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My secret


Ernie
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For the past 2,5 years I have been keeping this secret but now I just can take it anymore. I know how some of you worry a lot and I did not want to scare anyone. Tonight I speak because I feel so lonesome.

Since June 2003 I have been told by 3 different world researchers in 3 different research facilities that I am a very complicated case. The 3 of them have told me that I have the highest adrenaline level and they don?t understand why I am still alive because people and lab animals die before reaching the level of adrenaline that I have. They can?t tell me what to expect of my POTS because I am the benchmark.

They told me my heart and breathing could stop anytime during an episode!!!!!!! And then I would fall into coma and die.

Last week, after looking at my blood work taken during an episode, my specialist told me that I have to be careful because I could die during one of them!

I try not to think about it but next week I have 2 days of testing and they are going to trigger 2 episodes. I just worry so much because I want to get the tests because it will help find better meds but I don?t want to die.

Before my brother died, I was telling myself that doctors were exaggerating. But now I know different and I worry.

I am sorry if I can?t uplift your spirits when you guys and girls are down but I feel so crushed by this sense of doom that I don?t have the emotional energy to give you what I had when I was ?healthy?. I think of all of you every day and I hope I will still be there for you many years to come.

I am going back to bed now hoping to sleep it off.

Thanks for reading me.

Love

Ernie

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Hi Ernie,

I am sorry that this has happened to you. However, I am glad that you have shared your secret. That is a tough burden to bear alone, and you are among friends here. You are not alone, Ernie. With every spell, we are all right there with you. :)

While my experience is nothing compared to yours, I know that feeling of isolation; being a "medical anomaly". I, too, have "strange things" that doctors currently cannot explain. I, too, am a benchmark. In fact, I was one of Dr. Low's research patients (this was after I saw him for the medical issues, he asked me if I would do it because I had things happen during testing that he could not explain).

I know it is scary. For me, I really tortured myself with the "what if" questions, because the truth is that when I go into autonomic crisis, nobody really knows what to do with me, not even the so called experts. It's just me and my body, fighting to hang on - alone.

What helped me was practicing mindfulness, and living in the current moment. I also have tried very hard to come to terms with death itself, and when I did that, the "what if" thoughts stopped. While I don't want to die either, I know that I will someday. We all will. It is a very natural part of every life cycle. The way I approach it is, since death is inevitable, why worry about it? It is guaranteed to happen, so why waste my valuable energy worrying about it? I try instead to focus on myself here and now, while I still live and breathe. I focus on my family, the people I love.

Your body has been through **** Ernie, but you are still here. If your body made it through before, it can make it through again. And remember - doctors are human beings, and the only difference between them and us is simply more education. They can NEVER say with certainty when someone will die, so do not take what they say to heart (pun intended B) ). You can do this, Ernie, and you will come through. You are still here, in spite of the worst health, YOU ARE STILL HERE! Have faith in yourself, Ernie.

We will all be here with you!

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Ernie,

you are one amazing woman--that's a lot you've been given to think about and to cope with on a daily basis. Do they think that a pacemaker or implanted defibrilator would help you? Not sure if that's even viable as an option...

I understand why you might worry that telling people here my scare them, but you know what? That's okay. Sometimes this stuff is scary and other times is just an annoyance. If telling people here helps you lighten your load even a little bit, it's worth it. Some who might be prone to worrying will worry anyway...if not about POTS or NCS, then they'll worry about something else. It's out of your and my control. I feel honored that you trust us enough to share your story with us.

I send you wishes of hope, answers and better health. B) Nina

Edited by MightyMouse
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Ernie..

wow.. thank you for sharing your secret with us..that is quite the burdon that you are carrying around inside of you for all this time...

I wish that I were there with you tonight b/c I would sit there and talk with until you felt better..

and I wouldnt worry about making people worry ernie.. you worry about what you need to do to keep your self sane and with in a support system..

you are a strong women ernie...and it had to take alot of strength and courage to step forward.. and you offer so much to all of us.. let us give something back to you.. and let us help you through this.. what ever this may be.. I.. we.. are here for you ernie!! You have to be strong considering the type of crazy things that we deal with on a day to day basis.. not to mention other things!!

I wish that I could find that magic pill for you!!

take care ernie.. BIG HUGS to you my dear B)

Linda

Edited by dizzygirl
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Ernie, thanks for sharing your secret with us. Please know that there is no need to keep secrets from us, you shouldn't have to go through anything alone. I hope they find some good answers for you and a great treatment for you to be on. Stay stong B)

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Ernie,

I too have a very similar problem. Dr. Low said my level is the highest he has seen. I have sleep apnea, which at the time was under control. Now, after respiratory arresr 2x in1 yr, more testing. I sleep with oxygen. Take plavissssx, and a eye drop that lowers BP. It rises while sleeping. This will as well as possible take care of sudden cardiac death. I feel much safer since the oxygen startes-the same day my sister died*.... Something to thiink about and you can pm me anytime I have stuff from mayo re:sudden cardiac death. I am gad you shared this with us. Togeghter we are mighty and can help more. Separetly we are humans trying to survive. Peace to you. Miriam

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((((Ernie)))) I don't know what to say but I know how I feel. I feel the tears in my eyes as I type this. I complain so much about myself and how I feel though I certainly have nothing close to what others here experience including yourself. I wish I could be there and give you a hug and tell you everything will be allright.

I'll be thinking of you when you have your tests and I truly hope there will be a most positive outcome out of these tests. Finding something that can help, your magic pill.

You are a very strong woman. I read and hear many on this forum with that will to fight and you certainly are one of them. B)

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Dear Ernie,

What a terrible, horrible secret to have to carry around. Actually what the docs have told you is enough to scare the pants off anyone.

You said:

"They told me my heart and breathing could stop anytime during an episode!!!!!!! And then I would fall into coma and die."

Well if they said it, it must be possible, however it hasn't happened yet. Your heart has sustained you so far.

As for prescribing tests that will deliberately put you in jeopardy, will what they might learn be so valuable to deliberately put you at risk?

Life is never certain and we are never really in control, even though we like to think that we are. We only have this moment. Don't torture yourself. The doctors are doing a good enough job of it.

Make the best decision you can regarding testing and then do whatever you decide without second guessing yourself.

As Jeff and I make decisions on how to fight his cancer, this is what we try to do. Sometimes we just shrug our shoulders, sigh, and say, "It's a crapshoot. Here is our decision and come what may." Amazingly, that attitude has really helped us to live better in the meantime.

Love and hugs and energy and all good thoughts and wishes to you

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Ernie

I can't imagine living with that possibility in the background but that's what you have been doing for years - LIVING and fighting to find the source of your disorder and adapting your lifestyle to LIVE to the fullest. You are an extremely strong person and I'm sure that this strength continues to protect you. Hopefully sharing your secret will lighten your burden somewhat - it just gives me more hope that amazing things are possible when you choose the right attitude.

You are an inspiration!

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Guest Julia59

Ernie,

Your and amazing person. You have done so much for us by being part of research and sharing your stories of triumph and strength-----i'm glad you were able to get this out.

I'll pray for you to get through the testing -----and also for new drugs that will help you have a better quality of life and better control of your symptoms.

Blessings to you Ernie.

Julie :0)

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Ernie, I am so sorry you have been feeling this way!!! B) I think we all share this secret at times. But my doctor never tells me things like that.

I think it would have been much nicer if they helped you, then told you something so awful!

You know how much I care about you, hang in there and know how incredibly strong you are. You have such inner strength, it's beyond belief, and if sheer will power could be your magic pill, you would be so healthy!

You should never have to worry about what you tell us, we are your family and you have all our support, right guys????

Sending hugs and love and prayers.....morgan

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Ernie,

I don't know what to say. My heart sank as I read your post. That you have to face this fear every moment of every day makes me so sad. You are such a caring person and so often the first to respond to anyone's post. You are such a backbone here. Your fear of scaring others reminds me how much you think of others. But I must agree with MM - those who will worry, will worry. We want to be a support to you as you have been to us, so I'm of the opinion that you should share your fears with us and allow us to pray for you. And that I will be doing!

I want you to know you have been an inspiration to me many times over the past year I've been on this forum.

Sending much love and a hug,

~Roselover

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Oh, Ernie! What a burden to carry all on your own. I am so glad that you were able to share this with your friends here. You know we are always here to support you and help you through all things. Maybe next week will prove to be a step towards better solutions for your condition. I will be thinking of you and sending you the very best thoughts and wishes! xo Laura

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Ernie,

That's a lot to have been carrying around for this long. I wish you would have told us sooner so we could support you more, but I understand about not wanting to worry people.

I would personally wonder whether the tests are worth the risks. You have to weigh the risks vs. the potential for a treatment to prevent the episodes. I certainly would struggle with this decision myself and don't know what I'd do.

Please know that you're a special person, and we all care about you very much and want you to do what's best for you. I'm thinking of you.

Amy

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Hi ernie.

Im so sorry you are going through this pain and stress, its must be a very difficult time. Im going to offer some comfort to you.

When you have your tests your will be in perfectly safe hands, you have specialists and doctors around you. You need these test so the doctors can help make you better in the future. If the unfortunate was to happen isnt it better that it happens in a hospital rather then happening at home alone, or in the street? You say youve had this for 2.5 years, and so far nothing has happened from what i can see (sorry if im wrong). Over the 2.5 years you must have had several or a number of attacks that havnt caused death right? So to be fair the chances are it wont happen this time.

You have help around you, you will be safe! People die crossing the road, or even worse in this age people kill you with a gun, your chances of living if the worse does happen (touch wood it dont) are very very high!

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Ernie,

I hope you feel a bit better now that you shared your thoughts, fears and experiences and I hope you know how much we all care about you and want to share your burden and try to lighten your load!!

This disorder is very frightening at times and I think you deserve a safe place to come to without fear of the impact on others. While that is commendable and shows how much you care about us we also need to be able to support you the best that we can and it's more effective when you can share as much as you feel comfortable with.

Not lecturing here....just trying to let you know that I hope you feel you can share whatever you need to here!!!

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Ernie,

I cannot imagine living in your skin. Your strength astounds me. I'm sure it must feel good to get that secret off your chest though, that must have been a terrible burden on you. You will be in my thoughts and prayers. If you ever need someone to talk to, feel free to email me (I check my messages frequently).

- Lauren

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Ernie

I am glad that you shared this with all of us. I do understand why you held on to it. Don't worry about scaring others, and I hope it helps you to share your situation fully. We are family, in a sense, and want to know and support you. If you doctors think this is true, I am glad they told you--but I just wonder if there is so little still understood about this class of disorder that the level of certainty may be low. I know you have said in the past that you have relatives with similar problems who lived challenging, but long, lives.

As others have said, none of us knows what tomorrow brings. A friend of mine nearly died three weeks ago of Stevens Johnson Syndrome--a very rare condition that came out of nowhere. Now she may be facing blindness. I am still in shock over this. She was a healthy, vibrant woman with no health problems, in 24 hours she goes from that to near death and now possibly sight-impaired for the rest of her life.

It is experiences like this that make me realize, again, how tenuous life is, for all of us.

What I admire so much about you is that you have chosen hope over fear. This takes tremendous strength, courage, maturity and discipline.

I will be thinking of you during your test, and trust that you will be in safe hands should anything happen that needs emergency response. I hope it brings you closer to answers.

Katherine

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Hi,

Thank you everyone for your support and understanding.

I had nightmares all night long. It was so annoying because I wanted to sleep well and think of positive things but I kept waking up frightened.

I am writing a partial answer tonight because I want to think about the nice answers you gave me before anwering completely.

I asked Dr Goldstein and one Canadian POTS specialist and they told me that a pacemaker would not help in my case.

The 3 specialists cautioned me because I have high BP in my brain and I could have a stroke. Also, since my hormones are so out of norm I loose K+ during episodes and besides the paralysis and could have a heart attack. The high adrenaline causes coma and death in "healthy" subjects.

That is why my specilialist told me last week to try and avoid episodes as best as I can because it is very dangerous.

Wednesday and Friday I will be having differents tests so that the specialist can pinpoint more my problems. They will be in the room with me when they trigger the episode. I am supposed to be hooked to EKG and BP machines.

I am afraid because I don't know if they will know what treatment to give me if my heart stops.

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Hi Ernie,

I really admire your bravery. I can't imagine how you must feel, so I will just say that I care and that I appreciate your thoughtfulness and maturity in the way you posted here. Thank you for sharing your secret with us. Sometimes it helps just to tell others who care for you. I hope the tests can help the doctors improve your treatment.

Kristen

Edited by JaneEyre9
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Just wanted to let you know that you're in my thoughts and prayers! You're sooo brave! I know it's extremely difficult going through what something like this, my dr's have told me similar things. they've told me that i have an extremely rare case of pots, and my heart can stop at anytime, and i can die. So i can understand. Just remember you're not alone.. we're all here for you.

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Ernie,

I know this is extremely frightening to you. We are all supporting you in our thoughts and prayers. Do you have anything to help you sleep at night so that your body can relax and feel rested? There are nights when I can feel my adrenaline running high and I wake up scared out of my mind throughout the night.

Do you think these upcoming tests will be valuable and reveal anything you don't already know? If not, then you may want to consider not doing them. I know we've all been subjected to tests and research in hopes of finding an answer or a specific treatment.

I pray that if you get these tests, that they will be worthwhile for you and the doctors. You may want to have a discussion with your doctor about what could happen to you if you have an episode during the test and find out what he/she thinks is the best course of action.

I think you have to weigh your anxiety and quality of life against what the tests can do for you in the short term or long term. I hate to see you worry about the tests and make yourself even more stressed.

Thanks for sharing and unloading this burden. We are all here for you Ernie.

Hugs,

Gena

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Ernie - I feel so badly that you have had this secret for so long..... Please know we all will support you through this no matter what.

The power of words are so strong, and its one thing I truly dislike about the medical community...they seem to disreguard what they put out there in words.....

Please stay strong......know you have lots of support here on this forum.

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Hi Ernie,

I agree with all of the other responses. I want to thank you for sharing your secret and can't imagine what you must have been going through all this time. I really don't know what to say, other than that you will be in my thoughts and I wish you good luck on your tests. If you feel comfortable with your doctor, maybe it would help to talk through your concerns about taking the tests, and how he might respond if a problem arises.

-Rita

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