Mayo Diagnosis - BFS = Potassium Channel Dysfunction

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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby SecretAgentMan on July 2nd, 2013, 8:14 pm

BFSBurger wrote:Seventh, having spoken to you offline, and knowing what you were going through, I am really glad you found the strength to keep going, and that you didn't throw in the towel. Losing spouses is something that I know has happened to others on here, so you are in good company. I truly believe that there is an element to this disorder which quadruples our reaction to normal anxiety. Both on the physical level (body's reaction to adrenaline and cortisol), and on the purely emotional level (a significantly magnified anxiety response that seems nearly out of control compared to our "normal" state). This can cause problems with relationships I am sure. I really do have reason to believe that either our immune system, CNS, or some sort of invader directly affects our brains with this disorder, and truly does make us an emotional wreck. I wish that could be proven so people don't blame themselves for their sudden inability to handle the stress of this disorder. But I am nearly 1,000% confident that this is the case. I have had so many strange episodes of crying, and utter despair, that I have surprised myself. I have been through a lot in my life, and never had such extreme reactions to things. Something has changed. I hope if you blame yourself at all for her giving up on you, you will put that blame in the context that something has been modified - even in your personality, with all of this. I don't believe for a minute that its just "muscular" and nothing more.

-B-


[email protected]#% well said BFSBurger...
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby garym on July 3rd, 2013, 7:36 am

BFSBurger wrote:I really do have reason to believe that either our immune system, CNS, or some sort of invader directly affects our brains with this disorder, and truly does make us an emotional wreck. I wish that could be proven so people don't blame themselves for their sudden inability to handle the stress of this disorder. But I am nearly 1,000% confident that this is the case. I have had so many strange episodes of crying, and utter despair, that I have surprised myself. I have been through a lot in my life, and never had such extreme reactions to things. Something has changed. I hope if you blame yourself at all for her giving up on you, you will put that blame in the context that something has been modified - even in your personality, with all of this. I don't believe for a minute that its just "muscular" and nothing more.

-B-


first let me say that this condition can be hell on the family....that fact, in my case, lead me to get on meds to help with the anxiety because I was driving my wife/family crazy with irrational worry. I'm sorry that Seventh lost a relationship over his condition. Really sux when the people closest to you aren't available when you need them... I also want to add to the above statement by BFSB that even if there is something physical happening to us or just extreme anxiety response, everyone here should understand that it doesn't have to be permanent. Each and every person here should understand that their fascics may never go away, but the anxiety and worry can and will disappear with time. Fighting the anxiety that accompanies bfs should, in my opinion, be the first step everyone here should take. Once the anxiety is under control, a twitch suddenly becomes just a twitch and not a signal sent by our bodies of impending doom.......when that becomes a reality, wow, what a great day!

Take care,
Gary
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby BFSBurger on July 3rd, 2013, 10:01 am

garym wrote:even if there is something physical happening to us or just extreme anxiety response, everyone here should understand that it doesn't have to be permanent. Each and every person here should understand that their fascics may never go away, but the anxiety and worry can and will disappear with time.

This is true. Things do "settle down" outside of the twitching. Thank God for that. This ... inflammation ... or whatever it is ... in our brains .... in our nervous systems .... and the exaggerated anxiety response we experience because of it, does decrease. I can't speak for others but for myself, there seemed to be a "building up" phase. An "amping up" period ... where it got worse... and worse... and worse. An acute stage, as doctors would say. Then after that point, things seem to improve. For some the improvement is huge. For others maybe only a little. I believe I helped the "fading" period of that inflammation problem by making those lifestyle changes previously mentioned. I honestly believe those food intake changes and the exercise regimen, and even my mitochondrial supplements increased the speed of improvement by at least double. The twitching? It does what it wants. It seems to be the one thing that may never go away. However, I see more people here who report complete resolution of twitching now, than I did when I first registered here, and they all followed strict lifestyle modifications. I should note that *have* seen a direct correlation between inflammation levels and twitching frequency, so as the acute phase decreased, so did the twitching. Maybe if I were a monk in Tibet, I would reach 100% clearance, even of the twitches. But they seem to be the last to go, if at all. Once again thank you to God that the rest seems to be somewhat manageable with lifestyle mods, if not completely curable with them. And time. Give it time. It works on its own scale. Moves at its own pace. You must wait and be patient, and be calm. Stick to the diet regimen, and be consistent with both exercise and ample rest.

You want to create a universe of physical non-inflammation and emotional calm around you, for prolonged periods of time.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

Postby SecretAgentMan on July 3rd, 2013, 11:41 am

BFSBurger wrote:This is true. Things do "settle down" outside of the twitching. Thank God for that. This ... inflammation ... or whatever it is ... in our brains .... in our nervous systems .... and the exaggerated anxiety response we experience because of it, does decrease. I can't speak for others but for myself, there seemed to be a "building up" phase. An "amping up" period ... where it got worse... and worse... and worse. An acute stage, as doctors would say. Then after that point, things seem to improve. For some the improvement is huge. For others maybe only a little. I believe I helped the "fading" period of that inflammation problem by making those lifestyle changes previously mentioned. I honestly believe those food intake changes and the exercise regimen, and even my mitochondrial supplements increased the speed of improvement by at least double. The twitching? It does what it wants. It seems to be the one thing that may never go away. However, I see more people here who report complete resolution of twitching now, than I did when I first registered here, and they all followed strict lifestyle modifications. I should note that *have* seen a direct correlation between inflammation levels and twitching frequency, so as the acute phase decreased, so did the twitching. Maybe if I were a monk in Tibet, I would reach 100% clearance, even of the twitches. But they seem to be the last to go, if at all. Once again thank you to God that the rest seems to be somewhat manageable with lifestyle mods, if not completely curable with them. And time. Give it time. It works on its own scale. Moves at its own pace. You must wait and be patient, and be calm. Stick to the diet regimen, and be consistent with both exercise and ample rest.

You want to create a universe of physical non-inflammation and emotional calm around you, for prolonged periods of time.


Again, another home run post BFSB. I just want to add that you don't need to be a monk in Tibet to achieve the state of well-being you describe. What follows will by my beliefs, but please hear me out. You can indeed 'create a universe of physical non-inflammation and emotional calm around you' and still live a normal life in the world you live in today. Perspective is everything. Everyone's perspective is based on their life's experiences as seen firsthand through their eyes, but it is also based on their choices and judgment. For example, you could give two different men $1,000. One may choose to be happy and view this as $1,000 they did not have before and be grateful. The second man may choose to be upset and think that it should be more and think about how it doesn't make a difference because they have so much debt and so on. Their perspective defines the experience for them.

There is an energy associated with this perception though. Humor me on this one. If anyone has ever watched the TV show the 'Dog Whisperer', the main guy Caesar always talks about projecting your energy as the pack leader because dogs respond to that. Animals in general are very sensitive to the energy we project. People are in general much less in tune with this, but there are several examples I can use illustrate that we do indeed pick up on it sometimes without ever realizing it. Many times it is categorized as instinct or intuition. If you’ve ever walked into a room and just felt that you know there was an argument going on, even though you didn’t witness it, this is an example of reading energy. If you’ve ever had the feeling of being stared at from across a room this is another example. When you first meet someone and have either a good feeling or a bad feeling you are picking up on the energy behind that person’s intentions or motivations. It is very much a part of nature and dogs are a great way of demonstrating this. Projecting the energy of a pack leader takes confidence and intent. It is more than words and motions. It is a force of nature that follows through your mental state out into the physical world and has real effects on those around you, not to mention your own physical body.

When you stay centered on your core, the foundation of who you are as a person beneath the dramas, circumstances, and details of your life, you find an inner peace that is unshakable by anything external to you. To reach this state does indeed take action, practice, and mental discipline, but it is achievable for EVERYONE. The reason being is that you don’t need any external props, tools, or resources to get in touch with who you really are. Everywhere you go, there you are. No matter how many different fronts we put up, titles we create for ourselves, or professions we identify with, buried beneath it all is still the unique individual that you are.

Often times we put up fronts to hide our fears. We crate titles to avoid insecurity. We identify with our professions to fill the void in our egos. These things that we do never address the problems we try to hide and therefore do not solve them. In fact the problems persist despite them and the energy behind that permeates our environment including our physical bodies. I am a big believer that this is a major source for the physical manifestation of chronic illnesses. Yes physical things happen to cause the symptoms of diseases, but what prompts those physical things to start happening? Where does the first domino fall? Every fire starts with nothing more than a spark.

I am not saying that diseases such as BFS can be cured with a magic wand where you address your emotional issues and insecurities and wham you’re better. What I am saying though is that I believe that in order to have true healing these things cannot be ignored. The energy you project into your environment will not produce an environment conducive to healing unless you start putting out a vibe conducive to healing. That vibe cannot be put out if you are in a state of fear, panic, frustration, agitation, anger, apathy, or any other negative state. The vibe conducive to healing will only accompany positive states of appreciation, gratitude, joy, love, and so on. This is why it is so important for people to actively work to change their perspectives. Choose to appreciate the little things in life rather than spending every waking moment worrying. It takes baby steps to turn it around, but it is entirely possible. Every moment we have a choice as to how we will proceed.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Mayo Diagnosis - BFS = Potassium Channel Dysfunction

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