Nauthiz

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

just remember lots of fluids, fruits are great also contains vitamin C and majorly water.

I don't want to offend you, but the way he pulled data for that chart is a little unreliable... http://en.wikipedia.org/wiki/Joseph_Mercola If you read about Dr. Mercola on the web, he's known for being a conspiracy theorist who uses scare tactics to gain believers, so I'm not quite sure his opinion is any kind of fact about swine flu. But I don't want to argue about it, I just wanted to make sure you knew that about his reputation.

One thing to note is that Dr. Mercola has been issued two official warnings from the FDA about putting the public at risk with his opinions on the use of drugs and medicinal practices.

If you don't like mercola you can also watch the video by CBS on his page... the point is the idea of swine flu is highly inflated by the media and people need to relax.

What did they find? CBS reported:

"The results reveal a pattern that surprised a number of health care professionals we consulted. The vast majority of cases were negative for H1N1 as well as seasonal flu, despite the fact that many states were specifically testing patients deemed to be most likely to have H1N1 flu, based on symptoms and risk factors, such as travel to Mexico."

This is normal. Most people(healthy and unhealthy) will have a increased heart rate after eating. It has to do with the fact your body uses increased energy to digest food. I think for pots patients it is simply more noticable and a slightly higher heart rate.

Also the more calories you eat the greater this will be. If you eat several small meals a day you might never have a problem with this.

I have seen alot of worried people here about the swine flu so i thought i would post this. If anyone reads Dr. Mercola's website i read good article today about the majority of swine flu probabe cases not being swine flu. Here is the chart he posted. So if you think you had the swine flu and are immune don't take that as fact, also don't take the swine flu as any type of so called pandemic.

http://articles.mercola.com/sites/articles...restimated.aspx

I ask this because it seems like its becoming less of a problem for me, but my other symptoms are still there and new ones still come. My heart rate usually goes from 80ish sitting to 100 or up too 120ish on standing but slowly starts to normalize around 80-100bpm. However i still get swallowing problems(one of my biggest symptoms), digestive upset alot of burping etc, headaches, eye stiffness, calf/ fore arm stiffness. Can anyone relate too this? It seems like im getting more neurological symptoms lately and i am hoping i don't have MS or something, makes me scared.

sounds kind of scary. When you think about all these weird causes. Lets just hope none of us have these weird degenerative diseases. Im going to my first neurologist in a week also in tucson, lets see if he knows anything like this guy lol.

I seem to get muscle stiffness (not really weakness) in the same areas of my body frequently.... I've noticed it mostly in my left fore arm, and right calf, kind of strange alternating sides. Does anyone experience this and if you do is it general in the same areas? Have you found anyway to help reduce stiffness?

SOrry dont mean to annoy/cause alarm.

But I have heard of zero patients who have required a heart transplant from POTS. There are different types of POTS sp different presentations would be expected. But I think the medical advice that you have received is inflammatory.

Infact I am forever wondering how doctors can presume to talk with such definitive knowledge about any of these conditions - the research is in its infancy. Ask your doctor if he can definitively demonstrate why you have dysautonomia? I assume you have a hyperadrenergic presentation?

i thought a heart transplant didn't really make sense either for the doctor to suggest. I thought in POTS the heart was not defective but the nervous system, so would a heart transplant really do anything?

This is a statistical survey, so numbers are the most important information needed. If you would like you include more information, you are welcome to.

1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years)

He asked me that question actually. And i said i read 2-5 years, and he said "yes that is true, but sometimes people don't get over it, and its life long." He also said its life altering to me and not life threatening.

2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number)

Currently i don't take anything, i was prescribed florinef and mitodrine but i did not take them, im not a medication kind of person, sounds crazy i know.

3. How long do you exercise per week? (please state your answer in minutes per week)

I usually do 20-30 minutes 3-4x a week of weight lifting.

4. How many grams of salt do you ingest per week?

Probably no more than average, salt i don't think has helped me much. But i haven't given it a big fair chance either im sure probably.

Does anyone get this? I used to think it had to do with headaches alone, but sometimes i get it without a headache. My eyelid visually looks the same as the other but it feels stiff, or tense, or tight? Im not sure why this is, its kind of confusing. it feels like it sticks when blinking or something. Can anyone else relate to this?

I worked out my arms real hard yesterday and they are super sore, but another thing i noticed is they feel itchy all over too. Is this something from pots?

OK this might sound wierd i don't know. Today i am having a "bad" day and i noticed something. I get very full engorged veins in certain areas. Examples would be, laying down i felt a fully / puffy vein in my temple. Standing up the vein in my head went back to normal, then my veins in my feet felt engorged puffy. I sit down my feet return to normal, i start palying guitar then a vein in my hand becomes engorged. Is this blood pooling, what is this ?? It seems to be directly related to position. If i lift my arm up the puffy vein in my wrist becomes smaller. If i put my hand down it becomes engorged again.

It seems like i feel pretty good if i get a decent 8-9 hours of sleep. But i noticed if i sleep too long like 12 hours for example i feel worse when i wake up. Brain fog, and just generally worse feeling for the rest of the day. Has anyone else noticed that?

i have a lot of Gastro problems and i have lost A LOT of weight, with trouble gaining as well. I don't know if have gastroparesis or whatever, but i def have esophageal spasms, Acid reflux, IBS etc. I have found that so far i have had success getting more calories eating a diet high in healthy fats. I take flax oil(3-4tbspoons), and eat alot of almonds, and drink Orange juice every meal. You'd be surprised how many calories those additions can add. For example a bag of almond crunch, i snack on that alot, is easy to eat and contains approx 800 calories right there. This may not work for you but it might!

I just wish I could get an appetite to eat! Drinking ensures are getting old! OJ really affects my reflux. I will look into the almond crunch. And I do eat almond butter straight out of the jar!

Thank you!

Rene

Yeah almond crunch tastes amazing. You can get it also from iherb.com i order snacks from there, also pumpkin seeds are high calories as well. These all have omega-3's which are good for you. Also try flax oil by the tablespoon, 1 tablespoon = 120 calories with great omega-3.s Also for orange juice Try low acid no pulp orange juice. Its alot less strong that regular OJ and has same calories and better taste in my opinion. So far all of these have been good for me, and i think i feel a bit better sometimes(MAYBE) because of these foods. I also have been eating Japanese sticky rice, delicious and seems to be acceptable for my body also. You can get this in microwavable forms at some stores. Those are the main things i've been using as a staple for my diet, i also eat a lot of fruit. Hopefully some of these things will work for you for extra calories! Also i usually have no appetite but it has slowly increased since i have been lifting weights and eating more fats. But the real trick to gaining weight is consistency, which is HARD for us. Oen day we feel so terrible we can't eat, the next day we eat fine, so therefore we get nowhere. Just gotta keep on trying everyday thats what i am trying my best to do.

Anyone notice headaches after working out / lifting weights? I seem to always get them its kind of a pressure headache/deep aching. I also get a bit fogged out.

i have a lot of Gastro problems and i have lost A LOT of weight, with trouble gaining as well. I don't know if have gastroparesis or whatever, but i def have esophageal spasms, Acid reflux, IBS etc. I have found that so far i have had success getting more calories eating a diet high in healthy fats. I take flax oil(3-4tbspoons), and eat alot of almonds, and drink Orange juice every meal. You'd be surprised how many calories those additions can add. For example a bag of almond crunch, i snack on that alot, is easy to eat and contains approx 800 calories right there. This may not work for you but it might!

I almost always feel better later in the day. Say, from dinner time on. I usually feel real crappy right before lunch. Anyone else and why?

I think i do. I usually feel worst after waking up, pretty bleh around lunch time, then after that a bit better. Then once its really late i started to get worse again.

I have vasovagal syncope. If I have colon cramps before or during a bowel movement I pass out. My heart flops, sweating, nauseous, blood pressure falls & it takes me a few hours to recover. I live in fear of a stomach cramp especially if I'm away from home. I'm not a dr but it seems reasonable to me that the vagus nerve could cause your symptoms. Are you taking any med's for your symptoms?

When I feel the sick cramps start I take a low dose Levsin S/L but only if I have too because of their side effects.

nope i don t take any meds at all. I don't get any syncope but i think my BP is low sometimes.

It seems to me that lately alot of my symptoms stem from action along the vagus nerve possibly. For example eating causes symptoms, digestive problems(burping, bloating etc), sometimes standing even causes digestive problems, Bowel movements can cause symptoms even heart palpitations(feels like a flopping my chest kind of unusual). Could this all be from stimulation of the vagus nerve? I also have problems swallowing sometimes, and drinking liquids.

And my POTS has been pretty bad the last 9 months - actually the worst its ever been so I was trying not to think about this and then when i had to, trying to plan so that I wasnt feeling so bad.

Typically it was scheduled in the window of time during the day that I feel my worst...

So i bought a 750ml bottle of orange juice and a 750 ml bottle of red mizone (like gatorade) and skulled it all beforehand. I was fine POTS wise, my heart rate was up from nerves a little, but I did ok. But then when the other speakers started I neeeded to go to the toilet REALLY bad. Now this was an important presentation where I couldnt leave. SO i held on - it got worse and worse and when I finally got out of there at an hour or so later I went to stand My bladder actually hurt and I nearly peed my pants in front of all my bosses. My bladder was so full and achy that I couldnt walk and had to waddle out of the room with all my bosses looking at me like i was a martian. I couldnt explain it to them so i just said 'busting haha'

Thought this story - although painful for me might make some of you laugh...

i feel your pain man my bladder hurts alot after holding water in. I also feel a increased urge to go when i need too, more pain, more pressure.

Article i read, i am trying to change my mind from a victim to a fighter. Here is the article if anyone is interested. This article gives a good idea of how we can change or perspective. I know our illness is worse than some of the examples of this article, but for the most part it fits. Hope this helps the spirits of others here.

The Choice

Why is this happening to me?!! Why do I have to suffer like that? This is just more than I can bear!

Do those phrases sound familiar? Usually, people have different responses to similar problems and so, when life gives them a hard time, some may cry, others may feel helpless, some become desperate and a few may try to get a hold of themselves yet fail. Some however, choose to fight!

Your reaction to each of life's challenges depends on your choice. Whether you want to live as a victim or as a warrior is something that is completely up to you. No one can escape life's problems and no one can control everything in his life, but we can control our reactions to those problems and crises.

The Spirit of a Warrior

Basically, Warriors are people who say No.

They say no to rejection by being persistent and eventually forcing people to believe in them.

They say no to unemployment by studying harder and increasing their qualifications until they find a great job.

They say no to unexpected events by being flexible.

They say no to failure by learning from it and using it as a step on the road to success.

They say no to depression and unwanted emotions by attempting to achieve a deeper understanding of themselves until they master their emotions.

They say no to life's problems by challenging them until they are solved.

Becoming a Warrior

Now onto the practical part. How can you become a warrior? I?ve already mentioned at the beginning of the article that letting yourself be beaten up by your problems or resigning yourself to your fate is just a choice. Your subconscious mind simply scans its choices every time it faces a crisis and selects the best choice available. Thus, becoming a warrior is no more than adding a new choice in that list so that your subconscious mind can choose it. This choice is to fight on instead of giving up in the face of pressure.

The second step is working on changing your self-talk from a beaten up style to a warrior style. For example, instead of saying ?why does this always happen to me, why do I always have to be rejected? you could say ?In time, I'll make you regret rejecting me.?

The third step is to stop listening to media that victimizes you, like songs that contain phrases similar to ?I have tried so hard but life is ?bla bla? or ?wish I could be someone else?. This style of media will surely make you end up feeling helpless and desperate.

To make a long story short, warriors do have problems and troubled times, they just choose to look life straight in the eye instead of choosing to be victims.

article from http://www.2knowmyself.com/Motivation/Insp...ior_spirit_fear

I started my fight today by lifting weights. It felt good to get that fighting attitude especially while pushing up some heavy weight. I pushed myself past a point that i normally would, doing significantly more weight, and though i didn't feel great per say after it, i felt accomplished.

i just hard an attack like this last night. I woke up, well i guess the morning technically. i Woke up with insane brain fog, i felt so dazed and confused, like my brain was deprived i just felt terrible.

Anyone get strange random weird feelings? Like stuff that doesn't make sense or can't really be categorized? Like for example some weird feelings i get suddenly include, feeling like im not breathing right, but it appears i'm breathing fine, feeling like my voice has changed and it feels different when im talking(but audibly it hasn't changed), feel of warmth on my face, yet to the touch feels normal etc.

Yesterday morning I was stung on my left index finger by a bumble bee... I immediately made an aspirin/water paste and applied it and the initial pain went away, but I grayed out and woke up on the floor.

I took 2 Benadryl (per Dr instructions last sting I had) and when the finger was throbbing, heart racing, and still foggy I took 2 more Bebadryl 30 mins later - still Dr instructions,

I have known for some time that red wasps will do major BAD things to me - and admittedly this is the first bumble bee sting.

But I wonder if I reacted to the sting - or just anxiety from being stung? Yesterday afternoon I took an extra Atenolol because my HR stayed over 120 all afternoon.

BEEware of BEES!!

I think anxiety may have played a roll. If it was anaphylactic shock you probably would of needed a epipen to stop it. Benadryl might of made a difference to that it might not of. Anaphylactic shock is a severe drop in blood pressure, that often has hives, major swelling, respiratory distress etc, usually happens within the first few minutes of exposure. Its hard to say though, to be positive you would have to get a allergy test.

I have had a anaphylactic reaction before, so when i get bug bites i immediately get anxiety even if i dont have a bad reaction.