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My Last Post Here!


Nauthiz
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Hey guys i was diagnosed with Dysautonomia about 2 years ago, and i just want to share some stuff. I have been a member here for awhile but stopped posting awhile back. Just little about me i am 23 year old male from Arizona.

I have been making some good improvements, and i believe i will fully recover in time, probably less than 6 months i am estimating at this rate(or be very close to optimal). I still have evolving symptoms that change into new stuff fairly frequently but i take them as they come as a challenge. Dysautonomia is a challenge of mental and physical strength that will make you stronger than people who have not suffered in such ways.

I have been taking things daily as a challenge of my will. For me i came to accept this as i rather challenge life than be defeated by it. A few days ago i drove 27 miles up a mountain just to see if i could do it. I got to the top of mountain walked around and came home. Yes it did cause a symptom flare up, but it was worth it. I started working out EVERYDAY, and yes i do have exercise intolerance. However i do believe it is improving now that i am working out more! I usually do 15-30 minutes a day rotating walking, weight training, yoga and meditation. I really believe exercise to be KEY on your health, especially since it has a regulating effect on your immune system. My motto was if the exercise wasn't challenging, i didn't do enough.

I found foods that i can eat, and i started eating alot of it! I am underweight in my scenario, so i found food i can tolerate and started eating 5-6 meals a day. This is helping me slowly gain weight, and i am seeing good results!

Now im gonna put what has been paramount to my progress. ATTITUDE. I watched a video lecture by the microbiologist Bruce Lipton, this changed my whole view of illness and recovery. I stopped going to doctors, doctors were not going to cure me. Every doctor i went too, the same story. You have probable dysautonomia, most likely via the immune system. They then would prescribe florinef or something else that i didn't want to take.

So i realized that i do believe i am capable of healing myself. The body is MIRACULOUS and has endless possibilities, you are a collective of a 100 TRILLION living organisms, each cell capable of living on its own! So do not hate your body, love your body and embrace it. Give your cells a loving and growing environment.

Here is a list of things that HAVE helped me. And i hope they can help you too, and if they can't maybe they can also give you some good ideas.

1. Challenge yourself daily! My mind told me i couldn't do certain things, but i did them anyway! I take each challenge as small victory towards recovery.

2. Get a good diet! Find foods that work for YOU. Test your foods, do not just assume they are good or bad from theory.

3. Excercise! This is so important. Try to excercise atleast in some form or manner everyday.

4. POSITIVE ATTITUDE. There is no reason what-so-ever, to think negatively. What is the point? There is none! ALWAYS think positive, as positive attitude DOES encourage healing.

5. Do not dwell on your illness! Some people will most likely disagree with me on this but avoid posting on forums anymore than necessary. Do not discuss your handicap unless necessary, do not view yourself as handicapped! I stopped checking WEBMD for every symptom i got, and i just learned to breathe and relax.

Now these are my PERSONAL views and things that i have found to help me. I hope some of these ideas will encourage others and help you on your road to recovery! You can recover, dont let anyone tell you otherwise!

-Nauthiz

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God bless you! Thanks for your input. I understand and agree that discussing my infirmity on a regular basis can be counterproductive.

But, looking at it from a different angle, I feel that I can be of assistance to people who are recently diagnosed, or have not developed the coping skills. I was in that position once, and I needed somebody to "understand".

It's been a pleasure. Adios amigo!

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You remind me of me the first time I improved and went into relative remission. But after three relapses my view has changed in some ways:

I agree that pushing yourself seems to help with POTS - it does in my case and I find that gradual exercise yields significant benefits. Dude a year and a half ago I was running two miles three times a week with POTS.

I agree that often because we look normal if we just keep it together, few people will notice we are ill.

I agree that a positive outlook probably is helpful.

I agree that allowing the illness to limit your life only gives it more power.

I agree that dwelling on it is probably not helpful - despite the inclination that POTS seems to make you do it.

I even think that perhaps treating POTS isnt helpful because it doesnt allow the body to get back to an equilibrium. But that is just my own experience.

However, I think that you can stick your head in the sand or you can try and be as informed as possible, which is what I decided to do this time. This means researching and asking doctors questions, getting different views and then deciding for yourself which ones appear on the right track. I often read and Im often told all sorts of BS about POTS and related disorders and most of it isnt really based on anything profound, but there is an evolving understanding of these illnesses and with that there could be big changes right around the corner and i want to be in line to reap the dividends!

Good on you for getting back on with your life. I often say to myself that once I get back to 20% or so I just pretend Im well and no one asks or knows that Im slightly ill. Slightly is managable - but full blown isnt.

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Nauthiz,

Dysautonomia is a physical disease. As I explain below, it can be made 1000x worse by a positive attitude. Moreover, no doctor can tell patients about the many lifestyle changes they need to make within the allotted time for doctors' visits. So I think that what you wrote is poor advice for at least some people on here.

Before I became symptomatic, I was a very positive person.

Even when I developed symptoms and was told to remain the way I had always been, I did so and was positive. Even with the positive attitude, I got so ill that I nearly died from this disease. And I could not do the normal things I had always done. I still believed I would get better because I was told nothing was wrong with me and it was in my head. I knew I could rectify that.

But with that attitude, I got horribly horribly sick.

I was unable to eat, breathe, and live in the conditions my family and friends lived in.

And my life fell apart. But I was still positive!

At some point, people realized I needed different food and conditions from normal people. That made things a lot better. But they still had no idea what was really wrong with me. I was still positive! But I couldn't do anything with the positive attitude.

It's been a lot of years and today, having been unable to breathe, have a normal heart rate, or eat like other people -- even with the positive attitude --- and some months into knowing exactly what I have and what medications I need to treat it effectively, I cannot get them.

It is that much more difficult today because when I first complained of symptoms of this illness, I could get no treatment and was told to ignore physical situations which made me ill. I have a whole history riddled with descriptions of things I can't tolerate -- all of which are described on this site --and all of which are imputed to fantasies I made up.

Nobody even wrote about my wonderfully positive attitude in my medical records!

Because I was never diagnosed (or treated) and left to wilt in the heat (because it was all in my head), even though I remained positive, I now need some medications you do not need. It is a struggle to get them which I think is an enhanced struggle because of the misdiagnoses. And yet, I have to focus on getting the medications (it takes an awful lot of time) because I want to breathe and have a normal heart rate. As of right now, I have appealed to four doctors with explicit descriptions of what I have and what will help. I have not gotten medications I really need.

Some of the things on this forum are a real help. I had no idea I needed to drink certain things, eat certain things, and avoid certain things until several months ago. It is a lifestyle which is not described in any health magazine or by any doctor I have ever met.

I have never gotten so much proper health information anywhere as I have on this forum. Had I not spent a lot of time concentrating on what is in this forum, I would have had that much more trouble eating, breathing, and being in excruciating pain the past few months.

If we lived amongst people like the people on this forum, the usual health magazines would have the proper information in them. But, being that this is an illness, we have to get our health information here. That's a lot of years of misinformation some of us have to correct.

Everything you wrote as advice has hurt me tremendously in the past and made me very sick. A considerably more negative and realistic attitude in the past on the part of everyone I knew would have helped me in the past to be almost completely physically healthy with few modifications of lifestyle, and reach the professional and social goals I always had in my life for today -- goals which I have not achieved and which I can no longer reach. Fairy tales and a positive attitude in the past destroyed me.

Had I been diagnosed and given about ten pages of information about this disease the first time I complained of a high heart rate to a doctor, I would have almost no problems with this disease today. Given what happened to a lot of people, I think that your advice is dismissive of their hardship, the terrible plight in which they find themselves today, and the enormous amount of information they need to treat themselves now.

On a positive note, I hope that in a couple of years you will send in a picture of yourself smiling in a steaming sauna designed for the healthy majority of people out there (instead of the dysautonomia spa in the ice hotel we were all dreaming about)!

http://www.newluxuryitems.com/wp-content/u...otel-sweden.jpg

If there's a miracle waiting to happen for most dysautonomia patients, that's one for sure!

If, in that future, you can also send in a photo of one of the 100 trillion organisms in the body that will allow any of us who cannot now do so, to tolerate that hot sauna, please do so. We will go out, buy the organism, ingest it in great numbers -- and immediately abandon these forums with great big smiles on our faces.

Still,

Tachy

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Nauthiz,

Thank you for taking the time to write about what has worked for you, and for wanting to share it with others in this forum. You'll have some people in total agreement, and some in total disagreement, but I think your heart is in the right place and that these things have worked for you. I'm glad you're feeling better, and if you do take a turn back for the worse, I hope you'll feel that you can still come back to the forum.

My best to you, but I have one question....How do you get 'meditation' under the 'exercise' category? Just curious...

Good luck & cheers,

Jana

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Guest tearose

May you have this as a lifetime lasting experience.

If I had a dollar for every wonderful remission I went into over the last 19 years...I'd have about ten dollars!

I LIVE a positive, prayerful, active, healthy, miraculous life...I still have this physical disability and manage the best I can. You don't stop living if it doesn't fully go away. You just become a master at management....and still have hope for something better...

May this strength and healing you have now propel you into many wonderful aspects of life!

best regards,

tearose

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Nauthiz how were you dx'ed again? I hope this one lasts for you, I've had two major remissions since 1987 when I had my first big flair of this. I was 27 when it all started, you may be young enough to be in that group that has a complete return to health. Most of things that worked for you only have made me worse, seems like my remissions just happened. I'd spend the next years trying to figure what caused them, never did, never will I'm sure. Here's to all of our next remissions.....let's hope they're right around the corner. Take no offence, I hope we never see you again.......lol.

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Good luck in your remission and whatever helps your INDIVIDUAL case.

MANY have ANS issues...some temporary. Many of the few men over the years on boards have been blessed with a temporary version.

Also, it's much more complicated for women due to female hormones that mess with things and fluctuate WILDLY as we age.

Might I add I saw a lady on Joy Behar's show last week that spoke of the DANGERS of "positive thinking." This author had cancer many years ago and was mad and ticked off and used the anger to fight the illness.

Dr. Weil in a book years ago mentioned a sweet older lady with a good attitude, who got MAD when she got ill. Again, she used her anger to her BENEFIT and coped better than any patient Dr. Weil had seen.

I second many of the posts here that positive thinking alone could kill many.

(Not to go off topic but I wonder if the THREE SEDONA sweatlodge deaths were people with mild UNdiagnosed ANS issues....but I digress) So for new pts or those in search FELLOW DYSAUTONOMIACS can help more than many CLUELESS doctors.

So again, good luck but if a positive attitude was ALL it took to heal ourselves, there would be no NEED for DINET.

:)

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Sometimes "positive thinking" is AKA (DENIAL).

I totally respect how your "dealing". Everyone has different ways of coping, but I feel one must be very careful because positive thinking can sometimes result in missing important symptoms. I try to keep a positive attitude, but GUARDED. I feel like I'm in a constant fight to get doctors to take my symptoms seriously. Dr. Grubb is one that does, but I don't try to make an appt. with him now because my problem is beyond POTS, and I have a couple other doctors who are trying to help me with those. They're about half way where Dr. Grubb is. Thery're listening at least, and one neurologist is trying to help from the Cleveland Clinic, and of course I have my EDS geneticist who is wonderful. My PCP seems OK too, he'll basically just lets me tell him what I need, and he does it. Every once in a while he pulls something put of his pocket that surprises me, so I think he actually tries to learn about dysautonomia, and EDS. I'm still struggling to get proper management of symptoms.

I figure I have two different lives. One with my buddies from the forums, and the other with the other world of family & friends. Not that quite a few of my dysautonomia and EDS friends haven't blended into the other world with this. We have a different bond, in that we know how this difficult disorder is and find different ways of coping. When one of us falls down the other one is there to pick us up----weather it's just emotionally, or actually physically finding a way to PICK US UP. There's nothing wrong with looking up the latest medical research, as long as you keep your wits about you and not assume you have everything you read about. I love finding different medical research papers that may help someone, or possibly help towards finding answers for myself. I've always been a science nerd, and it gives me a sense of purpose. It's also definately a good way to keep the brain exercised for sure!

Medical terminology is difficult to understand, but if I don't understand a word, I research that too. I did take medical terminology classes, and anatomy/physiology as part of a medical billing program I received certificates in. It was a year long program, and I really liked it. This was in late 2002, and 2003, and I was hoping to add this to part of my business knowledge and education and shift my interests in Hospital administration. I tried to go back to work but found just looking for jobs and going to the interviews exhausting. I finally accepted the fact that I couldn't work. However, my efforts proved useful in many other ways, one of them being able to understand quite a bit of the medical articles I find, and sort out which ones are useful, and which are not.

All of this helps me to stand up to doctors when they are dismissive, or sometimes even rude. This disorder has taught me a lot, and to me this is one positive aspect that keeps me going-----the fact that I can help others, or maybe even point them in the right direction.

It has also helped me to appreciate the things in life that I took for granted----like listening to the mourning doves sing, or watching the squirrels in the neighborhood. Appreciating my family more, and taking in the full joy of my granddaughters, and all the little children around. The magical wonder joy they bring is beyond my words.

I just accept my illness, and try to live the best I can with what I have, and hope that things will get better for my physically as I continue to fight the medical profession to get past THEIR DENIAL.

Maxine :0)

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Nauthiz,

Thank you for taking the time to write about what has worked for you, and for wanting to share it with others in this forum. You'll have some people in total agreement, and some in total disagreement, but I think your heart is in the right place and that these things have worked for you. I'm glad you're feeling better, and if you do take a turn back for the worse, I hope you'll feel that you can still come back to the forum.

My best to you, but I have one question....How do you get 'meditation' under the 'exercise' category? Just curious...

Good luck & cheers,

Jana

DITTO, Jana- Well said, my sentiments exactly!

Nauthiz, I hope your remission lasts & I agree with much of what you shared. I, too, am exercising harder & challenging myself more than I ever have before & the benefits have been remarkable. Unlike you, I recognize my fallibility & know I may stumble (i.e."get ill") again in the future. I like to think I'm managing my illness rather than having conquered it.

Don't make this your last post. We need your fresh perspective and viewpoint. Drop in once in awhile & brag about how well you're doing. We LOVE success stories :rolleyes:

Hugs-

Julie

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You go!! Thanks for posting what worked for you! Love hearing success stories and what worked to get you there!! Positive attitude has been key for me also in not allowing myself to become inactive and not giving up. We're all different with our symptoms, past historys, and outlooks! I loved reading your post and never plan on giving up or losing my positive attitude!!

Thanks and best of luck!!

Brye

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Thank you so much. I appreciate hearing success stories. I love hearing what works...if only for tht person...but I will try it for sure as I would love to be "normal" again. I am just so glad you are getting better.

I do think the positive attitude is a great benefit. Balance and common sense seem to be key. I try to think positvely and I take beta blockers so I can get up and down the stairs...at this point no matter how positive I am I can't control my heart rate.

Years ago I had a terrible illness. I got well (or weller)...I also know some who had it and didn't. People ask me why I got well...I say I got lucky. And I believe it.

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I think it's common when someone discovers something which really rings true for them, they think that it applies to everyone and everything and they start making blanket statements about "the key to this" and "the key to that." But like some of the others on this thread, I know my problem is not a lack of positive attitude.

But that's not to talk down your achievement Nauthiz and I'm so pleased for you that you're getting better and feeling good. I hope that we can all feel like that at some point and I wish you the best of luck in your continued health.

Janey

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