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PFO closure in heart

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Enigma
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Post  Enigma Mon Jan 10, 2011 12:26 pm

My apologies too, Petzi. I feel like a big jerk.

Was the operation on your muscles or nerves? Did it do anything lasting at all?
Have you ever been tested under an EKG or MRI or such?

Thank you for the warning and your experiences. Well noted
You see, I have never even been to a specialist. The most I've been tested for is a few blood tests. I see this as an oportunity for someone to finally listen to me, take me seriously and have a real good look at me for once. I am told that I can step out at any time.

Thanks again.

Enigma
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Post  Guest Mon Jan 10, 2011 1:52 pm

Enigma,

No problem! Ok, I can get very technical about heart stuff. Just about every member of my family has been affected by heart problems. Myself, many. I started having heart problems around age 12 and I'm 34 now.

I've been through just about every invasive and non-invasive cardiac test. I've had 10 heart catheterizations, 1 electrophysiology study (measures electrical system of the heart) and one brain angio. I've had a few cardiac MRIs, countless nuclear stress tests as well as EKGs and echocardiograms. I've had tons and tons of bloodwork. Add insult to injury, i have a tumor that's about 6mm sitting underneath my brain on my pituitary. Many, many CTs and MRIs on that one.

I've had heart monitors implanted in my chest and currently have a pacemaker to keep my heart rhythm normal. I have a few heart defects to throw in, and coronary disease. I inherited a few genetic issues. Just wanted to give you some background. I'm kept alive by a lot of meds and a pacemaker. Plavix is one of those meds. Just giving you some idea that I've gone down this path bigtime, so I understand your fears and questions.

Personally I do not like studies. I want to be tested and treated for my symptoms and diseases, not researched. Although if this is the fastest way to get checked, then that's what you have to do. Our medical systems are quite different. Since I'm an established heart patient, I'm at the top tier for treatment. As one of my cardiolgists said regarding migraine--if your heart doesn't work, then you don't have to worry about your migraines. Hmm, tough words but true.

Would I go through the testing? Sure. What they are doing is going to be quite painless. EKGs and Echos are simple. Really nothing to get stressed about. Invasive testing, yes, that does have some risk but they don't go that route unless needed. My case is extremely unique, so it can't be applied to the average patient.

If I had a PFO, would I have it fixed? Probably. All depends whether surgical repair vs. catheter delivered devices have the best chance of fixing a PFO.

Remember, the most important part of this process is to get results for YOU and not for a study. Studies are aimed at gathering data and not treatment--that's my big concern. However, if that's the route you have to go, then you have to do what you have to do.

Enigma, yes I had a stroke in 2006. It's classed as a cerebral vascular accident. It's due to stopping Plavix and aspirin for a procedure. It hit with a severity of a migraine, left sided. Before the stroke, most of my migraines were right sided. The stroke nailed some parts of my vision, coordination, and depth perception, and a few other things. For one thing, LOL I can't parallel park a car for the life of me and it screwed up my putting on the golf course.

Things can be pretty complex, so feel free to ask questions. If you have a specific, throw up a post or shoot a PM. My migraines seem to be rooted in cardiovascular disease and a few central nervous system problems. Each person is different. Some people respond to anti-depressants or anti-seizure meds. Some respond to cardiac meds--most don't. Their side effects are too much. Migraines are so tricky that it really as you know takes a lot of time to sort things out.

I don't have a regular neurologist. I frankly can't stand them. Between my family doctor and myself, we manage the problem. I haven't visited an ER for migraine in years--it's all due to my family doc and me working together, and prescribing the right medication. And it comes down to will-power and flat out dealing with these monsters.

Good Luck!

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Post  Petzi Tue Jan 11, 2011 7:42 am

No hard feelings Enimga bounce

My surgery was to remove the Corrugator supercilii muscle. To see if I might respond positively to this type of surgery I had to undergo the Botox test. Only when responding positively to Botox there is a chance that the surgery might work. Botox worked borderline in my case, but I still pressed ahead with the surgery (desperation, you know).

Given the fact that Botox only worked moderately I should not have been surprised that the surgery wasn’t the big success I was hoping for. Yes, there is a lasting effect - I cannot frown any more and I was able to break the daily cycle of headaches, but secretly I was hoping for a much more dramatic improvement.

I did have an MRI in the past and it came out all clear. Diagnosis confirmed: common migraine.

From your post I noticed that you seem to have a hard time dealing with the stress of having constant migraines and worry about your job big time.

I am a massive “worrier” myself and had major anxiety and depression issues as a result. A few years ago I started Cipralex (an antidepressant specifically designed for all sorts of anxiety disorders) and it was a miracle migraine cure for a while for me. Now the pain preventing effect has worn off, but since my anxiety is under control I can deal much better with the stresses of being a chronic migraine sufferer.

Maybe this is something you might consider too.

Love

P.
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Post  Enigma Tue Jan 11, 2011 8:22 am

THank you, Porche fan for sharing that. THis has been a double monster of a struggle for you and hearing your story of your proceedures and your success' I am a little less afraid. I've only ever had to consider my head before and not my heart. The entry to my heart is with a catheter so it is the least invasive.

With all the pokings that you have had at your heart, it is valuable to me to know that you would consider it.

THanks again,
Enigma
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Post  Enigma Tue Jan 11, 2011 8:31 am

Hi Petzi

Getting rid of daily headaches must be a major score! Was it sickly headaches or full blown migraines?

I do have anxiety issues and watch myself for going overboard and I have learned ways to pull back and let go. Like you, I am on the same Cipralex but I don't think it helps with migraines. It does work great for me for depression and anxiety. Also, if I have a bad run of migraines and I'm really bunched up in pain, I will take Ativan at bed which will relax the muscles and takes away anxiety for good measure.

Enigma
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Post  Petzi Tue Jan 11, 2011 9:15 am

Enigma,

I used to have migraines at level 10 (worst pain ever) with my head in a bucket throwing up like there is no tomorrow.

That was before I threw all caution to the wind and started to take a triptan at the smallest sign of a migraine approaching. Now the headaches are kind of bearable, but I spend most of my time in a drug induced haze and sleep an awful lot. Sleep

Love

P.
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Post  Enigma Tue Jan 11, 2011 9:22 am

Which triptan and how many do you take a month? I take Imitrex and I'm guess I probably take 20 - 30 a month and I hear conflicting stories if that is bad. Maxalt and DHE doesn't work at all for me.

How much triptan/month is too much?
There is conflicting claims that triptans cause rebound. I personally don't think so but I could be in denial. I'm wondering if you do?
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Post  dcook60 Tue Jan 11, 2011 9:50 am

enigma, when we sufferers take the drugs that work for us, i've noticed that suddenly we are "overusers" and get accused ot MOH (medication overuse headache).

we all have our opinions about that, here, and there are many past posts you could read about it. there is NO hard/fast rule. some people and docs believe in it strongly, and some think it's balderdash. there are studies showing that the triptans PROBABLY are not culprits here, but other studies that show they might be.

many here have had to make the decision to continue doing what works, and hang the consequences. for instance, besides myself there are others who take daily triptans, and feel we have to take the chance of heart issues, because WE HAVE NOTHING ELSE that works at all, and gets us out of bed and into life.

personally i am not willing to just lie down and die. i'm 70, have to work, and must have more quality of life than i would have if it took fewer triptans.

i get 48 per month, two different ones. yep, this is LOTS. i usually don't use them all, but i need the security of having a few extras for the days when i must take multiples. maxalts are allowable at 3/day, and amerge at 2/day. i only take more than one when i'm desperate; have important things to do.

and i always try to put off taking the second/third ones to see if eating or taking a super-hot bath or other activity will lessen the pain, which sometimes does work.

but the first pill MUST be taken at the beginning. since i wake up from sleep with them, often the head is out-of-control already, so i'm unable to take a triptan at the first twinges. so be it.

i've done this regimen for 17 years now, and have seemed to "get away with it", as my heart has been thoroughly checked and seems fine. mind you, i wouldn't rexcommend this to ANYONE, but if a person has been through all the preventives and other drugs, the triptans can surely be life-saving.

one post of mine a couple of months ago (a rant) told about how i visited a new neuro, only to have him make up his mind in the first few SECONDS of meeting me, that what i had was MOH. end of discussion. hey, doc, you didn't give me a chance to get a word in edgewise, and to tell you that for the first 25 years of my killer migraines i didn't even take ONE ASPIRIN. nothing.

so it's not that i'm a wimp, is it? i just need relief so i can get through my life. this jerk wasn't worth a medicare payment, and i consider him the worst doctor ever seen, in my long journey of seeing many many specialists.

so i'd advise to read the real STUDIES on daily triptans and make up your mind that way. maybe somebody here has the energy to post those.....i don't, i have a sinus infection and must go to the sinus doc today, and somehow also work.

sinus infections are constant with me, because of malformations in that area of my head, and of course, are all connected together with the other head pain. sinus head pain is hardly distinguishable from migraine, at least for me.

good luck to you! dianne
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Post  Enigma Tue Jan 11, 2011 12:44 pm

THanks Diane.

I guess that's the bottom line; to do what works. I like to check in with like people and see if I'm on dangers path.

The medicine booklet's recommended dosage errs on the side of protective liability for the pharmasuiticle company, the doctor is not God and doesn't know everything, and every year I push the envelope. This year I'm considering tampering with my heart.

There is no record of what dosage kills a migrainer because dead migrainers don't talk.

Good to know that you are 70 and a daily user and still working. You go girl! Don't let that beast get you down!

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Post  Petzi Tue Jan 11, 2011 12:58 pm

I totally agree with what Diane said. At my lowest point I took as many Imigran as Diane. I managed to reduce this to about 12 a month and I don't hold back one bit.

But that is Diane and me. There are others on the forum who had success with medication holidays and others have grave concerns about the long term side effects of such a regimen.

We are all different and I think it is up to the individual to make the decisions that feel right.

P.
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