What would you want people to know?

[worththewords]

I know in the past there has been a lot of talk about how there is a lack of books and even public awareness of dysautonomia.

If you had the opportunity to inform the public of anything about dysautonomia and your life with a chronic illness, what would you want them to know?

I know this is a tough question if you are battling brain fog but I'm really curious to know what everyone thinks would be the most important thing about dysautonomia to make others aware of.

[AJVDK]

I would want others to know how it is not to know when I wake up how I am going to feel. I would like them to know that even if we don't look sick, how sick we really could feel. I would mpre people and doctor to understand POTS, to know we all go though. To know when we have a good day to enjoy it with us, when we have a bad day to understand, what we are going though, or to at leaset know enogh to be supportive!

[Ernie]

Hi,

It's not really what I want them to know but more what I want them to experience. I would want everyone in the medical field to faint at least once before graduating to know how crappy we feel. I think they would have more compassion and realize that this is not something we do to attract attention.

[futurehope]

I would want people to know that even though I look good on the outside, life is a struggle. Activities, trips, events, visiting others or having them visit me, shopping, eating out, going to church (activites that able-bodied people take for granted) all create stress which makes me feel even worse. So, I'm in the uneviable position of trying to live my life (not be a hermit) even though doing so makes me feel bad.

To sum it up. Looks are deceiving.

The real heros are the people who do everyday activities and give to others with a smile on their face even though they are hurting inside.

[12345]

I would want people to know that 2 years ago I was suffering quite badly with all the symptoms of POTS. I found a chiropractor that specialized in NUCCA which is the first vertebrae and it cured all my symptoms! I have my life back, it's so wonderful, and I urge you, if you're at the end of your rope to try NUCCA, read up on it, and go to the website upcspine.com to learn more about it and read other people's testimonials about how it has saved their lives.

Trust me, if anti-inflammatories help your symptoms at all, (or ice or exercise, etc.) then NUCCA might save your life too.

Their philosophy is that your first vertebrae should be in line with the rest of your spine and with gravity. If you've had a fall, car accident, jarring accident at all in your life (I mean ever in your life, try really hard to think back! My symptoms started 8 years after being rear-ended!) then you would likely benefit from this. Anyway, if you've had some kind of trauma, or even major stress for that matter, your first vertebrae can go out of alignment. From there it irritates all the anatomy that runs through that area. For example, your brainstem and cranial nerves. It basically causes your nervous system to be altered because messages are getting blocked from your spinal cord/brainstem/cranial nerves to the rest of your brain and causes extremely uncomfortable, and in my case and I'm sure yours too, disabling symptoms.

I don't know if this will help you, all I know is that 2 years ago my life was taken away from me by all these disabling symptoms that no one seemed to know anything about. I looked fine, all the tests the doctors did on me were fine (except for the tilt table test showed that I had "neurocardiogenic syncope" which has been magically cured by the NUCCA chiropractor, even though the doctor told me I would have to live with it for the rest of my life!).

Anyway, if you're at the end of your rope, your life has been altered by disabling symptoms and you've been told that you'll just have to "cope". You might want to try this treatment. You've got nothing else to lose right?

If you have any questions about my symptoms or me or my story about what happened (I found NUCCA after searching for a year on the internet about what could be wrong with me....I saw over 25 doctors and none could help me, this treatment saved my life!) please email me at herzogcarmen@hotmail.com. I would love to help.

[Wufflebear]

I echo some of the posts. I would want people to be more compassionate and also to understand that if you see someone who seems to look ok but yet does not always do the best at coping or pulling their weight...that there is probably a good reason. I would want doctors to understand that the human body is more than a group of organs that can be empirically tested and sorted thru...I would want people to know how yucky life in silent suffering can be sometimes. I would want people to give us the benefit of the doubt and trust what we say even when the tests say nothing.

I would want people to know that even though dysautonomia seems on paper to be simply a mass of seeminlgy benign and mildly troubling symptoms that it hurts and its scary. I would want people to really comprehend what it feels like to think you are struggling to survive on a bathroom floor somewhere in silence... and then to come out and say "oh, me? yea, I'm fine. How are you?"

I would want doctors to understand that not listening, beleiving and spending time with your patient is criminal.

[morgan617]

I would like people to know it's real. That no could possibly want this disease or the negative attention it receives. That I would not wish my life and what it's done to my family on my worst enemy.

And there are no magical cures carmella, but there are vulnerable people here, so please be careful what you post. morgan

[Guest CyberPixie]

Exactly. I have been having chiropractic treatment for over 10yrs and it didnt *cure* me.

I'd like people to know how frightening some symptoms are, how it feels like you're going to die. All the pain you can be in, how limited my life is that I cant even wash or get myself a drink. Yet, we battle on and try to make the best out of our lives and people should see that, be proud of us, not ridicule us and make out we're putting it on.

One day I'll get round to writing my autobiography! (Then they'll see).

[taylortotmom]

I usually describe it as having no rhyme or reason and being totally unpredictable.

Carmen

[MightyMouse]

I would want them to know that I can look perfectly wonderful at the same time I feel perfectly awful... and that I would want them to know that I have little control over how I feel physically.

I would want people to know that I take no fewer than 8 different prescriptions on a daily basis just to be able to function... and that the meds don't always make me functional.

I see my doctors more frequently than I see my family.

And... when I have to bow out of social activities, it makes me feel worse to say things like "oh, do you have to go so soon?", making me feel like I have to explain myself. Giving a medical history at a social occasion is embarrassing.

[janineerrn]

I would want them to know that just because I lost 40+ lbs, and look great... I feel awful. I lost weight because of nausea ect.. and when I need to rest, I need to be left alone. I have a problem with those around me bothering me when I try to rest. I never know when I may have to lay down, or leave a store, or stop in the middle of cooking dinner to res. It sneaks up with no warning. Some mornings it is very hard to get out of bed. I want people to know I do not suddenly become sick to get out of doing something.. if they could just see what I do do dispite how bad I feel.

I just found out recently my daughter in law thinks Im faking it. I am angry about that. I try my best to be the person I was before. But I cant do it all.

I would also like people t o know that several times a week I think I am going to die, literally... Its a horrid thing to live with.

Peace

Janine

[12345]

Last year I was here on this site searching for answers. My posts are likely in the archives. I know the feeling that you feel like you're going to die. It was happening to me every day. Doctors gave me attitude, others didn't understand, and I want everyone here to know that I know EXACTLY what you're going through because I was there! All I want people to know is what worked for me, and maybe it might work for them too.

And as for the post after this one about the person who has been seeing a chiropractor for over 10 years......you need to know that I was seeing a regular chiropractor for over 6 months with no help. You have to see a chiropractor that SPECIFICALLY deals with the first vertebrae, whether it be the NUCCA technique or the Atlas Orthogonal technique.

Look, I'm not some freak who's trying to play with your minds or sell something here. I'm just telling you that I know how I felt and I know what fixed it. I just want to help.

I would like people to know it's real. That no could possibly want this disease or the negative attention it receives. That I would not wish my life and what it's done to my family on my worst enemy.

And there are no magical cures carmella, but there are vulnerable people here, so please be careful what you post. morgan

[Michelle Sawicki]

I'd say the overall (dramatic) effect dysautonomia can have on someone's life. Also how symptoms can vary day by day and that people with dysautonomia can feel sick without looking sick.

Michelle

[futurehope]

Carmella,

What was your name before? I can't find you.

Also, is there a reason you haven't posted until now?

Have you written letters to the autonomic clinics at Mayo, Vanderbilt, Cleveland Clinic telling them of your findings? It would be worthwhile to let them know. Then they could disseminate the info or better yet, do studies. Have you told your prior doctors?

Also, there are different reasons for us to have our dysfunction, for example, autoimmune processes, Ehlers-Danlos, porphoria, etc.

If your method works, it is because the ONLY thing that needs correcting is the first vertebra. We may all have different reasons for our problems so one size cannot work for all.

I am very happy for your positive outcome and I don't mean to minimize that.

I've already spent much time and money and am very careful where I put my resources, so you'll have to pardon my skepticism.

[worththewords]

These are some great responses and ideas.

Personally, I would like people to know how very little we have control over our day to day life due to this illness. I can't tell you how I am going to feel tomorrow because I won't know until I wake up and attempt to start my day. I wish people could understand how frustrating it is to have your health dictate so many things in your life. Everything I do revolves around how I am feeling at that particular moment. If I stop too long to think about how much control it has on my life, it can be very upsetting. I do my best to live my life the way I want to, even if that means I am in a tug of war mentally and physically with my health.

I posted this to really just hear/read what everyone thinks that the majority of others miss when it comes to understanding our illness. I would like to have more of these discussions. I think it's important that we have a voice. Even if, for now, it's only through a discussion board.

[12345]

Futurehope,

I completely understand your skepticsm. By the time I tried the NUCCA approach it was my last avenue of anything that I could have tried.

I have not written the Mayo clinic about my findings. I have not seen any doctors from the Mayo Clinic. I have had so many problems with doctors telling me that my only problem is anxiety, or later on neurocardiogenic syncope that I have given up on them.

The only proof I have is that I know how I felt before the treatment, and I know how I feel now.

Why have I not posted until now? Well, I have tried so many different avenues of things that were supposed to "help". It seemed like they might help for a short period of time, but never took all the symptoms away or fixed my problem. I have been seeing my NUCCA doctor for a year now. I have had enough success now to confirm that this approach works for me. I didn't want to come on here spouting that I've found a great treatment until I knew FOR SURE that it works.

Why can't you find my earlier posts? Try looking somewhere between December 2003 - May 2004. I can't seem to remember my online name so I had to start a new account. I also had an old email address at that time which I have since gotten rid of that I signed up under. I would have been the one very upset because I thought we were going to have to cancel our wedding because I got so sick.

I realize that for people with more serious conditions such as Ehlers-Danlos that the NUCCA approach might not help them.

You've got nothing to lose by at least having a look at this type of treatment and it's philosophy of how a misalignment in your skeletal system can cause interference with your nervous system. It makes perfect sense and it worked for me. I don't know if I am allowed to post websites on here, but I wish I could show the website that I found that directed me to the NUCCA doctor. It's made by a guy named Greg Buchanan who had the same problem and found relief from the NUCCA doctor. I also wish I could give you the website to my doctor's office. It wouldn't hurt anything to just have a look.

Remember, you're not talking to someone who doesn't know what you're going through. I was there. I remember feeling like I'm dropping in an elevator, I remember not being able to catch my breath. I remember feeling moments of paralysis, I remember brain fog, I remember despair, I remember feeling like I was going to die. I remember trying everything to see if it could help, I remember people not believing me because I looked fine, I remember all of this and I know what you're going through. It makes no difference to me whether or not you learn more about NUCCA. Your life won't affect mine. But because I remember how it felt to feel so sick, so hopeless, and so scared........it makes me want to help others and share the information that made me get my life back. Choose what you will do with the information I have given you. If you try and it helps you too, then you will get your life back. Still, this won't affect me. I have no motive other than wanting to help.

p.s. I found my old posts...Jan30th 04 and Feb.4.04 under the name "Carmen" (which is my name)

Edited February 10, 2006 by carmella1979

[DSM3KIDZ]

I would want people to know that my symptoms do change on a day-to-day basis. One day I may say I feel fine and the next I'm sick.

Also that my voice don't change just because I'm sick. When I answer the phone just because I'm not crying doesn't mean I'm cured. Everyone always says you sound so good.....you must be better. No, I'm just excited someone actually called me.

Dayna

[Dawg Tired]

I would like for them to know that I am really not "enjoying" my retirement. I miss going to work. I would like them to be aware of the frustration I have been through going from a person working all the time to someone who had to completely re-align my self and find a different place in my universe.

Since the publication of my beek those around me understand better. I don't know how many times, after reading it, people would approach me and say they cried after reading about some of the doctors who told me I was crazy.

As I write this I am sitting in an ICU waiting room because my mother-in-law had a stroke last Firday. There is a family sitting right across the room from us whose mother/sister/daughter/aunt/co-worker was in an auto accident. She has been fainting for 3 or 4 months, having tachy and heart palpitations.... But her doctors kept telling her that she just had an anxiety disorder....

[yogini]

Great post!

I would like people to know that:

I have a serious, debilitating chronic illness. POTS is a serious illness that most people don't take seriously

Even if I look normal, I can't do all of the things that normal people do.

I can do more things on some days than others

There is only so much I can do in any one day or week

I can't walk that fast, so please walk slowly when you are walking with me

I can't tolerate heat

My symptoms worsen if I don't sleep or eat on time. I can't be out late at night

I need to plan everthing ahead of time and can't always adjust to surprises

[Guest Belinda]

I would want people to know alot of what others posted. I will add my two cents though..I would like people to know that this is a disabling disorder and that it is very real. Just becasue It doesn't have a name like cancer or heart attack doesn't mean we are not suffering every single day of our lives.

My father had quadruple by-pass 3 yr. ago and to see how healthy he is is great ..but to think that I am not as healthy as him an dmay never be again/hurts internally. He is 64 I am 28.

Gosh I love him biut you understand what I am saying..tht life is going to be an uphill battle for the remainder of my life is very difficult to deal with.

And all of the symptoms we have not just the fainting..or dizziness..I would like others to know what it is like being young and feeling like oyur about 80.

I just want people to know this is VERY REAL AND VERY SCARY AT TIMES!!!

[persephone]

I want people to know that it woul be very easy for me to lie down and give in to this condition, but I fight so hard and try not to.

Stuff that is easy for them is sometimes a real struggle for me.

I want them to know that they really shouldn't assume that if you can't see something it isn't there- I look fab a lot of the time but feel truly horrific.

I also sometimes would like people to realise that much as I joke about it,I am *NOT* cool with POTS, it DOES bother me, and sometimes it makes me feel like my world has ended. But only sometimes. Just once or twice, I'd like it if people would say "Is there anything I can DO to make life EASIER?"

THe WORST thing people can do is ay "you look fine though" as if it's an accusation, or say "awwwwwwww....poor you." I hate sympathy. To me, that's just as pointless and useless as ignorance.

Empathy, not sympathy is the way forward.

Don't EVER show me pity! Just show me understanding. And don't resent me if I have a good spell where I'm ok. It doesn't mean I won't be ill later, or pay for it big style (this is what USUALLy happens.)

[Jacquie802]

What I want the World to know about POTS is....

Just because we're smiling doesn't mean we are feeling good.

Some days we feel good for a few hours, then go down hill real fast.

What a "normal" person accomplishes in one day, is going to most likely take some of us week to do.

Just because the medicine is SUPPOSED to work doesn't always mean it does.

(For Docs) Just because one test comes back normal, don't dismiss our symptoms, KEEP LOOKING for answers!

[flyingmonkey]

I would want them to know that my illness is real, that it isn't all in my head, and that I don't collapse periodically because I want attention. I would want them to know how hard I try. I would want them to know that if I'm not complaining, it is not because I don't feel terrible, it is because I don't want to bring them down. I would want them to know that my body is weak and frustrating but my mind is strong.

I would want them to believe that I have this disorder, but not to base their opinion of me on it. I wish I could show them the strength that it takes for me each day to keep going, and the fear that one day it will not be enough, to show them that and have them understand but not pity me for it. But that is a lot to ask!!

Mostly, I just want to be believed, and respected.

[upcspine]

Exactly. I have been having chiropractic treatment for over 10yrs and it didnt *cure* me.

I'd like people to know how frightening some symptoms are, how it feels like you're going to die. All the pain you can be in, how limited my life is that I cant even wash or get myself a drink. Yet, we battle on and try to make the best out of our lives and people should see that, be proud of us, not ridicule us and make out we're putting it on.

One day I'll get round to writing my autobiography! (Then they'll see).

Exactly. I have been having chiropractic treatment for over 10yrs and it didnt *cure* me.

I'd like people to know how frightening some symptoms are, how it feels like you're going to die. All the pain you can be in, how limited my life is that I cant even wash or get myself a drink. Yet, we battle on and try to make the best out of our lives and people should see that, be proud of us, not ridicule us and make out we're putting it on.

One day I'll get round to writing my autobiography! (Then they'll see).

Hi CP, 'chiropractic; IS NOT 'upper cervical chiropractic' as described by Carmeall1979. Upc chiropractic is specific, precision, gentle and addresses the only bone in the entire skeletion which moves easily - the atlas. 10 years of 'mainstream/normal chiropractic' I think would not cure anyone. Interesting it took 10 years to work that out. Chiropractic, osteopathiic, medicine, massage, pharmaceuticals etc. did not cure me but upper cervical chiropractic did .... Greg www.upcspine.com All the best .........