the last year has been awful. a few years ago i had to endure three trips to the cath lab for a variety of ablasions for atrial issues. about a year ago i went down hard, rode the rig to the hosp & have been getting tested, stuck, poked, medicated & molested in every clinical fashion that one can invent ever since. it was only recently that the subject of POTS came up with my EP. i trust this man, but he has yet to fix me. i once owned a 97 ferrari that cost less to purchase & mantain over three years than this has cost [in terms of dollars] in just under one year. the real b**** to this is that i do not fit the typical model(as it stands currently in the research) of a post virally infected teen with a transient form of this or a female with maternal genetic history of these symptoms. in contrast i am a 36yo male former professional athlete. gee-whiz! everytime i allow myslef to recount that i cannot help but to feel fantastic frustration. i served my country,went to graduate school & played by most of the rules. the only factor that could hav e caused some damage was heavy & continual anabolic/androgenic steroid use for >10yrs. i am a proud father, faithful and very much in love husband & once enjoyed superhuman strength coupled with a good living. i can't justify the use of steroids (although nobody can tell me with certianty if these contributed to my heart problems, it would seem there is little data on the effect of Pakistani racing camel steroids on a human, go figure:/
I have endured a great deal of incredible physical pain (broken neck, 2 surgeries/fusions, 5 trips to cath lab, blah blah blah waahhhhh!) as you would expect, i have had to deal with emotional, psychological & spiritual pain as well. it is the latter of my "sufferages" that is the worst for me. i need this resolved/treated or whatever. i fear that without a "fix" on the horizon the "story of me" will come to an abrupt end.
CAN ANYONE ON HERE TELL ME ANYTHING THAT MAY HELP? i am running out of will.

FAITH
THAT TOMMORROW WILL BRING SOME RELIEF.
that's really all we have. salt, fluids, yadda yadda yadda. but faith in anything can bring a better tommorrow.

Hi Mark,
First let me say welcome, and sorry you are going through this. You will find a lot of information on this site as well as the Potsplace site.

As for fitting the typical profile, well I hate to tell you that there is no typical profile. People can get this from out of no where, after a viral infection at any point in there lives, after surgeries of any kind, but especially after any kind of brain or spinal surgery. Some are born with it and have symptoms even as a child or teen and others will develope symptoms in old age. Some will start with their symptoms after a traumatic experience and yet others after taking a med. There are probably a hundred other reasons why or when someone comes down with dysautonomia symptoms. So, there is no typical profile and yes, guys get it too, and it is not known if women really get it more then men or if it is that men just don't get seen by a doctor or pursue a diagnosis as much as the women do.

With that being said there also is no typical profile on how your dysautonomia symptoms will take hold. YOu see, we are all different, we may share many of the same symptoms but we also have different symptoms and our degrees of severity vary. Each person is an individual and there is no pattern to how or if your symptoms will progress. This is what makes it so hard for the doctors to diagnose us and so hard for the researchers to figure out how to help us. you will find some have high BP and tachy and others have low BP and tachy. You will find some only have tachy and yet others fluctate all over the place. Then you will find some will have many other symptoms that go along with the BP and HR and others have few other symptoms that go along with the BP and HR.

I don't want to be the bearer of bad news here but, as of yet there is no easy fix or cure for this illness. Now let me explain, there are meds that can help some or maybe for you they will help a lot (once again we are all different and there is no one magic pill that works on every one)You will have to work with your doctor to try and find what will wor for you and it will be a trial and error journey. You will also have to make lifestyle changes, meaning you will have to slow down, listen to your body, eat healthy, sleep as much as you can and find ways to do gentle exercise and stress managment. These things will all help. Now, just because there is no cure or easy fix does not mean that you will not get better at some point in your life, because some do, and no one can tell you why that happens and if it will be your fate. Then there are others who suffer everyday, ones who are bedridden and yet others who have to use a wheelchair. Some will have waxing and waning periods that can last from days, to weeks to months or even years. Once again none can tell you why this happens.

My best advice to you is to make an appt with an ANS or dysautonomia specialist and get started with trying to find what is going to work for you. Start trying to make adjustments to your life to make daily living easier and never give-up the fight. Don't let this over take your life as hard as that is, you have to keep going and keep trying to find a way to get better. We are all in your shoes and we all too have our days or moments of wanting to give-up but it is our support system that keeps us fighting against this illness, the idiot doctors we encounter,and the numerous tests, meds and life style changes. You have come to the right place to get support and you will need it with this illness because others will most likely not understand because you look so healthy and you were an active person before you got hit with this. But it is real and you will need all the support you can get along with educating yourself as much as possible.

I hope this explains a little more and gives you some support,
joline

Hi Inkmark - I'm so sorry you are going through such a difficult time but you have come to the right place. We have all been where you are now and everyone on this forum is really knowledgeable and very caring and helpful. For me, it's just nice to be able to vent to people who actually understand...

You mentioned ablations for atrial isues. Were they successful? Do you have afib or atrial tachycardia? Why does your Dr. think POTS? What are your symptoms? In my case, I have afib and POTS/IST (inappropriate sinus tachycardia). The situation can be a bit complex when dealing with POTS and other atrial arrythmias. This is because (according to my EP cardio) the afib is caused by an electrical glich and the POTS/IST is caused by a dysfunction of the autonomic nervous system (although some feel that certain afib is caused by the dysautonomia). The first thing you want to do is ask your EP cardio for a tilt table test (if you search on tilt test on this site you'll find lots of good info). Did your Dr. mention this? It will help definitively diagnose POTS if you have it and help identify blood pressure issues. Once you have a proper diagnose you will be more empowered to fight it.

You said that you do not fit the typical profile. I think you'll find that with many of us. Although I am a woman, there is no one in my family with POTS. You did mention that you had several surgeries and a broken neck. It is believed that surgery or extreme trauma to the body can trigger dysautonomia. As for the Pakistani racing camel steroids - well you're on your own with that theory - can't help you there!

I can definitely relate to your discouragement. It can seem like life is on hold. For me, I have gone from being an active, outgoing, busy, musician mom to a pretty boring, sometimes isolated, stay-at-home mom who can feel pretty lousy. My biggest challenge is not letting this illness become my identity and trusting that God has a plan in this. But, you know what? There is hope. Once properly diagnosed, there are meds and other things that can help your symptoms. You will learn what your triggers are and what helps/hurts them....

Most importantly, your story will not come to an abrupt end. There will be much more to write and you have found alot of new friends on this forum to offer your support. Again, the first thing is to get the right diagnosis and then go from there......best of luck to you and keep us posted.

You are quite a writer! Very articulate--I enjoyed reading your post. I know that doesn't answer your question, but just wanted you to know.

Have you been tested for autonomic issues? Vanderbilt does autonomic testing. Don't know which side of the country you are from.

There is always hope. Don't give up. I was in hospice for 3 months. I've been bed bound for months at several different times. I am now walking thru my house, taking care of myself, getting out more in my w/c, doing things with my kids and truly enjoying life. All this mess is easier to swallow when you have an accurate diagnosis. I have multiple types of dysautonomia. Once I was diagnosed they could treat me easier--not always with success but eventually they were able to help me some.

God is good. He can get you thru anything. Read some on the Psalms in the Bible and you'll see how normal it is to struggle but how powerful God is to pick us up and comfort us. Hang in there. You sound like a strong man. There is hope.

i sincerely appreciate the responses to this. i know that i was not terribly specific with the details of my clinical history regarding the heart as well as the information that has gotten "us" (me, a cardiologist/ep, internist, shrink & the little boy blue) to the point at which i find myself currently. as far as the atrial ablasions (x3) they eventually eliminated the afib. it was not until year later that the symptoms that [are now associated with POTS] surfaced & another 6-9 months of the afore mentioned "clinical molestations" before the term surfaced on the radar. yesterday (my 36th b-dy) i enjoyed the TTT first thing in the am. i believe that this was done so that Vandy would get all the info needed for the ANS center there. of course it could have been done just to further prepare me for a stay at gitmo. i have already been to Vandy once (its only a few hrs away) & was not impressed. maybe my exp will be better now that every possible piece of quantifiable data has been collected at great pains & expense. honestly, i looked for others on this forum to read their exps. not realy to share mine, as i have long since dropped any hope of feeling even half the man i once was. i suppose that most people feel this way in general as we circle faster and faster around this sun, however knowing this offers me no comfort. besides the older we get the better we "used" to be anyway. I have run the whole course of meds: beta-blkrs, ccb's, flecinide (almost killed me), etc. currently i take florinef & midodrine (going to stop the midorine asap, i feel like someine filled my head with club soda, punched me a few times, spun me around, poured bugs on my scalp & gave me a wedge-E!) w/ a host of other meds for other stuff. regrettably none of the meds were or are fun, as if they were [fun] i would not be spending my time here. to the contrary you would be able to find me happily swerving my way down the local interstate. since that is not the case, and i am here seeking information & .......... now that i think about it, probably some comfort in knowing that this is real. you'd think i'd already know this is "real" from the consistant bruising on my head and face from my land-dives. not to mention the frog that smokes crack & lives within my chest wall constantly remininding me that he wants out - preferably through my mediastinum. nevertheless, i feel .... i am defective. i use the word defective intentionally, as it connotates the imbedded nature of this syndrome as opposed to say, broken, which indicates a possibility for repair. to be completely honest i am almost ready to go they way of the chinese made, lead based paint covered Defective toys. off to the landfill! i am always happy for those that find comfort in Faith. however, without getting into detail i must state that my presence on this rock is due neither to ......... well, lets just say that i have always held the belief that only two things in this existance are beholding of my failth. simply that there is a begining and an end. up-down, black-white, hot cold. i guess in order for some boy in bangladesh to live a healthy long life, somewhere else in the world another boy must fall-ill (or some kind of equally negative variant) i'll stop myself from waxing philosophically laced language now, i could have probably just said that i have no faith & i have seen many-a cruel and horrid reason to not. with all that nonsense stated, i still really appreciate simply reading your exps. on the subject of the "story of me" i'll say that i am the one who has "written" most of it & it can't be written without me. i also have the ability to stop writing the "story" when i so choose & after the events of the past year it is safe to say that my hands are tired of writing & i lost interest in the story when Everything Slowed Down because of this damn thing.

what a beautifully written pity party.
i said faith in anything. god, little boy blue. the man on the moon i don't care. but sitting at home in a pity party isn't going to help either. and excuse me but if the yeng yang thing is ur belief than go help someone else and maybe it will come back to you.
i may be out of line here, but an eloquent writer giving up in front of everyone, is just sad.
i was an abuse victim more than once, and for different reasons. i am still here. i figured out that it was much easier to stay with the abuser, than it was to stand up and walk out the door, pregnant with a small child. (i was 17 at the time)
giving up is always the easiest way. somehow i don't feel that you are a quitter, at least your writing speaks more volumes to me on that, than your content.
but i have been wrong b4.
btw, if everything is black and white, how come gray is a color?!!!!
good luck to you whatever you decide.

Inkmark,

Welcome.

You sound like I did years ago, but a little more selfish. It feels real good to feel you are in control (in control of something!) of whether you stop writing or go on. We all have THAT control...at anytime in our lives.

Super-man, you are stll strong or you would have stopped writing after the 2nd ablation. Giving up the hope of returning to that former self? - welcome to chronic illness. You will meet many people here who are/were going through the same thing.

I for one appreciate your candor. It reminds me of myself. And I am still here, too. You ran out of will just as you found people who have had to reinvent theirs several times over.

Bring it on, super-guy, frustrations, money woes and all. Atypical or not, you are acting completely human in the face of pain, loss and ongoing, unrelenting illness.

And BTW, no, I do not have a "fix" for you. In this world of Dys right now, there is no one-size-fits-all. You will try, try again until you find a mix that works.

You played by the rules and you are not getting your pie. Yep, this is NOT fair. But I am hard-pressed to believe that your slowing down means the end. Au contraire. It is called re-invention time. Not pretty. Don't have to like it. But it is what it is.

I am also hard-pressed to hear a veteran, super-athlete putting himself down!

Now, before I start acting like a really tough mom, we are here for you like no one else will be because we understand the struggle. But, you cannot give up. Period.

Judi

P.S. Nice to meet you.



Judi

Hi INKMARK...sent you a Private Message.

Hi, Inkmark,
you said that you had a TTT, what came of it? Did Vandy give you a specific diagnosis when you were there? I know you said that they were of little help, but I am wondering if whatever they tried you on did not work, and so then you gave-up. You also stated that you went to grad school, so, what do you or did you do for a living? Maybe there is something else in this field that you could do, maybe even from your home. I think you have to find some hope right now, but maybe you are looking for the wrong hope. What I mean by this is maybe you are looking for the hope that this whole nightmare will just go away, one where there is this quick fix and you will resume your life as it was. Instead maybe you need to look for a new type of hope, one where you take stock in what you have and what abilities you can still do. A hope that you can start a new life with what you have and what you can now do. One where things that seemed unimportant in the bigger scheme now take center stage. It sounds unimaginable and very hard, but you can make it happen. We have all had to do it and many of us have had to do it more then once, but this is what keeps us going and gives our life purpose. At this point it sounds like your life has lost all its purpose and you are damn angry with all that be for this. I don't blame you for feeling like this, heck we have all been there, but you have to put in the time and energy to change what is and make a difference. If you truly believe in charma and what goes around comes around, then start putting out the positive energy, feel blessed for what you have had in your life and what you still have. Share your experiences and knowledge with others. you write beautifully and could put pen to paper and make people sit up and listen to what you have to say.

I hope you find the purpose you need in your life to fight.
Joline

Hi, welcome to this group of people with chronic illnesses that have no fix. You seem to think that because you were a super athlete that you shouldn't have this problem....in spite of 10 yrs of camel steroids. Well, my son is 36 and took horse steroids for the same amount of time--won all kinds of body building awards, but his heart started to give him a fit at about the same time yours did. He has had caths, meds, you name it. He also feels sorry for himself due to it. I don't really think it is self pity, but depression due to the strength of the steroids. He doesn't have a ferrari, but he does have a Humvee with the works......seems to go with the personality and steroids. I am not trying to put you down, I am trying to say that there are others out there with similar situations.....36, average age for most pro athletes to have to slow down, and that is a big ego buster. This is his mother speaking. He has called me from cities all over the US threatening suicide due to whatever his current "crisis" is. This is the time in your life where you really have to put a lot of will into living, especially with POTS. I see the signs in my son, but am praying to God I am wrong. Please think of your wife and your child or children. What happens to them when you take the easy way out? I am not going to lie and say I never thought of it, but it is the people who care for me that keep me here. We are the strong ones. A weak soul couldn't handle what we have to on a daily basis. Take in a deep breath, get your specialist, and keep going. Who knows you may be one of the ones that lose this illness. I keep praying that I am. I want to play with my grandchildren and take them places I had planned before they were born, and now I can't even drive-----------yet! We're here for you. I asked my md to help me with suicide if it got bad enough, and he wrapped his arm around me and said "Sweetie, for some reason, your Creator wants you here, and I am not going to help you change his plans. You are a wonderful caring woman, and I know a lot of people love you, and its not fair to them either." He's a pretty smart man, and I trust him impeckibly, so I am here for the duration, and hope you are too.

Whenever I ask God, "why me?", I always hear the response "So who did you have in mind?"

Hi Mark,

We all have our difficulties in deaing with the chronic part of this and the perception that we will never get better.

I have had another very rare disease for 35 years with a much worse prognosis. When I was first diagnosed with it there were 35 patients in the world identified with it and 21 out of the 35 had died within the first year of diagnosis.

That said - you can imagine how I have found gratitude every year that has passed since then as I have beaten the odds 35 times over. Interesting as I am writing this - the number 35 is more signficant this year than has been in the past...

I have never actually asked myself "Why me?"... I have always been a pretty introspective person. I have had people asking me "Why you?" - and my response has been - "Why not me?"... What makes me above the other human beings in this world who have to deal with adversity.

My best advice to you is something I have been doing for many years...

When you feel down and as though this disease is so crummy - make yourself think about other people in the world.

First think about the fact that you were born in a society (I am guessing the U.S.?) where you have modern health care. You have been even luckier than many on this forum since you discuss how fortunate you were able to afford a ferrari.

As you sustained a neck fracture - I can relate as my daughter had a paralyzing injury to her spine in 1989 where she was told she would never walk again.

If that had been the case (which fortunately she is walking but still has many issues with her lower extremities - bowel and bladder) - we had so many around us at her rehab that had much worse injuries. The neck injuries were the worst for the patients and the head injuries the worst for the family as they were not there in mental awareness.

I frequently think if I was born in India, South America, Africa - or any of the countries that did not have medical care for those who could not otherwise afford it - I would have been dead at the age of 19. I would have drowned in the fluid that was accumulating around my right lung.

I think of the homeless people who do not have a roof over their heads and many who are sick and live in the worst living conditions - no heat in the winter - no air conditioning in the summer. So many who do not eat every day.

I sincerely look at the fact that even though there are many out there much better off than me - there are so many who are so much worse of than me.

There are so many issues I can evalute that would be so much worse than what I am dealing with. I have my mental capacity. It is so frustrating and very difficult to remain independent - but as long as I possibly can I will.

I don't feel that I have anyone I can count on to help me if I can't take care of myself as no one wants to be burdened. I do understand because if I were healthy I would probably feel the same way.

I have to keep my mind wide open and try to understand where others come from by seeing as many sides to the story as I possibly can to stay in the reality of things and not just my own side of it all.

My one and only brother is dealing with Hepatitis C and many other problems right now... I wish I could give him this talk but at this point in life as I am his sister - he would take it as me being judgmental. He is very negative and doing the self pity thing as well. I love him so much and wish I could help him - but since I am too close to him it just doesn't work as he resents me when I try.

I hope that since I can't help him that maybe I can in some way help you as you don't know me and I am not judging you. I am totally aware of how the self-pity grabs people. I have not been a victim of it but there is so much more to it than just selfishness. I understand that and get it.

It is a phenomenon that makes it very difficult for the person in the position to find the other ways of looking at the situation.

I hope you can learn how to pull yourself out of the ditch you have ended up in by using some of my techniques. You have to be able to see that you are actually quite lucky.

Your life has a purpose and that by coming down with this disease - you have been given a new mission in life that is probably meant to be...

No religious talk regarding this - no matter what you believe - there has to be a reason we are here... There has to be a reason we were born a human being and not a dog, cat, insect, fish, whatever... No matter what we were born - we were born with a purpose that none of us really understands or knows.

We have to take what life has given us and make the most of it. Take it as an opportunity to learn something new (many things new) and to make a difference in the world.

I have no clue what it is I am here for and I find myself feeling knocked down so many times. I have never been more spritually down than I am at this point as I do feel quite helpless.

I need to evaluate myself and my life and just keep telling myself that I am lucky and keep forcing myself to see the good sides of life.

We have to keep moving forward and making our life worth whatever we can. I have been trying meditation and some Yoga as well but have not been too successful with that. I know it is a mind thing and I need to keep trying as I know many it has helped.

I have felt the sense that I am running out of will as well but I still have fight in me and since you wrote your story - you clearly possess the will to fight as well (otherwise you would not have written as much as you have).

I think you need some encouragement - but the encouragement might not be exactly what you were expecting (hoping for).

I do keep holding onto hope that I will get better at some point but that hope does wane more than ever recently. I hate that sense of a feeling and know I need to keep moving forward.

I hope that you can find some inspiration from what I am writing (if you can get through it all since it is pretty long).

All of my best to you and hope you can find the best tactic to help you get through the hardest times and stay focused on the fact that your life does have meaning - it just is not the same meaning you have had previously. There is some reason but we just don't know what it is... We were not meant to. It is life and thank goodness we have all of the benefits we do have... Just keep in mind there are so many out there who have it so much worse (even though it doesn't seem possible - it truly is).

There is a reason it is not a terminal diagnosis that wil kill you in a month or 2... What that reason is - who knows - but you may figure it out as you continue through this part of your life journey...

All of my best,
Sharon

Hi Ink, You're going through what I went through several years ago. I was just diagnosed with autonomic neuropathy, but I've been dealing with systemic lupus for 7 years. I was a full paramedic before all this started. It was all I had ever wanted to do. And I can't anymore. Instead of the helper, I'm now the patient. So, you find something else to want. No I'll never be a paramedic again, but I do focus on my sons, and on getting through today. There's a qutoe I found by a Buddhist Monk named Thich Nhat Hanh, "The past is finished. The future is uncertain. Only in the present can we discover the Miracle Of Life." In other words, focus on today. See the wonder of your children. Hear their laughter. See the wonder that you helped come into being. Maybe you can't do the things you used to. But that doesn't mean you aren't worth anything to those who love you. I know it's hard on you as a man, to realize your body is betraying you. But you are so much more than just a body. You have to find who YOU are despite the illness, and maybe because of it.
Good Luck
Cindbird

inkmark,
i hope you are doing better. none of us have given up on you. and i hope you r]are still out there somewhre in cyberspace. please feel free to pm me. i am pretty good at hepling to stay the course. but only if you let me. life is hard w/out dys. don't make it harder by isolating yourself. talk to someone.
just hoping you have found courage.
i tried pming you but you have it turned off. so i am here if you need to spue out the anger i feel is inside you. we are all angry at this stuff including myself. and even i have a pity party sometimes.

Hi Mark,

I have a very different perspective on faith being an atheist since about age 5 and a lover of science and all things supported by evidence.

Because we all live and die and that's pretty much "it" in my opinion each day in whatever form it takes is a precious thing. Also, my hope comes FROM science. You never know what is just around the corner to help us...or even heal us.

I was an athelete...climbed one of the world's seven summits before my "acute onset" and my life is COMPLETELY different now...relapse...remission...pain...bed ridden...up and around...weird symptoms all the time...out of nowhere.

You have every right to end your life at any point. It is your life...live it...don't. We all have that ultimate control although our government has yet to help with physician assisted suicide so it can be done safely, humanely. My decision to take each day as a gift may not be yours and I may change my mind about my own decision someday. I hope you will find something to live for instead but it is not my call.

What can you do if you are inclined to help yourself? Try an SSRI. You did not mention that group of drugs. Folks are resistant to trying them many times because they are used to treat depression BUT they also work on calming down the ANS and they WORK VERY WELL for some of us me included. also, the less surgeries, viruses, stress you can have helps (get your docs advice of course). You want to do things to calm down your nervous system not amp it up.

No, I'm not climbing but I am hiking. i'm writing again. I'm living and I'm giving you advice. Seriously, this syndrome gets VERY old but the good days come and make the "go round" keep on going.

I hope you find some joy....some peace.