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Posted

WOW interesting so far that we were all high acheivers........ sometimes I wonder if this didnt somehow contribute to my illness....I worked so hard....way too hard! always put in 110% and was always the one to stick it out to the end if there was a stressful project that just had to get done....or when it came to advocating for my autistic son, worked out like mad, multiple surgeries,etc.....maybe I just burned my nervous system out? the body can only take so much ....just wish I could figure out how to reset the system :(

Bren

Posted

Yeah, me too. Always the top achiever and top graduate at my school. I had a doctor ask me if I was an A type personality and I said what do you mean. (Act dumb and then see if you want to answer. Right?) He said well most doctors are type A - we want to know the reason for everything and can't accept just a simple answer. I answered him, well if that's a type A - I guess you can count me in. LOL! But, I can also, relax and take time to smell the roses and I don't let life pass me by - I try to live my life. And don't let anything be taken forgranted. Life could end tomorrow and I don't want any regrets. Love deep to the heart, hurt deep to the heart and find beauty in everyone and everything around me. (Sort of a romantic type, aren't I.)

Posted

Interesting... I was just reading an article about this (will think about it and try to remember)... And it stated how most people who suffer from any autonomic dysfunction are typically high achieves. They constantly are under pressure to get so much done.. And will get everything done at all costs. So when fatigue eventually overcomes us, our stress and overly developed sense of responsibility triggers an adrenaline response to get us through. So we may not feel as "exhausted" as we truly are before our disease truly develops and our bodies get used to the extra adrenaline, and as the disease develops- it ends up causing all kinds of extra problems. We push through the fatigue and it teaches our body to be extra sensitive to the adrenal reactions- therefore leading to the later symptoms: tachycardia, syncope, Anxiety, digestive, blood pressure, etc. Our adrenal glands wind up being severely taxed before the illness ever progresses to a severe state.

Gosh, I wish I remembered where I read this, but I'm pretty sure it was referring to P.O.T.S. specifically with hyper mobility and EDS type of illness. I just remember as I was reading it I was thinking : "They are writing about ME!!!!" I've always had symptoms autonomic problems and minor flares throughout most of my life, but as I grew up, even teen years, I always felt such a sense of responsibility that taking care of myself was the last priority. I always relied on that adrenaline surge (that I curse now lol) to help me get everything done.

Interesting how many of us have such a strong sense of responsibility and could be classified as Type A overachievers. I won't speak for anyone else, but this illness has devastated me emotionally. My life has done a 180 degree flip and I've gone from taking care of everyone else to relying on others for many of my needs. Giving up my independence as I knew it and not being able to be everywhere for my family and take care of them how I used to, has put me in a severe identity crisis and depression. I do not know HOW to live my life this way. I'm unable to walk and my mobility is limited to wheelchair and crawling. After so any concussions, brain function is of utmost importance to me- above all else. Actually had a nasty syncope spell today, while crawling, fell down and ended up with a very nasty concussion.... I'm pretty miserable and probably shouldn't even be on here... My head hurts so badly. I keep trying to ask myself HOW I can even begin to get my life back- A life back. My family is VERY supportive, tells me I AM there for them, just in different ways, let me tell you I have six amazing kids and a hubby who does whatever he can to make this situation as easy as can be. I have to find a way to try to re-invent my life, for now at least, and I will admit to all of you.... I'm really struggling. Physically, emotionally, mentally, cognitively, socially, spiritually.... All of the areas I always thought I had all together.... It seems like its all falling apart.

Enough about me... Interesting poll!

Jen

Posted

Now if all of us "over-achievers" could get us together is one room with a very interested Doctor. We could sit there forever until they figure it out. Sound like something we could do.

Seriously un-canny how similar even the personalities are.

Every job I ever worked I was at the top within a month, and wasn't liked very much for it. Giving 110%, not good enough, I gave 150% becaue I had to be the best at what I did.

Yup even if it meant hurting myself. Wound up in the ER once from working a 48 shift, taking a 3 hour nap, and then working a 36 hour shift. Got through the shifts, got to the ER in the closest city. Nothing wrong except exhaustion, dehydration, and a massive ear infection that I had ignored.

Other jobs, work all day 10 hours, and then on call 24/7 all on my own. Never got much sleep as I always heard the phone ringing even when it wasn't.

I had no limits. Other people would say no to the boss at work, and I would say yes when I shouldn't have.

Probably why we've figured out more about our disease than a lot of others too. I have a friend with MS who is completely ok with letting the doctors run his life. He follows blindly. He was diagnosed without an MRI and without a lumbar puncture. He says he feels better on the meds and that's all that matters to him.

Don't have any idea how he keeps going like that.

Like others have said above, the fact that I can't keep going like I used to, that I can't figure things out on my own, that I can't fix things on my own, that I need help with the most basic of things, is a very hard thing to come to terms with. I'm probably dealing with that part worse than the actual illness.

Hugs to all

Posted

This topic has come up before and is controversial - see link below, for example. I am an A type peronality and can see that many of the regulars here probably are - we are the type of proactive people that do tons of research, are extremely knowledgeable and want to help ourselves. However, other types of posters pop up often enough too. I have seen this mentioned in literature/articles , but not really sure the description fits.

Posted

Interesting points Charmed and Yogini... About how we research our disorders so thoroughly while I know many people with other serious illnesses who seem perfectly content to just the doctor's explanations and options. Great observation!

Jen

Posted

Trach, Really liked this article, thanks for posting it.

I think we HAVE to be proactive. If we don't find some answers, I don't think we're going to get a solution. It's good we're the way we are and intelligent people who have the brains (when we don't have the brain fog) to put together possiblities. Doctors just don't have the time to research enough for us. We are figuring out that we don't all fit into the same box and the variables are so great. We have to get doctors to take us serious and not treat us all the same way. I hope we are able to get the word out and get the public more educated. I think this is probably more widespread than we know and people are being mis-diagnosed with other things.

But, the post about feeling responsiblity and pushing ourselves despite ourselves --I whole heartedly agree with. I know in my case that is true too. But, in a way - we all are doing that in every day life ---because we have to. I tell my hubby all the time, if people really knew how much I'm pushing myself to do what I DO, do - they wouldn't believe it. Somehow, we all have the drive to continue on with our struggles and not give up. Even those of us that are having really serious and complex issues (Jen, you amaze me) find the strength to continue on and fight for whatever amount of life we can and attempt to have some quality with it. We all deserve a pat on the back and a "that a boy/girl". We're pretty amazing people.

Issie

Posted

Love, love love the reply, thanks! Which reminds me I need to send a thank you email to the Pittsburgh journalist for writing such an accurate article.

Again I think most of us regulars here are informed/persevere but I have been on the forum many years. I have seen plenty of people who don't meet this description at all. There are probably many people that don't even check the Internet in the first place. I really dont think POTS is connected to any personality type. I think it is important to distinguish it as such - if it is related to emotions/behavior, it gives docs a reason to call it psychological.

Posted

I wish I could find the link but someone on here had posted fairly recently an article about EDS and dyasautonomia. The doctor writing the article was describing how there was a possible link between the excessive sympathetic drive we have and how "high acheiving" so many of us were prior to illness. His thought seemed to be that the excess symp. drive was present prior to illness and then once we got sick it becomes a liability rather than a "benefit". Sorry I'm not describing this very well. I just thought it was an interesting connection between personality traits and our disorders.

I do know that a lot of illnesses tend to have "personalities" associated with them. As will all stereotypes not everyone fits that personality but it occurs frequently enough that people notice a trend in that direction at least.

Trach- Thanks for posting that article. Really appreciated it. Think most, if not all, of us can relate. At my most recent POTS specialist visit, the doc was saying "you have to listen to your body more and quit trying to push thru everything like you did before." Hard to do that after all these years of feeling like I couldn't trust my body because of all the weird messages it sent while docs insisted there was nothing wrong.

Posted

Interesting points Charmed and Yogini... About how we research our disorders so thoroughly while I know many people with other serious illnesses who seem perfectly content to just the doctor's explanations and options. Great observation!

Jen

Yeah I think the doctors call it somatic hypervigilence.

the general pattern is a patient that is used to being in control of many facets of their life and now has POTS presumes they can somehow 'work it out' and fix POTS the way they have with everything else in their lives.

Ive seen type A personalities associated with migraine, CFS, Pots, and most often of all with autoimmune diseases in general. I think it just reflects the fact that type A personalities are more likely to push for a diagnosis and pursue their own managment of the illness - but thats just me personally.

I know plenty of type A personalities that dont have an illness. Just my take.

Posted

rama,

Always so perceptive! I agree...the results of this poll probably reflect a scewed statistic. It is not surprising that the people that still struggle with this syndrome and use this forum actively are mostly Type A (as I am.) We push for dx, tx, new information...we want to get it done and knowledge is power, right?

This poll only confirms what I already knew...this forum is full of really wonderful, smart, assertive people who will not take POTS "lying down". :D

Posted

When we talk about the kids who get the syndrome - almost all of them are overachievers. But I wonder if these kids have more supporting parents who push the medical system for an answer. I wonder how many kids (and adults) are out there who do not have a support system/doctor to turn to?

PS I am glad you liked the article. Bobisdysautonomia is my favorite blog!

Posted

Chaos, I seem to remember reading something along those lines, too....speculation that perhaps it's the oddities in our nervous systems that cause us to push to 110% all the time. Sorry, I really can't remember where I read it, but it suggested that before getting really sick, we might get little adrenaline highs that we keep seeking after because we crash in between them...so if we get adrenaline surge after surge after surge, we can avoid the crash...until it take us out completely.

Posted

Chaos, I seem to remember reading something along those lines, too....speculation that perhaps it's the oddities in our nervous systems that cause us to push to 110% all the time. Sorry, I really can't remember where I read it, but it suggested that before getting really sick, we might get little adrenaline highs that we keep seeking after because we crash in between them...so if we get adrenaline surge after surge after surge, we can avoid the crash...until it take us out completely.

But, wouldn't that be more like "Adrenal Fatigue"? The adrenals are involved, but - I don't think many doctors have put much research into the adrenals with our issues. I don't think it's at all a bad idea to support the adrenals - but, that's not going to cure us. I've been supporting my adrenals through alternative supplements for over 20 years and I'm not over POTS by any means. I think it will exacerbate our problems, for sure.

Posted

Very Interesting Poll!!

Despite my best efforts at trying to stop myself....I come from a long line of extremely high achievers, insane perfectionism and a motto of no matter how good ya do ya can always do better. Live life in the fast lane, probably a stress Junkie. I reach for the stars and when i get there ive already dismissed the achievement and moved onto the next thing B)

The long line of this personality I come from (mainly women) comes with a long list of non descript ailments, neurological dysfunction and autoimmune disease. Multiple Sclerosis( my 23 yr old sister), Motor Neuron Disease(grandmother), Pernicious Anaemia (cousin), Chronic Fatigue Syndrome( mother and also ?POTS with her too!)....the list goes on! From generations back i.e my great great grandmother ( on one side) the women all (similar personalities) have had some form of neurological/autoimmune problem.

Must be a link somewhere....my theory is (im a midwife :rolleyes: i als go back to the roots!) the high stress hormones/brain firing of a person with this personality type may disturb normal chemical/hormone firing/levels in the fetal brain predisposing the baby to some of these problems later on in life?? It is not something that could be picked up on in the infant or quantified/tested for but the infants brain from the offset is firing to the same level as mums. On the job we als say whats happening for mum is happening for baby, if mum is tachy a baby will be too, same goes for high/low temps etc. Makes sense that the same theory applies with stress reactions.

Its vague but i would just love to do my own mini study on it sometime to see! :P

Posted

I am the youngest child of four girls.

My oldest sister (17 yrs older) is the only person who shows no sign of any medical problems. She was type A to the max. Graduated number one in high school, college, and medical school.

My next sister (15 yrs older) has a myriad of health issues mostly due to epilepsy, allergies, and undiagnosed ADD. Although this sister graduated from college, her epilepsy is very disabling and she is now on disability.

Third sister (5 yrs older and most active) has autoimmune issues, clotting problems, degenerative disc disease, migraines, pituitary tumor, gallbladder, and appendix surgery (removed), allergies, the list could go on. This sister is also type A too and is a RN. The strange issue is that both of her children have brain issues -ADD, ADHD, dyslexia, dysgraphia, and bipolar.

I used to be type "A" until my youngest broke me. I believe now it was a precursor to POTS. She rarely

slept and seemed to have "colic like" symptoms for years. She had meltdowns that I eventually understood meant she was getting sick. Thankfully those meltdowns rarely happen now. Both my girls have severe migraines and one has POTS. Both are type A - sometimes to their detriment.

After talking to different neurologists in the field and a cardiologist about my family history, the doctors believe my POTS is definitely a brain/autoimmune issue. When I was younger, my sister who is 5 years older and I moved 6 times in 7 years because are father was transferred. There is speculation that environmental factors contributed to our autoimmune problems.

Posted

At one point in my life I was convinced I was going to be the greatest physicist of the 21 century. I did so much activities before I was sick and even after I got sick I still struggled through thousands of hour long presyncope events, graduated B.S. in physics with honors and am applying to medical school this summer.

I would definitely fit the type A personality. I will find a cure for this thing, so I, others, and future others will never suffer from this again.

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