what other negative symptoms have you developed due to closure. What is the name of the implant that you and your doctor chose? I have also heard of the peoples migraines not going away after closure but I have also heard of many that do. I am not so much concerned about the migraines anymore. Don't get me wrong, I wouldn't wish that pain on my worst enemy but, I do not want to stroke either. I have read alot about strokes and the signs and symptoms are. Can you describe your stroke and any TIA"s that you have experienced. I believe I have already 3 or 4 TIA"s but I will have to wait for my MRI on the 16th to see if that is what they were. Thanks again for sharing,,Do you know of any other websites where people talk seriously about PFO and other heart related conditions?
I was just diagnose with pfo. And I have the same symptoms! My doctor told me there are no symptoms. So I'm having like a million and 8 test done! And its all for noghting? The feelings are so hard to describe. But that's exactly it! I'm having my hole fixed as soon as I get insurance. I always Thought the feeling I got were normal. So I never even thought something wrong with me. I can't wait to get it fixed so I can finally feel safe on my own. Iv actually passed out twice within a month. 3 times in the same night actually. Its so scary! I hate going out on my own in fear I'm gonna pass out and hit my head or something.
I have a PFO and complex migraines. I also have dysautonomia. I have been to more doctors than I can count and had more procedure done than you can imagine. I have had a pacemaker put in 2 times and taken out...all this year! Thought that would help my problems. I have had electrocardio ablations because I have SVT---high heart rates as well as low. I have been told in order to fix this PFO i will have to have had at least 2 strokes first...the tia's aren't enough...I guess you have to be permanently disabled more than what I already am...I am trying to avoid all that by seeking help but apparently you can't find that help anywhere! It is frustrating so I sympathize with you all who are trying. My headaches are so bad that when I go to a dr., they get confused at first sight because I am symptomatic of a massive stroke. I become totally paralysed on one side of my body and sometimes they are so bad I can't even carry on a coherent conversation. My heart goes out to all of you who are seeking medical help for this issue and having a hard time getting progress. I am right there with you!
I had a major stroke at age 48. I had no risk factors,have been extremely healthy and physically fit. I found out I had a PTO> I have suffered with migranes (migraines) for 20 years. I have probably 4 or 5 a year. A neurologist I had ,who also had a stroke recommended meds such as ZOCOR ands ASPERIN 325milligrams) and said not to get the operation to close the flap because after 10or 15 years ,the umbrella they seal it down with ages and malfunctions and actually causes blood clots. NO THANKS! I will take blood thinners instead.
Found out today I have a PFO. I have been having silent migraines for 6 years with flashing lights, no headache aftewards. The last two were different. I was very confused and the last one (while I was pregnant) left me with a tia symptom, i was unable to speak, communicate for about 1-2 hours. I had an MRI, an an EEG that were normal so today they did a TEE cardiac echo and they found the PFO. They called it "moderate" in size and my neuro sugeted it be fixed. After reading these post I am a little scared that it may put me at risk for clots. If seems like someting in your heart just sitting there could form clot around it. Plus I have had a hole all my life (28 years). Just a lot to think about. I don't want to have a Real stroke or a heart attack! Symptoms for me were the loss of speach and ability to communicate for 1-2 hours, I have always been chronically fatigued, I have passed out maybe 3 times in my life, my hands and feet are always cold. I do have anxiety and feel palpitations sometimes (usually when I drink too much mt. dew!)
I just got diagnosed with a PFO myself last week and I have exactly the same symptoms as you!! I was also told the same thing.......no closure because of no stroke even though I have 2 "spots" on my brain and a history of 3 pulmonary embolisms! what is the medical world coming to?? or should I say "the insurance world"!!
I am 55 years old and was diagnosed with migraine aura (no headache) a year ago. I had the migraine symtoms (symptoms) for 3 years before finally finding a neurologist that knew what she was doing. It was a relief to finally know that my symptoms had a name and that I was not crazy. My neurologist recommended a bubble study 6 months ago because of the severity of my symtoms (symptoms). WOW! She found that I do have a PFO and that on a scale of 1-5 mine is a 5. We are in the process of trying to get my insurance company to cover the procedure to close it. Nothing yet. Until 4 years ago I was perfectly healthy with no problems at all. All of a sudden I started to experience symtoms (symptoms) of dizziness, lightheaded, tingling in my hands and feet, feeling like I was going to faint, pressure in my head, blurred vision, inability to concentrate. I had these feeling daily. Sometimes for 30-45 minutes sometimes throughout the entire day. My neurologist prescribed Lamictal about 8 months ago. It did help to control my symtoms (symptoms) for a while but for the last two weeks my symtoms (symptoms) have worsened. In addition to the the symtoms (symptoms) previously listed I now have anxiety, feelings of doom, vertigo(everyday) my muscles feel tense, palpitations, and flushing. I am convinced that my symtoms (symptoms) are a result of the PFO. I too have read that there are no symtoms (symptoms) of a PFO. That is bull!!
It is such a relief to know that others experience like symptoms.
I was diagnosed with a PFO about 5 years ago. My symtoms (symptoms) are very similar to the once listed here (lightheadedness, feeling like I'm going to faint, can't get a deep breath). I do also think I am stressed (teacher, 2 kids under 2, etc.) During the bubble test to see if I had a PFO the tech told me several times to strain like I was having a bowel movement (I think this might push blood/bubble through the chamber). Anyway, the other day I was having a bowel movement and my symptoms came on really strongly. I felt the impending doom/passing out/lightheaded feeling. I also woke up from a nap a couple of weeks ago and felt like I was about to die. To me it kind of just feels like my trying to stop (sound crazy but just wanted to share here). Anyway, my doctor friend at Duke told me when I was diagnosed that my stroke risk is slightly increased having a PFO but that it is a very small increase. He said if his wife had it he would not be concerned about her getting the procedure (I should add that he loves his wife very much.) Just wanted to share.
This exact same thing happens to me when i have a bowel or put any pressure to the heart.. i had this for years and been to a cardio for this problem as well as having symptoms like others who have pfo. Finally after all theses yrs they detected the pfo which went undetected in the past. Now i know this is really caused from the pfo. And its just getting worse as i get older i am now 31. Im waiting on the doctor to call me back to let me kno what hes gonna do. And im hoping he doesnt say blood thinners and goes the catheter route to close it up.. i can relate to many of you and the daily struggle we have to deal with. Glad i found your article!
I have those exact symptoms! When i would describe this to ppl they look at me like im nuts like a hyochindriac and im not! This is exactly how i feel like and you all on here understand not like the others who are not going thru this.
I am with u 100% maggie! I feel those symtoms (symptoms) as well.. after feeling theses symptoms for 5 yrs and getting worse i decided to go back to the cardio and insist something is nor right my symptoms we getting worse and newer symptoms developed.... they finally found the pfo! Although i had a sonogram of the heart the never did a bubble test until now and voila! There it was! The dr said these can go undetected for yrs.... so anywhoo, the pfo is medium size, i went for a stress test Tuesday Oct. 2nd , now im must waiting for the doctor to retuen my call and see what the next step is... stay well :)
I have just took my daughter in to see her Ped. she is 16. She has had symptoms that have gone undiagnosed, misunderstood.
Symptoms: She is standing up and dizzy spells with a quick black outs. She has fell at her new job and has hit her head. She struggles to catch her breath most times. She sees spots and lights, blurred vision. Fatigued, lack of energy. Palpatations (almost feels like an out of control panic attack; can't catch breath), headaches some of them severe like migraines.
They did a EKG on her, this showed nothing, I asked for a Bubble Echo. It was disregarded.
I need help this has been going on for 2 years, been to the doctor a ton of times...
My younger sister (19) has suffered from chronic migraines almost her entire life. She has blurred vision, feels lightheaded, feels like she can't breath with panic attacks, cold hands and feet, fatigue, and palpitations. She has had every single test run for her migraines: MRI, cat scan, blood work, and now she is under going rounds of Botox in hopes of controlling her pain and they keep telling her she needs coping skills and to seek therapy. I have decided on my own to do some research to see if there's something the doctors are missing (my stepsister found out the answer to her disease through research so I figured why not). She seems to have all of the symptoms being described. Any advice?
This is to all on this forum since I started the initial post. I still have the PFO. They say it is clinically insignificant. I have since just tried to ignore or live through my symptoms if you will and try to get on with my life. It is now June 2014 and I am a cardiac nurse in the cardiac intensive care unit. I was connected to a specific type of cardiologist who is called and electrophysiologist and he just diagnosed me this month with POTS (postural orthostatic tachycardia) and/or IST (inappropriate sinus tachycardia) I blogged this same info on another forum so I will try not make it too redundant. Long story short. This is an neurological problem in which the ANS (autonomic nervous system) is off kilter due to a viral illness, PTSD or some other trauma or injury. Mine is most likely related to a viral illness with the addition of PTSD. Anyway,,, the low BP an increased HR are symptoms of this dysregulation and the doctor prescribed a high intensity anaerobic exercise 7 days a week. The goal is to fight fire with fire. I laughed at him because I said, "You know I'm here because I can't exercise right?!! He laughed too and said in order to fix it it have to exercise this way to change my metabolism and re-regulate the ANS. It's like putting the chain back on a bike. You just gotta get it back on track. What does this have to do with a PFO. Maybe nothing, and maybe everything. This POTS/IST syndrome or dysautonomia if you will is poorly researched and there is not enough data to suggest yet that PFO plays a role in this condition. I did feel obligated to update everyone as I am the original poster for this discussion. GOOD LUCK TO YOU ALL! NEVER GIVE UP!
I'm 47 years old. I had 2 small strokes 2 months ago and was diagnosed with a PFO. I am an active person but about a year ago or so I stopped jogging because I couldn't catch my breath. My headaches got worse. Energy levels decreased and I was experiencing palpitations and aches in my left arm and hand.
It's been a real head trip... I'm convinced if I don't have the PFO closed I will have a massive stroke and die. Plus I have another hole in my heart (VSD) and I feel that my heart is under a lot of stress.
I am having a procedure done September 19th. Doctors are implanting a amplatzer accluder to close the valve.
Has anyone else had this procedure? How long ago did you have the procedure? How are you now? I will share my experiences as things progress
I have had your exact same symptoms for years. Finally, a nurse practitioner put the symptoms together and decided to order an echo and I also have been diagnosed with PFO. I have had off and on extreme exhaustion, palpitations, weakness, near blackouts, crazy migraines with aura, etc. for years. Now the palpitations are so bad that they make me cough. The way she explained it to me, is that when the arrhythmias are bad, that cough is my body's way of resetting my heart I'm still waiting for a call from the cardiologist to find out if they will repair it or just try blood thinners. I am 48 years old now and with the symptoms I've fought my whole life, I am amazed that they just finally found this. Apparently, if you suffer migraines, you should be tested for PFO in your 20's, especially migraines with aura. Yes, there are definitely symptoms sometimes. Not always, but yes, don't let anyone tell you that there aren't symptoms. I would go as far as to say that as we age, the symptoms seem to get worse. They sure have gotten a whole lot worse for me.
I had my stroke at 35, in 2003. I had always had headaches while growing up. Not daily but often. And oddly nose bleeds as a kid too. The neurological doctor who gave me 8 months of tests, was told by a team meeting of doctors to run the bubble test, and I was diagnosed with PFO. And the Dr. Sent me to get it repaired. But insurance sent me to diff. Hospital & Of course by then I had mostly recouped from my stroke, the cardio. Dr. said I had no symptoms of stroke & that was the qualifying thing to have the repair. So I live with my unrepaierd PFO. Sill experience headache, heart palpitations, flushed face, vision interference. The stroke left me with some nerve twitches. I no longer have insurance. So I don't get medical attention. Am happy to find friends among you.
Hi, where are you ladies & gentleman from 2010 and previous posts. I was recently told aout my PFO during an emergency room visit and my life has been flipped upside down . I have all the symptoms except the migraines but the threat of stroke and death is just as painful. I have kids and truly want to be here for my family. All of you gave useful information and I just want to feel the way I felt before the doctors found it. I've had to stop everything and I have added vitamins to my diet. Im scared of closing it and I don't have insurance. Even with insurance things seem to be a struggle . Can we just ignore this and it goes away or are we just doomed forever.....tears ! Tommy from Memphis Tennessee 901-487-3522
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