Do We Get Old?

[sue1234]

Eligamore--I have PROBABLY asked you this 10 times, but have they THOROUGHLY worked you up for a pheo? I mean, 24-hour urines EVERY year, CT scans, blood work, etc.? That high of a blood pressure even while lying down in ICU is not normal, unless something is driving it, and obviously being upright is not. Our POTS is, for the most part, postural, so if it swings while doing nothing by lying down, they really need to look for all possible causes. Having a pheo will leave the person dehydrated.

I wish for you that some doctor will get a hold of you and work you over head to toe!

[lieze]

I think the autonomic dysfunction is what is driving it.

[houswoea]

Me and my mother have been wondering the same thing because there is a lot of mono going around in my college. We were kind of joking about how they would have to admit me to the hospital because I would just be down for the count!

That's on a different track a bit. You were talking about concurrent conditions, I'm just saying.

I'm 21 and I have POTS. I also have tuberculosis antibodies (it's hard to explain what happened with that... usually doesn't mean anything but it didn't work that way for me) Unrelated, but came on at the same time as POTS. Oh yeah, and some people say I have narcolepsy, which is related.

[yogini]

I think if you have POTS and any other condition, there is more than good chance that they are related. Especially if they occurred around the same time or if there are any overlapping symptoms. It is hard to know whether POTS causes other conditions or other conditions cause POTS. Just not enough research at this point, but I happen to think it's the other things which either cause or trigger POTS - viruses, EDS, Lyme, mast cell, thyroid issues, pregnancy.

Fortunately, I think most people do not deteriorate in the long run "just" from dysautonomia, but only time will tell.

[HopeSprings]

It would be interesting to find out what happened to all those "neurasthenia" patients. I don't understand this illness - are there other illnesses like this that are not progressive, don't kill you, but make you absoultely miserable every day for the rest of your life? Bizarre.

[abnel]

Firewatcher, just wondering if the Poll can be tweaked for those of us who don't quite fit the criteria. I had a virus but then had gradual onset over 5 months before POTS hit me with full force. I would be interested to know if there is anyone else who had gradual onset after a major event.

[Ernie]

Hi,

In my family we get old. Some with POTS and NCS died in their 70s or 80s. We have 6 generations so far. I think the oldest was 84 years old with many other severe illnesses.

[Angelika_23]

Hi Lotusflower,

I had gradual onset after viral meningitis. It took almost 7 years to hit full force and stay. Before that, the symptoms would wax and wane.

Angela

[jennyg97]

I already feel old and have since I was 16 - 20 years ago. Being on medications normally seen in old people (like blood thinners), and having a pacemaker, and being the youngest in my dr's offices by several decades, I feel like I have old systems hiding in a young-looking body

That said, I think the poll results might be a little skewed due to the technology we are using to communicate. That is, I would venture to guess that people in their 30s and 40s are more likely to use online forums for support, whereas people in the younger demographics might be more likely to use newer technologies such as facebook and older demographics might be less up on technology as a whole and may not even consider reaching out through the computer. I'm not sure if this is the case in actuality - it's just a thought.

[Nikki]

I'm 23 years old, from Pennsylvania. I was diagnosed with POTS in 2009. I've always struggled with dizzines and balance problems but it never was as bad as it was in 2009/2010. I was stuck in bed or just in the house for at least a year and a half. I think for me, POTS was a sudden thing because even though I did have dizziness before, I never had a pounding heart, or chest pains and things like that until 2009.

At the beginning of this year, I was diagnosed with having a pseduotumor (I had the symptoms of having a brain tumor, but no actual tumor). I had optic nerve swelling and my vision in my left eye was very warped and I felt like I couldn't see straight half the time. The doctors didn't do anything for me though..and it eventually went away on it's own. Now the doctors I see talk like they're not sure that's what it was.

Any doctor I see anymore seems to think there is more than just POTS going on since my symptoms are so severe. I have an appointment at the University of Penn in Philly this October for an all around second opinion, so I'm really hoping this doctor can give me some answers..

Sometimes I sure feel like a 70 or 80 year old lol. Definitely not the typical 23 year old.

[Allene]

I am 21 years old.

I've had NCS since I was 13 but my dysautonomia symptoms didn't really start getting noticeable until I was 18. Since then it has gradually gotten worse, with periods of near-normalcy. I was diagnosed at 21 (in January of this year).

I have other problems that I do believe are related to my dysautonomia. I was born with an atrial and ventricular septal defect. I also have congenital mitral and tricuspid valve prolapse. The cartilage in my body is bad and wears too easily. I've had problems with my tendons being too lose in some places and too tight in others. I know connective tissue problems can be related to dysautonomia, so I think it's too coincidental for my tastes that I have connective tissue problems and dysautonomia.

I often worry that my gradual worsening will cause me to die at a young age :/

[cmreber]

I am 26 and had sudden onset of POTS. It's so weird because up until December of 2010, I was totally healthy. Hardly ever sick, super active: dirt bikes, snowboarding, mountain biking, motorcycle racing, surfing, hiking, kickboxing... you name it, I did it. Then, bam, out of nowhere, I suddenly had no energy and felt sick and out of breath. Then I was passing out and had crazy tachycardia to where I had to stay in the hospital for three days! Before I was on my meds I couldn't even walk across the room, but fortunately now I am on a beta blocker and have begun to get my life back. I don't have any other conditions as far as I know and every day I am working hard towards getting back to "normal", though some days that is easier than others!

It is so strange to see how much of the body is affected by dysautonomia though, which is rather scary to wonder what other parts of my body's system might be affected now or in the future. I think one of the hardest parts for me about this disorder is that I am so young and on the outside look completely normal...people look at me and go, "You're young and healthy so why can't you do so many things?" and it makes me feel a bit lousy /embarrassed sometimes because they just don't understand what is going on inside my body and how I (and everyone else with this disorder) truly feel every single day, especially on the bad days! I just keep optimistic and hope it will just get better and better, so one day I can look at those people and say, "you know what, there's nothing I can't do" lol... got my fingers and toes crossed anyway!

[toddm1960]

**** we lost our one vote in the 60 - 70 age range.....hope we didn't lose the person. I feel like I'm 80, does that count?

[lgtaylor100]

That's weird. I was the one person in the 60-70 year age group. I'm still here. Don't know how the vote got deleted.

Some people find it surprising that I got this horrible disorder only a year ago when I was 61.

[corina]

glad to still have you around lgail!

i was once told that there shouldn't be any patients above 60, so i happily replied "let's get 60 then". now i now better and am taking one day at a time instead of wanting to rush through life

i hear you todd, i've been feeling like 80 lots of times. in fact after doing cognitive testing some years ago they told me that the results fitted an 80 year old where i was just 40

i DO hope to get old though as i so love life!!!

[toddm1960]

Whew......I feel better now Igail, glad you're still among us

I used to tell everyone that I'm living my life like a 70 year old....until my mother and mother in law who are both 71 could out do me hands down. Saddly now I have to say I'm living (and thinking) like an 80 year old.

[gertie]

I've existed 68 years in spite of this illness. The thing that frightens me the most is that I've not been able to take meds for my Hashimotos thyroid, high BP, heart arrythmias, syncope, meniere's, arthritis, IBS, flu, strep throat & other infections. I know it's a miracle I'm still here. I try to never let the family know how miserable I am. I feel if you are able to treat your symptoms you will live a long life.

[lgtaylor100]

Todd - I am 62 and my 86 year old mother definitely has more stamina.

Alicia - I wish I could treat my symptoms effectively nothing has worked so far. I would love to be able to hide my symptoms from my family because except for my husband they are really having trouble wrapping their heads around this invisible illness.

Lynne

[sandymbme]

It is hard to imagine getting older considering what is happening to my body now. I am shocked at how my health has derailed, especially in the last year or so. A year ago I was convinced I would eventually go back to work and live a "normal" life, if I could just find the right balance of meds/lifestyle accommodations. I now know that is just not realistic. The breakdown of my body has been progressive and rapid, but I have more than POTS creating problems for me. Specifically, the fact that I have Celiac Disease has aggravated both my POTS and my EDS to a point where even the average daily tasks can be overwhelming for me. I actually worry about getting old, more so because I worry about what quality of life I can possibly have, given that I am only 36 now. I guess I will find out when I get there!

Sandy

[firewatcher]

I wonder if this also applies to us:

Intrinsic Aerobic Exercise Capacity Linked to Longevity

ScienceDaily (Sep. 30, 2011) — Aerobic exercise capacity has proven to be a good indicator of health. A recent paper in Circulation Research whose authors include researchers from the Norwegian University of Science and Technology's KG Jebsen Center of Exercise in Medicine uses a rat model to show that innate exercise capacity can be linked to longevity.

Low aerobic exercise capacity is a strong predictor of premature morbidity and mortality in both healthy adults and people with cardiovascular disease. In the elderly, poor performance on treadmill- or extended walking tests indicates proximity to future health decline. In order to test the association between aerobic exercise capacity and survivability, a rat model was made through artificial selective breeding.

Laboratory rats of widely varying genetic backgrounds were bred for low or high intrinsic treadmill running capacity. Rats from multiple generations were followed for survivability and assessed for age-related declines in cardiovascular fitness, such as peak oxygen uptake, myocardial function, endurance performance and change in body mass. We found that the average lifespan of rats with innate low exercise capacity was 28-45% shorter than for rats with an inborn high exercise capacity. Likewise, the peak oxygen uptake measured across adulthood was a reliable predictor of lifespan.

As they transitioned to old age, rats with an inborn low capacity for exercise had worse cardiac health by multiple measures (left ventricular myocardial and cardiomyocyte morphology, mean blood pressure, and intracellular calcium handling in both systole and diastole). Moreover, rats with high innate exercise capacities had better sustained physical activity levels, energy expenditures, and lean body mass with age than their low-capacity cohorts.

Since the rats came from a wide variety of backgrounds, the results provide strong evidence that innate capacity for exercise can be linked to longevity, thus aerobic exercise capacity can prove useful in future exploration of the mechanisms behind cardiovascular disease.

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by The Norwegian University of Science and Technology (NTNU).

Journal Reference:

L. G. Koch, O. J. Kemi, N. Qi, S. X. Leng, P. Bijma, L. J. Gilligan, J. E. Wilkinson, H. Wisloff, M. A. Hoydal, N. Rolim, P. M. Abadir, I. Van Grevenhof, G. L. Smith, C. F. Burant, O. Ellingsen, S. L. Britton, U. Wisloff. Intrinsic Aerobic Capacity Sets a Divide for Aging and Longevity. Circulation Research, 2011; DOI: 10.1161/CIRCRESAHA.111.253807

[MomtoGiuliana]

This was a little blurb on yahoo yesterday that seems related to the above. However, I think there are so many factors involved in predicting longevity, that no one should despair, by any means, because of any one factor seemingly stacked against us. I know there are members on here with grandmothers with dysautonomia living into their 80's, for example.

Faster walkers live longer. University of Pittsburgh researchers crunched numbers from nine different studies including almost 35,000 subjects ages 65 or older. The result: For each gait speed increase of 0.1 meters per second came a corresponding 12 percent decrease in the risk of death.

The average speed was 3 feet per second (about two miles an hour). Those who walked slower than 2 feet per second (1.36 miles per hour) had an increased risk of dying. Those who walked faster than 3.3 feet per second (2.25 miles per hour) or faster survived longer than would be predicted simply by age or gender.

A 2006 report in the Journal of the American Medical Association found that among adults ages 70 to 79, those who couldn't walk a quarter mile were less likely to be alive six years later. They were also more likely to suffer illness and disability before death. An earlier study of men ages 71 to 93 found that those who could walk two miles a day had half the risk of heart attack of those who could walk only a quarter mile or less

[sandymbme]

If speed is a determining factor in longevity I am SOOOO screwed! I remember in junior high we had to run/walk a mile in under 12 minutes. I was the last to finish, and could not do it in less than 12 minutes. Which everyone found shocking because I was so very thin, even back then. (the only time in my life I have come close to "normal" weight, and not underweight is when I first got seriously ill in my thirties. I gained 30 pounds in about a year and a half. My family was thrilled. I lost that and more when the Celiac kicked in at 35. I am now back to struggling to keep weight on, as I have my whole life.) I guess the expectation was that I must have a very high activity level, and thus be able to zip around the track, because I was thin. But I have always tired very easily. With the effect my EDS is having on my joints, I am praying very, very hard I will be able to walk down the aisle when I get married next year.

Sandy

[juliegee]

Do not lose hope. My grandma Josie is almost 94 and going strong. She's not formally DXed, but displays all of the symptoms. She has a long history of syncope, migraines, hives, etc. She's fiesty & fun. Scrabble, puzzles, and reading are her passion. She's living proof (with loving care) that we CAN make it into our golden years

[janiedelite]

Thanks for sharing that, Mack'sMom! Sounds like a good image of the "golden years"

[icesktr189]

I was a caregiver for a woman who had POTS and OI. She was 90 when she died! I know she had it for at least 10 years too.