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Post  Enigma Tue Jan 04, 2011 7:57 am

PFO closure in the heart. This is where they beleive that the small hole in the heart leads to migraine and if it is closed then migraines stop or are reduced. Has anyone tried this? There is a clinical trial here and I'm looking into seeing if I qualify.
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Post  AngelTree Tue Jan 04, 2011 8:08 am

Hi,

I am 31 yrs. old and was originally diagnosed with a PFO and complicated migraines. When I asked my doctors to look into it further I found out I actually have an ASD (atrial septal defect), which is a much larger PFO.

So I had it repaired with a cath. and was put on plavix and aspirin for 6 months. For six months I got some mild auras a few times a month, but basically was cured of my migraines. Unfortunately, then they came back. Now they are a bit different (does anyone else's aura change randomly?), but also unfortunately just as bad.

When I went back to my migraine specialist (who also specializes in strokes), he told me that this is quite common, and that many people who had their PFOs closed do really well for six months, and then find that their body adjusts and their migraines come back.

On an up side I believe PFOs are risks in and of themselves, so I'm glad you got it taken care of. I really hope that you have a better outcome (migraine wise) than I did.

By the way, I do find that aspirin and or plavix does tend to prevent my migraine so I'm still on aspirin as a bloodthinner at the moment.

Angel

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Post  pilot57 Tue Jan 04, 2011 8:22 am

I, too, have a large PFO, along with chronic daily migraines for 5 years. Nothing has relieved the pain.

My doctor was hoping that I could participated in a study conducted at the University where she practices, but so far I have not heard anything. She did say that in her experience (she is 55-60 and a top neuro), PFO people are just different. They don't respond to meds and treatments like non-PFO patients.

I have exhausted all other med and treatment options. I hope more of these studies show PFO closure helps.

Your experience is interesting, Angel. I hope that you feel better soon. Thanks for sharing.

Ann

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Post  Enigma Tue Jan 04, 2011 8:41 am



I don't know why, but I just did a phone interview and I was told I do not qualify for the study. Maybe I'm too far gone or too severe. My bubble of hope is burst.

Nice to hear what happened to you Angel. I'm curious to hear other stories of success, partial success, or not.
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Post  dcook60 Tue Jan 04, 2011 8:46 am

here's what i know about PFO: i have one, diagnosed 3 years ago, but on further testing, it was determined to be tiny. best to leave it alone, said cardiologist.

the people who have been relieved of their migraines by fixing the PFO nearly always have AURA. i've never had an aura.

it was just another hopeful bubble that burst, for me. but of course, i am very glad that mine will likely never cause me heart problems. dianne
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Post  Enigma Tue Jan 04, 2011 8:59 am


If anyone else is interested in Canada or Germany, it is http://www.primatrial.com/content/patient-information.aspx


In the US
http://premiumtrial.com/content/find-a-physician.aspx



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Post  jwar Tue Jan 04, 2011 10:50 am

My friend's 15 year old daughter was having terrible migraines with intense auras. They did testing and diagnosed her with having a PFO. They scheduled and performed the heart surgery, only to discover that she had no PFO at all, nor any other holes or problems with her heart. Just be careful.

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Post  cupatea Tue Jan 04, 2011 10:33 pm

I was sent by my cardiologist (after being diagnosed with a PFO) up to UCLA for a study they were conducting up there.
The cardiologist there was great, but it turned out that I'm not a candidate as I have chronic daily headaches as well as migraine.
Quite a shame, as I, like many others, had hope for this closure. Now I'm told I'll have to have a few TIA's or a stroke before they'll aggressively treat the pfo.
T
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Post  pilot57 Wed Jan 05, 2011 7:49 am

I was disqualified, too, for the study listed above because of my chronic daily migraines. Seems a shame as we could really use some relief.

Ann

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Post  Enigma Wed Jan 05, 2011 8:05 am

I did further online surfing and found out that I was disqualified for saying I had 15 migraines a month and they accept 14 or less. Because she asked for only my first name and a phone number, I reentered my application online with another phone number and posted that I had less migraines.

Lets see if I get a call.

Still it is a trial and half the participants get the real operation and half are fake and after a year you find out which one you are. However, I would like to know if I have a hole in my heart so I can proceed further. For me it is some glimmer of hope that I didn't have last week.

I have a few phone numbers so I will keep trying to get that phone call.
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Post  Cathy Thu Jan 06, 2011 11:43 am

I tried to get in one of those studies years ago but also had migraines too frequently.

About a year ago, I had to have an echocardiogram and they told me it would show any holes. I was really hoping I would have one but no, the blood flow was perfect except for a leaky valve. So at least I know that's not the cause of the migraines but still they continue.

DCook - I love that picture!!! It's what I feel like most days, like an ax is in the middle of my head but I'm smiling and saying I'm fine.

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Post  in the dark Thu Jan 06, 2011 11:12 pm

I had a PFO closure in 2008 shortly after being diagnosed with (sudden onset) complex migraine with aura - I understood my PFO was large - perhaps consequence much diving in New Zealand (?) - procedure was simple; with catheter. My migraines severely [i]worsened[/i] as a result, which I was told by my neurologist and cardiologist occasionally/ rarely occurs. I would probably take the opportunity to do it again however, as I understand it reduces one's risk for stroke, etc. - and in the U.S. one needs to have a cardio 'event' or other 'reason' to justify support of insurance.

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Post  in the dark Thu Jan 06, 2011 11:19 pm

Let me clarify - that I would 'take the risk' again, of having the surgery with the hope of curing the migraine - together with its accompanying benefit of mitigating high risk for stroke. Had I known the surgery would result in this worsened migraine condition - I would not have elected to have the PFO closure - (but rather peppered my eggs with aspirin and plavix daily).

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Post  Petzi Thu Jan 06, 2011 11:42 pm

When I first heard about this I went to discuss this with my GP. She literary fell on her knees and begged me not to tamper with this no matter what. The message was that you just don’t' want to mess with your heart. She also said that the fact that some obscure doc in rural UK performs this type of surgery and not a well known heart surgeon in a large teaching hospital in London gets her alarm bells ringing big time. Put me off for good.

P.
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Post  in the dark Thu Jan 06, 2011 11:58 pm

Thanks - I so appreciated your post as I recalled one of my docs at (large teaching hospital in Northern California where my PFO was performed) saying: "Beware of doctors practicing in outlying areas....." - but that comment was made in reference to months of misdiagnosis of complex migraine by a number of primary care docs and even neurologists who repetitively wanted to call it conversion disorder or something else, etc as they couldn't verify a stroke .. and weren't familiar with the variants - but I am getting off the PFO subject. (It is so helpful/ supportive to read the stories of others' when I am feeling isolated)

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Post  Petzi Fri Jan 07, 2011 12:13 am

Tried Plavix to see if it affects my migraines. Didn't help one bit, but made the blood vessels in my eyeballs leak blood into the white of my eyes. All the white in my eyes was bright red for a few days. Looked like something out of a horror movie. So not a good look. affraid

P.
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Post  in the dark Fri Jan 07, 2011 12:19 am

Euew .. I didn't realize folks were using it as a treatment approach to migraine ... Plavix was prescribed, together with aspirin, for me after the PFO closure 2 years ago, and I have continued to take it as I am also on estrogen which presents a risk. Now I am curious about the plavix - migraine relationship?

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Post  Petzi Fri Jan 07, 2011 12:29 am

It probably isn’t' officially. Was just one of my "experimental" approaches. I have worn down my GP with my constant pestering and so she was happy to prescribe it for a while. As one of the other forum members once put it eating cat poo looks appealing if there might be a chance of getting rid of headaches. cat

P.
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Post  Enigma Sat Jan 08, 2011 1:58 pm

I've been accepted into the first steps of the Trial. I am awaiting a phone call from the University for the next step.

I am nervous, but I can step out at anytime. This is where I sit at this point in my migraine life. My migraines are getting progressively worse. I''m way past holistic and natropathic medication and the presciption pills gamut is not working. Everything I've tried thus far is not working. Pain meds don't barely touch it anymore and I don't want to advance to the deep narcotics. I am already almost at a migraine a day and I am scared for my future and my ability to continue with my career and my ability to live my life.

I wish myself dead more times than I like to admit, but I'm not suicide. The risks I have yet to assess as I move forward. From what I have read on Migraine Central's site about a past clinical trial that has closed is that there was a reduction of 37%. To me that is huge!

When I get the call, I will step forward. I am scared, but I can't keep deteriorating like this.
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Post  Guest Sat Jan 08, 2011 4:54 pm

Plavix isn't the greatest thing to have to take everyday--but if I don't take mine every day, I'll be taking a dirt nap much sooner than later.

One doctor wanted me to stop it for 5 days for an upper GI endoscopy, and I ended up having a stroke. Ugh.

Plavix & aspirin help keep clotting at a minimum. It has helped my headaches but it does make you feel tired.

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Post  Petzi Sat Jan 08, 2011 11:05 pm

Oh dear Porsche Fan,

you seem to have quite some health troubles. I hope everything is under control and ticking along nicely.

Love

P.
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Post  Enigma Sun Jan 09, 2011 6:09 pm

Well, I must say I feel real embarrased and rather small, as at the end of my thread some of you hi-jack it in a new direction and ignore my last post. Is this how you treat new people who don't interest you? It's one thing to not respond at all because that would be polite, but to just ignore the host of the thread who is looking for answers, and to go in your own private direction is rather inappropriate.

I was getting valuable feedback from many angles for a big decision in my life and this is important to me. I put my heart on my sleeve as I confessed my fear for all to see. Good to know more about Plavix, Porche, and glad to know that Porche Fan is so important to you in this thread, Petzi. How heartwarming. No comment to PFO and what I have said.

He is deserving of love, of course, but inappropriate as I feel like a piece of dirt right now.

Love Enigma
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Post  Guest Sun Jan 09, 2011 7:35 pm

Enigma,

I read your post when you first put it up, and thought you had more than adequate replies. I didn't mean to make you upset.

I'll give you my feelings regarding PFO and migraine.

This is typically how this goes--the MIST trial is treated as old news in the cardiology world and has not shown a dramatic change in migraine with people with both PFO and aura, however some may see an improvement. Cardiologists got interested in PFOs since the early 2000's for migraine. There has not been much shown with treating PFO's--which in the vast amount of cases is treated via a heart catherization with deployment of a device that is like an umbrella between the chambers of the heart.

PFO closure in heart HEART_PFOcombo2

Link for info

http://my.clevelandclinic.org/heart/disorders/congenital/pfo.aspx

In 2004, my cardiologist did a PFO evaluation after a heart catheterization since I had a complaint of migraines. Since I was in for heart trouble, they double checked for PFO. The cath was negative for PFO, and the echocardiogram with bubble study was negative.

PFOs are mainly closed due to stroke risk as a primary treatment. It is not considered first line treatment for migraine. Most migraineurs understandably would like to find a problem--I think PFO has become a holy grail for a lot of migraineurs. The test for it may show some info, just like a high-resolution brain MR may show something. A migrainuer may have a PFO but it may not be contributing in any way to their migraines.

Just like having an MR may show a tumor--but the tumor may not be a cause or have any correlation with migraine.

I had another catheterization done and one of the other patients in the prep area had a PFO. I was quite interested in this. He had a stroke, and very high blood pressure. I asked him if he ever had headaches or migraines and he said no. I was amazed.

The bubble study is quite easy. Saline bubbles are pumped via a port and visualized by the echocardiogram. This isn't a big deal--easy test. The echo will pick up if there is passage of saline bubbles between the septum--this can indicate a PFO. If not, chances are you do not have a PFO. If you do and have symptoms or risk factors of stroke, then it's up to the docs what to do. Study data is not the best way to get treated IMO for any type of disease. The goal is data, not treatment.

And yes, Plavix plays a key role as anti-platelet to prevent stroke. It also helps to keep platelets from sticking together making clots--which are not only bad for the cardiovascular system, but brain as well. I don't know if you were on the old Rhonda's site, but that holds a vast amount of information too regarding PFO and other migraineur's experiences.

I've been fighting migraines since I was in early high school. Then they got really, really ugly about 10 years ago. Then they progressed into daily life. Constantly. Over the years, I have been on just about every treatment and gone through every diagnostic possible. I have a migraineous headache daily, and it is only tollerable now due to about 16 meds a day, and a lot of cardiovascular treatment. Each person's migraine problem is different, and many times there is no pinpoint.

I know the pressure of migraine, and what it does to jobs, education, relationships, etc. I understand your frustration with migraine. If you wanted some attention, you got it from me. If you have any questions, please feel free to fire away. I'm sorry if you don't like my answer, or my writing, or if my tone seems grumpy--it's not meant to be.

Best,
Porsche Fan

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Post  Enigma Mon Jan 10, 2011 8:09 am

Thank you for your reply, Porche Fan. I read it like a sponge a few times. I've been scanning the internet for information, but what I crave is personal input like yours. I don't know of Rhonda's site and googled it and can't find it.

I'm sorry if I came off childish. I've struggled since I was a kid and now I'm in my forties, and these last 7 years it's getting worse to almost daily. I felt...well, I expressed how I felt. Please allow me to put this behind us.

If you did have the whole in your heart, would you go through with it?
Have you ever had a stroke? Why did they decide to give you Plavix or was that part of a combined package regime?

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Post  Petzi Mon Jan 10, 2011 9:08 am

Ooops, sorry Enigma,

I only just realized that I have upset you. Embarassed Apologies! I pop into the forum randomly during the day while working and often in the rush I see that there is a new post and read the latest one. I simply missed yours and responded to Porsche Fan.

As I said in a previous post I would be very careful when considering this type of surgery to treat migraines. I know how desperate you can get with these darn migraines. I have been there myself numerous times. In order to get rid of migraines you might end up creating an even bigger one if something goes wrong and the surgeon hasn’t slept well the night before. It is after all the heart we are talking about.

I underwent migraine surgery last summer. I had the frowning muscle removed and the arteries on my temples cauterized. I was desperate and just went for it. Success was moderate. I went from daily migraines to one attack a week (lasting 3 days), but I was not able to reduce the dosage of my preventatives. I had better results in the past with medication than with the surgery. I would not do it again. Healing took ages and I still have some numbness in the face. It will probably take a full year before I am back to normal.

Don’t jump into it as a guinea pig before more research has been done and it has entered the mainstream.

Love

P.

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