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Your Cause Theory Guess


Guest 12StringANSGuitar
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Guest 12StringANSGuitar

I just wonder what each of you think was the causal factor(or factors), that wound up effecting your ANS system?

I've mentioned mine in two other threads(appendicts removal, hit to peak of my head). These are guesses on my part, but I'd like to hear your own.

Also, intense stress over a multi year period is probably a good factor in my experience.

thankyou, maybe we'll find some common ground

Jeff

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There are alot of us who have proposed a hormone theory, based on the fact that some developed this during or after pregnancy. I starting having symptoms of dysautonomia during the 4th month of my pregnancy. I wasn't diagnosed until my daughter was around 10 months old. Some women don't get symptoms until after birth. Anyway, my symptoms only worsened after giving birth and continued to be severe while I was breastfeeding. Also, my symptoms now seem to be worse during my periods every month. But, this is nothing more than a theory and there isn't much info. to back it up.

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Hi..POTs we believe started at birth..then my more frequent sysmptoms began to start right before I began my menstrual cycle when I was about 11-12 yrs old. and then became totally full blown after I neck injury and a case of bronchitus.. at the age of 19..and has been severe since then..

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For me it was undiagnosed Lyme Disease as well as a predisposition for POTS b/c my father and sister suffered from Vasavagal reactions.

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Hi

Mine also started during my pregnancy. I was actually at my first birthing class. I had a full blown typical episode. My poor instructor was freaking out, as well as my husband, as I layed there unable to move or speak. They rushed me down to the ER and were actually contemplating an emergency C section!!!! Thank god my husband wouldn't let them.

I wasn't diagnosed until 3 years later :) !! This year makes 18 tears of this :)

Hugs

Sue

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i don't think i'll ever know 100% the way different things factored in for me, but the "big player" seems to have been a bad case of mono at a young age (i was 11). and then triggered to different levels of severity over the years by donating blood (pre-diagnosis), other viruses (viral meningitis & one unknown), and perhaps a car accident??? (big question mark on this one...i'm not sold).

as a more direct "cause" we now know that i have neuropathy. the cause for that is proposed to be autoimmune. as for the cause of that....

if we all had the certain answer to this question chances are we'd be a lot further along in terms of treatment. it wouldn't solve everything, but it sure wouldn't hurt!

:-)melissa

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Not sure if it was my bad case of mono at 15 (like sunfish) or a series of serious chemical/mold exposures several years later at 17.

My symptoms became debilitating this year at 24yrs-- after a bad virus that lasted 3 months.

I too am always worst right before my period...so the hormones definitely play a role in my case.

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possibly autoimmune disease issues brought it out, because they nearly coincided with real onset of symtoms. But, I'm probably genetically predisposed, mom and sister on beta blockers, daughter showing signs.

BTW, welcome, I haven't really been posting much for the last couple of months because I've been preoccupied with the above mentioned autoimmune issue which seems to have "blossomed into a different flower".

Ariella

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I don't know. I have always gotten lightheaded especiaaly when standing up (everything turning black). Fainted once. I started gettin miagranes when I was working in a lab. The fumes from certain solvents would trigger an attack with miagraines, feeling like I am going to pass out. I quit and for 2 years I felt terrible and never figured iit out. After I had my child i had a terrible time--so much pain, neck pain -did have a c sect, but it took me forever to recover, and I think now that this probably was going on. Then, car wreck--started it up big time, and after continuing to get treatment for injuries, and stuff did not add up, I was diagnosed (it was not nearly that easy, just briefly what happened). I had so many weird symptoms, and no one could explain them. During all this no one knew my heart rate was high except when we called the ambulance and it was high--they just said probably anxiety. No one ever knew until i figure out that it was high all the time that it was high. Funny thing was was that I had no anxiety especially from the wreck as it was minor.

So I have events in my life that seem to go with me feeling bad-"triggers" and never knew, but I think i have had this forever as I have always been a little different--hypersensitive, low exercise tolerance, lightheaded. There is a family history on one with MVPsyndrome.

I was told that the people who get POTS are ones with small hearts--weird but could explain the mostly women get it thing, as men generally have larger hearts. I wish we had a dr to moderate this site. I would love to get a hold of all the research papers and see if they explain this stuff better. Anyone do research on this? I would --just time issue-I have a child. :)

Jennifer TX

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For my husband it is genetics as his identical twin brother has similar but more severe symptoms. We tend to refer to 1998 as the start of his full blown symptoms after having Epstein-Barr virus BUT his brother's symptoms also escalated about 1 year later without ever having the virus. So, it's probably an age related thing with them.

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jennifer -

i by no means want to give myself too much credit re: my knowledge on the subject, but i've read a lot of the research papers/texts, been to a conference, and seen/spoken with several of the specialists and have never heard of people with "small hearts" being more likely to have POTS. i'm not saying it's not a possibility, just that it's not one of the prevalant theories. of course the only known with dysautonomias may be that there are lots of unknowns, so take that for what it's worth :(

hope this helps,

:) melissa

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The cause of POTS has always been my burning question too. My pregnancies triggered my POTS, but no-one can tell me why pregnancy would have triggered the POTS and why my symptoms have lingered. I wonder if the trigger for most of us may be a disorder of the immune system. Dr. Low at Mayo told me that most POTS patients get better during pregnancy, but I and some of you have gotton worse during pregnancy. My friend, a pediatrician who has rheumatoid arthritis, tells me that a third of rheumatoid arthritis patients get worse, a third get better, and a third remain unchanged during pregnancy. Similarly, POTS patients also have a variable response to pregnancy. Our immune system alters during pregnancy.

Our POTS gets worse during colds or flu. Most cases of POTS are triggered by the flu.

POTS is at least associated with known immune disorders. My friend with rheumatoid arthritis has dysautonomia symptoms like me and responded to a beta blocker.

I would love to do research on POTS. I have so many ideas. It just won't happen because I feel like I am just holding my head above water with 2 small kids, practicing as a neurologist, and the weight of POTS. My friend has a Phd and is paraplegic. He is doing research on spinal cord injury. That has to provide so much satisfaction. As my friend says, I can at least pose my questions/ideas to key researchers and maybe they can be inspired. I plan to go to the annual American Academy of Neurology meeting every chance I get, and pepper the experts with questions/ideas. I asked the most questions at the last meeting this past spring.

Karyn

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Mono at 14, problems after that. Then disabling in 2002 after another virus. It was all going to be better in 10 days.....

So I would say viral. But then, both of my parents have pacemakers and both of my sisters have arrythmias so, maybe a combination??

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Menstrual cycle- the first syncope I ever had was aged 12, and exactly 7 days before I began my periods.

I'm also at my worst in the run up to, and inthe first few days of, a period.

Flu and viruses really set my ANS off though- to the extent that I've ended up with a wheelchair for the off days

My cardio acknowledges that there is a definite hormonla link with palpitations and fainting generally....

all v interesting. Anyone know if any studies have been done?

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Well i'm not sure how my problems started, My pots problems started july 2003, out of the blue. I don't know what really brought it on, probably stress had something to do with it and i was sick alot that year. I was almost 25 when it started and was in the middle of a big transition. i had been working with a church plant trying to start a youth ministry.

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Hi

I still wonder if an immune system alteration could tie all of our triggers together. Physical and emotional stress lowers the immune system. Hormonal changes such as during pregnancy and menses are stressful to our bodies. Our immune system is altered by infections such as mono, flu, etc.

Karyn

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