News article for Fran

Hi Fran

I found this in this Sunday's magazine section.

"HEART DISORDER CAN CAUSE SEIZURES

If you've had seizures and are being treated for epilepsy, you should know that, according to the Journal of the American College of Cardiology, 30% of such seizures are due to a heart-rhythm disorder rather than a problem in the brain.
If your anti-epilepsy drugs aren't working well, see a cardiologist. You may need heart medications or even a pacemaker."

Looks like they're catching up with you, Fran. Do you suppose they should tell the neurologists and primary care doctors? Maybe you should be teaching at the College of Cardiology.

Elaine

Thanks Elaine.

I think more neuro's know about this than cardios. For near enough 20 years I was told my seizures were epilepsy. Then when I insisted on seeing a neurologist it was found that I didn't. He said it came from the heart. The sad/bad thing is that the cardios would not have it that the seizures came from my heart. They would not give me tests for it, they said it was pointless. "I had AF" and that was that "and AF does not cause you to pass out and seize" (shows how little they know). The monitors I had never caught an episode as the one that I had with a monitor was the type I had to manually pick up and record. Ever tried doing that mid seizure? I think they thought that my seizures were attention seeking but no-one ever said that. My carido also had me down as an alcoholic and made me feel like an alcoholic in denial when I said I did not drink.

It seems to me my Dr's did not want to acknowledge that they had mistreated me for 20 years and already had wind that I was not best pleased with my treatment as I had set balls in motion to read my medical notes and get copies for second opinions. (my seizures led to near death experiences on 5 occasions). They all clammed up and became unobtainable. The Establishment made it impossible for me to get hold of my notes with one excuse after another, disputes on how much each copy would cost, and I left it when I was told I had to go through the courts. I wanted my health back not added stress. I mean there is something wrong when you have been diagnosed with E and no-one had ever done a test to see if it was true. Both the respiritorist (was told by cardio I probably had narcolepsy) and neurologist said it was my heart so for those of you who think I am anti cardio - this is the reason. But I do recognise there are good Dr's too. Just not in my area.

They closed ranks on me and now I am on my own. But luckily I found my way out of the maze and found out what caused it all.

Best of luck to all you too.

Fran

Fran,

I have noticed that during an afib attack I always become highly agitated. It is not anxiety, because I have been having afib attacks for eleven years and don't worry about them. The agitation is as if every nerve in my body is fired up and it becomes impossible for me to sit or lie still. I have an uncontrollable urge to move arms, legs, etc. It is not a real seizure, but I wonder if it might be a mild type of similar disorder.

I wonder if other afibbers have experienced this.

Carol

Carol - when I experienced afib - I did not have the symptoms you describe. I was anxious - in the early years and then I learned how to relax an ride them out. Your reasoning, though, is plausible.

Jackie

Fran
I have great admiration for you. I can feel the admiration of others on the board as well. I hate to think that you went through that horrible ordeal in order to help us. But I'm so grateful you share what you've learned with us.

You have so much to offer. Your knowledge is from your experience not from books which makes it to much more valuable.

You're an inspiration
Elaine

Fran,

I work in the medical field and even though the institution creating your medical record is the "owner", you now have a RIGHT to your medical records by law (at least in the US). It is true that there may be a charge associated with the copying of the records, but if it seems excessive, you could probably contest the charge by finding out what the copy service charge is at a similar institution. Try working through the Patient Advocate or Risk Management office if you find a large discrepancy. At my facility, the medical records department requests that you complete a Release Of Information (ROI) and then they will provide the information. Patients also have the right to amend their record if they find an erroneous statement.

Marilyn

Carol,

I'm finding, and still learning I might add, that catecholamines, such as norepinephrine and epinephrine, and serotonin and dopamine, for examples, are utilized in the body and then broken down for excretion through the methylation process. (See conf. room topic). If the methylation process isn't working properly, then any of these components could build up and be left in the bloodstream to overexcite or overtoxify the body, just as a drug would do, if you were missing an enzyme in the liver that metabolizes it. Maybe norepinephrine or epinephrine is doing just that, because your exhibiting symptons of overstimulation, just like if one had more coffee than the liver could metabolize. It would be interesting for you to take the test that Fran posted in the CR to see if you are an over or under methylator. I hope everyone takes this test. As you will read in the CR, as well, I spoke with an old friend, Dr. Wise, who is a microbiologist for Natural Alternatives International, and he said if we were going to focus on anything, it should be methylation, as he feels most everyone is lacking methionine. I truly feel that this is where the answer lies.

Think about it. We are assaulted daily, by many things, i.e. pollution and pesticides, prescription or nonprescription drugs, certain foods we eat, and just the normal processes of excreting by-products of metabolism, and this all must be done by the liver. If this function is interrupted in any way, any of these metabolites are left to do harm in our systems. If I understand it properly, sulfation is a secondary pathway, to assist methylation, and it uses molybdenum. I'm low in both pathways, because I was low in all sulfur aminos, B12, B6, trapped folate, because of low B12, and molybdenum. From Jackie's post, taurine helps clear glutamate toxicity, and this process won't work if one is low in molybdenum. This is the sulfation process and I have had flutter caused by glutamate. I have had the same effects caused by sulfites, pesticides on the golf course, and smelling paint fumes. Some have tyramines or caffeine as triggers; all handled by the methylation and sulfation processes. It's really starting to make sense, at least to me.

Richard

I don't have "anxiety" per se but I do notice that when I am having lots of ectopics, I also have "restless leg" or something like that at night. I can't keep my legs still. They ache a little, especially the right one, and just feel generally uncomfortable and it's nearly impossible to sleep. So I get up and do something useful with the time until my system calms down enough that I can sleep. At such times I take extra magnesium glycinate, fish oil, flax oil, CoQ10 and Vitamin E and that seems to help.

Marilyn, great suggestion. Unfortunately Fran's in Scotland. Dunno if they have "patient rights" over there!

Carol

Your agitation during AF sounds to me like you are neurotoxic at this time. This would happen to me with monosodium glutamate, sulphites and phosphates. What free glutamate etc (neurotoxins or excitotoxins) do is stimulate nerve cells - so much so that some are stimulated to death. They fire so rapidly that they wear themselves out. I can't say anything with authority but to me that is one stage away from loosing conciousness and seizing. Do you ever get bangs in your head? - like gun shot going off, or clicks like a telly being switched on and off (but the brain).

Elaine
Thanks for your words. It is true all I can do is speak from personal experience, but the great thing is that a lot of it is now being backed up my medical literature. Its just such a shame that it takes so long to filter through the system till it becomes common knowledge.

Marilyn
As kestra says I am in Scotland. We do supposedly have patients rights. But they make it very difficult. To my mind they say the right words so they are working within the legal frame work, but when push comes to shove the Dr's get frightened as they do not record things well and start putting obstacles in your way. I have hears stories of parents fighting tooth and nail to get their childrens notes and ending up having to hire solicitors to do it for them. Then the solicitor finds that pertinent notes have been hidden or lost so a full history is impossible to get. I remember one time I was left on a trolley with my medical notes at my feet. So I read them. The nurse was horrified and snatched them from me and told me I had no right to read them. I felt like I had been snooping and made to feel like I could not be trusted. I just want to know what they are hiding. But now don't want the hassle of meeting people like this head on. I would rather not live in that world - or be a part of it.

Fran