Worst Case Scenario....

[firewatcher]

Alright, I know this is a morbid topic, but we've all thought it at one point or another. Given the abnormalities and misunderstandings of POTS, and knowing that our final outcome will always be death (by car accident, drowning, head trauma, lightning strike or some yet unstudied medical complications) what are the logical, practical, feared results of our "syndrome?"

Obviously, POTS can be the presenting symptom of Shy-Drager or Multiple System Atrophy where there is a slow decline in autonomic functioning. Heart failure has been mentioned in another thread. Kidney failure or pituitary death float around in my crystal ball of symptoms.

For those of us who have been life-long dysautonomiacs, or have had it 20 years or longer, what complications have you encountered? Are there any common threads of progression?

On the flip side, for those of us who have been life-long dysautonomiacs or had it 20 years or longer, has there been improvement? Any rays of hope out there? I suspect that my mother and grandmother have some degree of dysautonomia (migraines, fainting, exercise intolerance and BP fluctuations) and my Grandma just celebrated her 84th birthday and is going strong. I know one member went from bedbound to ballroom dancing!

[arizona girl]

Oh I guess there will always be a part of us that wants to know how will go!

I must say that the last two years with a car accident, colon rupture, surgery a year later, and the pervy doctor, I had lost faith that the medical system would keep me safe, I thought I wouldn't wake up from the surgery. I really thought I might die this time with so many close calls. After I did wake up, my husband was like well your still hear! Then I realized that if god was ready to call me home he would have already. I realized then that I must still be here for a reason and to do his work. It also became very clear to me that we don't have to be healthy for him to work through us. Just look at how we support each other here on this forum.

As far as which way medically I would go. I have mild left ventricular heart dysfunction, but we know it's there so hopefully we keep it from getting worse. My autonomic dysfunction has been slowly getting worse. The scariest is when I don't feel like my lungs are filling when I breath. I think that would be a scary way to die. So I'm happy to say the latest treatments have made that better, my blood pressure is better too. I'm hopeful that treating the pots as an autoimmune disease will prove curative or treatable. That would be so great, cause I do want to live fully while I'm still here. I dream of dancing again. I loved partner, swing and yes disco dancing so much.

I've finally understood that while my body gets in my way, it is not who I am, it is the shell that gets me around and one day it will fail, but my eternal life has already started and I will go on in joy. That has been giving me some peacefulness.

[MomtoGiuliana]

I have thought about this many times too. I think I have to go with the conventional wisdom presented by my specialist--that this is not life-threatening or life-shortening--just life-altering. He has patients in their 60's and older who have had it all their adult lives. Yes there is much unknown, but this is clearly not like diabetes or heart disease. I think most of us are likely to die of things unrelated to autonomic problems.

[lieze]

My biggest fear was my heart just stopping.

That was the feeling I was getting but for the most part that doesn't happen anymore.

I also get the feeling that I'm not getting any air at all and it is a horrible feeling.

I just try to be thankful for everyday.

I think that is where I am right now.

In trying to improve my overall situation I'm experimenting with meds right now and it's a bit uncomfortable.

I guess if none of it works I can go back to my tiny dose of Xanax and trying to stay strong by eating well and drinking lots of fluids. I was at least partially functional this way.

[firewatcher]

Thanks for admitting this ladies! I've had several fears, from brain tumors to rapid kidney failure, so many in my road to diagnosis that I'm all feared out. I take all the doom and gloom and look at it a bit cynically now, but cautiously research for confirmation. I do believe that depending on the root cause, dysautonomia can be ultimately fatal. Heck, life is ultimately fatal! Changes brought about by cerebral hypoperfusion, hypoxia, brain chemistry and body organs due to sympathetic overdrive are all possibilities. Way on down the road I hope, I fear that I am looking at a severely reduced quality of life in a wheelchair due to the drugs no longer working, or that final "unknown other" diagnosis being a major organ or gland just quitting. But for now, I can't spend the energy worrying about it. I can only treat what is going on now and try to live what life I have to the fullest, just like every other person on the planet.

This being said, by what mechanisms could POTS be fatal, other than passing out and smacking your head, or fainting in a pool?

[mkoven]

I have to tell myself that I'm (fortunately) very bad at predicting the future. Things that I was really afraid of happening never have. (My joints were so bad a couple years ago, and so was my ans stuff that I could barely make it down the hall. I feared I might be in a wheelchair all the time. But now I can walk two miles and be okay, and only rarely have a wheelchair in the car as a backup.) And things that I could never have imagined have happened.

[MomtoGiuliana]

Yes, certainly there are fatal forms of dysautonomia.

I think we can be pretty confident that in many to most cases POTS is not progressive.

I think I worry most about how it will interact with other conditions I might develop as I age. For example, diabetes. Two of my 3 sisters have type II now. One is 100 lbs overweight, but still, it is clearly in my family.

[summer]

I don't spend much time thinking about this, but I do have moments...

If I have a fear about the "end" of my POTS, it is probably having a stroke. The idea that there is so much vasoconstriction going on in my body (I think I have low-flow POTS), including my brain, does make me think that I have to have an increased risk for this. The fact that I actually have trouble thinking because of decreased blood flow makes me think that there could be damage eventually...like dementia, or stroke.

There... I've said it... It can be difficult to acknowlege our fears, but I'm glad you brought this up, Firewatcher. I think we all have fears and even though we don't want to dwell on them, I think it is good to acknowlege them.

Summer

[futurehope]

Maybe it's because I survived a cancer diagnosis at 20 yo, and I'm currently 58 yo, but I honestly do not have any fear around this illness at all. I figure we all die of something, so I really don't think about it. And I'm kind of glad the doctors do not know enough to give us a prognosis, because many times a prognosis will set up a false expectation. I just "plug away", to the best of my ability, and I'm thankful for the body parts that work okay.

[MomtoGiuliana]

I agree with no negative prognosis ALL you can do is hope for the best--and that can be very powerful.

[Maxine]

My biggest fear is the C word---cancer.

One day we had a support group meeting, and we were all complaining why POTS is so misunderstood, and didn't get the attention it deserves.

We had a guest speaker, and stupid me said maybe we should all shave our heads bald. We all know many cancer patients go bald from chemo. Well it turned out his wife died from an aggresive form of breast cancer. I felt like an idiot. After watching my mother & brother die from cancer----especially the way my mother died, my fears have really come to light, as cancer is an ugly death. I don't know how I would ever handle chemo, I'm certain this would kill me before the cancer would. I pray I never get cancer, and the testing I will have at the Cleveland Clinic will be a very emotional and fearful time for me. I will be having the colonoscopy done there, and possibly endoscopy to visualize the larger diverticuli in small intestine.

I always have discomfort in my gut, but not much pain. When I get my mid thoracic spine pain, the pain spreads around to the front like a band around me. this really messes with my head, and all the pain my mother and brother went through come to my head. This discomfort combined with the spine pain has been a nightmare that has taken my mind to very dark places. I'm also struggling with the fear of the right vertebral artery in my head exploding from overload making up for the misisng one on the left, and so far not one local doc has taken this seriously, but a couple from out of town have----enough to know the cervical instability near my cranial area caused something to happen to this artery. With EDS this can't be good, and I stated this to an orthoopedic surgeon, and he agreed----he said, "no it can't"! Meanwhile----crippling thoracic spine pain, and with this, my POTS is a lot worse. My inability to handle gravity has gotten a lot worse.

My mother in law has been in the hospital, and this is the closest hospital to my house. I sit an watch the incompetence in this hospital, watching all the docs pass the buck around, and fear for the day I might have to be rushed there when my body decides to fail me. I'd be a goner----doomed!

So many of us have to nearly direct our own medical care, as there's so few medical professionals who "get it".

Just yesterday I couldn't stand in the shower, as I could feel the blood fall like water into my legs, so I curled in a ball on my knees on the floor of the tub. My husband is on vacation this week, and I asked him to come and help me. He grabbed the shower head, and I washed my hair on the floor of the tub. Then all day when I tried to walk any distance in this same hospital as all of us family members had to babysit the doctors there, I felt gravity pulling me down. My brain seems to be the strongest part, as I can see my body fail before me, like I'm standing outside of myself watching-----legs getting weaker, and I use all the mind power I can muster to keep standing.

All of the above is rolled into one big nightmare, and I'm trying to cut one part of this nightmare little by little. I just need a break, and getting past the fear of having cancer will take off a big load. I'm so afraid, that I don't like to type the C word. Ironically, my brother's hair actually grew from his chemo. He was balding through the years, so he was very proud of his hair, and had a comb with him at the hospital when he was nearing the end of his life.

Maxine :0)

[ramakentesh]

My only concern with POTS is that it becomes progressive in my case because I have other progressive issues (ankylosing SPond).

I think generally if you've had POTS for longer than 5 years without progression its probably not life threatening - but it probably puts strain on your body trying to deal with the blood flow abnormalities and relative hypoxia.

But its probably lifestyle challenging more than anything else.

I know when i fluctuate that when im bad with POTS it actually has an impact on my mental state a bit - sometimes I worry about everything, cant deal with stress and rumenate. When I start improving a worry far less and stuff.

i worry about my mental health more than anything else - LOL

And yeah I predict a stroke at some stage when im an oldie if its not cured by then.

[vemee]

I have a slight concern that the high norpinephrine levels are causing damage. There is a rare type of condition called takosubo cardiomyopathy that they think can be caused by high levels of norepinephrine but I haven't read what levels are considered high enough to cause this. Like I said it is rare and I am more concerned about being struck by lightning on a sunny day; its possible but unlikely.

Real concerns center around low perfusion to the organs such as brain and kidneys. I wonder if there is some kind of slow motion damage going on from blood pooling and not circulating. Now I am even more concerned about blood clot due to pooling. I have a genetic condition not related to pots called factor 5 Leiden deficiency and excess factor 8 which causes me to clot real easy. It was discovered after I had a pulmonary embolism. Pooling and factor 5 do not go together. I am on blood thinners which should help as long as my warfarin levels are consistent. However, this is a fairly new found condition and I had assurances that it is nothing to worry about. My daughters also have this condition and are not on blood thinners because they have not had a clot yet which is the protocol. My dad also had this, he was tested a few years before he died and was not put on blood thinners because he had not had a blood clot. His sister's doctor told her she did not need to worry about it so she was not tested even though she has children and grandchildren. So I was comfortable with the assurances that the ones not on blood thinners would be ok if they just moved their legs around on long trips and don't take birth control and talk to the doctor if they get pregnant. My dad died this spring from complications caused by a hyper coagulative state which was caused by factor 5. He did not have the big clot but microclots that caused both adrenal glands to fail. His dad had a history of thrombosis throughout his adult life and had a sudden death. Hopefully the warfarin will prevent this in me but I do worry about my daughters.

[scarfgirl]

I've had so much improvement lately that I don't worry about it so much, but back when I seemed to be in constant decline (one step forward, two steps back) my worry was that I'd just keep slowly but surely getting worse and worse until I ended up kicking the bucket to pneumonia in my 40s. That I'd get so weak and tired that my body would just completely shut down one day. No idea if it was a realistic fear or not, but it at least SEEMED that's where I was headed.

[dakota]

One of my daughter's bad symptoms is visual changes. Even on a good day, she has spots continually, but on a bad one, it's spots, stripes, sparklies, etc., all of the time, not just from standing, but even sitting. We assume this is from lack of blood flow to the upper body parts. If that is true, then the brain is also not getting enough blood. She wondered if this could cause permanent brain damage. How long can the brain run on a shortage of blood and not be permanently affected? Given the intelligence level of the people on these boards, I would say we don't need to worry about that -- there are obviously some very bright people here. But clearly that is something that my daughter worries about.

[issie]

One of my daughter's bad symptoms is visual changes. Even on a good day, she has spots continually, but on a bad one, it's spots, stripes, sparklies, etc., all of the time, not just from standing, but even sitting. We assume this is from lack of blood flow to the upper body parts. If that is true, then the brain is also not getting enough blood. She wondered if this could cause permanent brain damage. How long can the brain run on a shortage of blood and not be permanently affected? Given the intelligence level of the people on these boards, I would say we don't need to worry about that -- there are obviously some very bright people here. But clearly that is something that my daughter worries about.

I had this once when out of town and rushed to the eye doctor. I thought I was having a retina detachment. He said it was a silent miagraine. A miagraine without the headache. I have since had the miagraines with the headache. This time though, it was silver stars - sparkles. No pain.