Poll: What Stressor Happened In Your Life Prior To Your Pots ? (trauma Or Viral / Bacteria)

[Guest GaryRN]

I'm still plagued to try and figure this out. When you look at what causes POTS, they think it is due to an unknown Viral or Bacterial illness, or occurs after a Trauma.

Personally, I theorize that whichever of the above took place, there must have been some sort of immunosupression taking place as the only thing that trauma and virus have in common is that they both can cause tremendous stress on the body.

It is well documented that stress on the body, no matter what form can lower the immune response. So, I'm just curious if everyone could respond and keep it short so we can see all the answers easily. I'll start:

I lost my brother to lung cancer in 12/3/2006. We were 18 mos. apart in age and best friends. His death was a total shock as he was responding to chemo, and going to work every day. He had an internal GI bleed as a result of a side effect of one of the chemo drugs he was taking, so this came as a big surprise to everyone. My symptoms started shortly therafter and I had to go out on disability in 3/13/07, just 3 mos. after his death. Symptoms started as free floating anxiety, no drug could get it under control, then came shortness of breath sometime with and without anxiety, the attacks would last anywhere from 1-3 hours and sometimes occurred while just sitting in a chair. Next came the tachycardia, and then all 3 together. Thats how I got my POTS. How did you get yours ? Prior to my POTS, I realized I had chronic Lyme disease confirmed through specialized testing and diagnosed by 2 different MD's. POTS came on strong while treating the Lyme and not before.

Gary

[valliali]

mine came on EXACTLY like yours. first came anxiety, then panic, then shortness of breath/chest tightness, then tachycardia. that developed over the course of a month or two, then it seemed to suddenly snowball and i accumulated many more symptoms.

i have no idea what caused mine. in fact, i haven't even been diagnosed with POTS, just autonomic dysfunction. my first cardiologist called it POTS, but i did not have a positive tilt table test for it, but i did have a positive tilt table test in that it caused an abnormal heart rate. i see a POTS specialist now, and she does not really seem to think i have POTS either. but i have no other explanation as of yet, and i do know that i have dysautonomia.

mine started two weeks after i returned from living in rural africa. i was not sick, nor was i stressed at all. i felt great. i was living in maryland, and do wonder if i wasn't bit by a tick at that point. my doctors don't seem to think i have anything from africa. i also had started the birth control pill about three months prior, so i'm not sure if that could have been the culprit either. otherwise, i have NO freakin' clue. i have always been healthy as an ox, and never ever had any signs that i was prone to becoming sick like this. it just seems so sudden and out of the blue. i am wondering if anyone else feels this way as well.

I'm still plagued to try and figure this out. When you look at what causes POTS, they think it is due to an unknown Viral or Bacterial illness, or occurs after a Trauma.

Personally, I theorize that whichever of the above took place, there must have been some sort of immunosupression taking place as the only thing that trauma and virus have in common is that they both can cause tremendous stress on the body.

It is well documented that stress on the body, no matter what form can lower the immune response. So, I'm just curious if everyone could respond and keep it short so we can see all the answers easily. I'll start:

I lost my brother to lung cancer in 12/3/2006. We were 18 mos. apart in age and best friends. His death was a total shock as he was responding to chemo, and going to work every day. He had an internal GI bleed as a result of a side effect of one of the chemo drugs he was taking, so this came as a big surprise to everyone. My symptoms started shortly therafter and I had to go out on disability in 3/13/07, just 3 mos. after his death. Symptoms started as free floating anxiety, no drug could get it under control, then came shortness of breath sometime with and without anxiety, the attacks would last anywhere from 1-3 hours and sometimes occurred while just sitting in a chair. Next came the tachycardia, and then all 3 together. Thats how I got my POTS. How did you get yours ? Prior to my POTS, I realized I had chronic Lyme disease confirmed through specialized testing and diagnosed by 2 different MD's. POTS came on strong while treating the Lyme and not before.

Gary

[iheartcats]

I sometimes wonder if a lot of us are all predisposed to POTS genetically and something 'turns it on' - I think there has to be a reason some people get it and others don't have illness/trauma.

Anyway....

Mine really kicked in the summer of 2007. In February 2007 I had the *worst flu* I ever had. I was at work and two hours later sick beyond belief and had to go home. I couldn't even think and just felt so sick I couldn't stand it. On the way home, I saw a guy get hit by a car and fly through the air and had to call 911. I was so ill they got my number and sent me on my way. There was nothing else I could do at that point.

I was so sick and so traumatized I went home and went to bed.

POTS symptoms came shortly after and worsened by summer. I think it's a bit weird this would have a connection (Flu + seeing the accident = POTS Trigger) but I guess weirder things have happened.

[janiedelite]

My POTS is caused by small fiber neuropathy. My mom has small fiber neuropathy (and Carcinoid Syndrome). Neither of us have a definite cause of our SFN. Mayo says it was triggered by my mono in 6/06. I had my first tachy/ER episode 10/06. Chronic frostbite and nausea started the next month. Itching/burning of my skin started 11/07 and worsened in 6/08, when I really noticed the chest pain, nausea, fatigue, constant tachy, etc.

Other possible stressors: my mom came out of remission for carcinoid in 2005, brother's wife had multiple affairs in 2005, bad car accident 9/06 followed by hip surgeries 6/07 and 1/08. I agree with Cat Lady... I think my mom and I are genetically predisposed to the neuropathy that caused my POTS, and the mono/accident/surgeries/etc triggered an autoimmune response against my small nerve fibers. Mayo says I might recover. I hope so, but I'm also trying to live fully within my limitations.

[Rachel]

I have POTS, but I never had a bad virus, bacterial infection, or trauma. I do have hypermobility type EDS, which is known to cause POTS, but due to the severity of my symptoms my doctors don't believe that EDS is the primary cause of my POTS. I don't know exactly what has caused my POTS, but it definitely wasn't trauma, an infection, or a virus.

Rachel

[ajw4790]

Hi,

Your post reads like all people with POTS had a stressor that caused POTS (trauma and/or bacteria/viral infection). There are many people on the board that this is not the case for, like Rachel said. There are many of us it is genetic, and not in the we have a genetic tendency towards it and a stressor triggers POTS. There are some of us who have other conditions that we were born with that results in POTS. For many of us it is a fact of life, and we have to work to treat the symptoms. They do not know what causes my SFN. I have EDS, which adds to the blood pooling problem. But, for those like me, we just don't know, and according to drs. we may never know, and have to work to treat the symptoms. That is why I do not spend much time or energy looking for a "cause". It is what it is...

[dsdmom]

I would fall into this category as well - bacterial infection & trauma. Gave birth 11/06 followed by several life threatening complications and surgeries and infections - I was emotionally and physically traumatized. Then 12/06 the breathing issues, panic and tachy started.

[juliegee]

Gary,

Your immunosuppression theory is particularly interesting to me as I have actual numbers to illustrate the dive mine is taking. My last bout with POTS began shortly after gallbladder surgery in 2007. I became very ill- couldn't eat, and was plaugued with severe nausea and lightheadedness, blood pooling, etc. My allergist/immunologist has been following my immunoglobulins. My IgG was in the low 700's and has plunged to below 500 today. (750-1,600 is normal) This has been inexplicable and so far, he's just following the numbers.Tthe only "treatment" he's talked about is IVIG- just a thought at this point. I know I'd react horribly to it. If I have an autoimmune response to almost everything, how in the world could I tolerate donated blood??? Wonder if anyone else has documented their immune decline?

Julie

[erikainorlando]

Hi.

Good topic! I had a virus in Sept 08. Not a terible virus but it ws persistent and my doc kept giving me antibiotics. I also was under terrible stress at work and single mom of two active kids... I just never felt right after the virus. I kept going to docs... no real panic feelings (although the docs kept saying painc attack??) just felt like I couldn't breathe when I would stand for long periods of time or moved much. Always felt so sick after movement.

It wasn't until Jan and I couldn't walk 20 ft. without shaking and gasping for air that they determined my hr was off the chart.

By the way...this is the 2nd time for me tht my body has produced an abnormal response after a virus. I got Guillain Barre in 2001 after a similair virus.

Erika

[samannran]

I didn't have a trauma, viral, or bacterial infection prior to dysautonomia. I've always had it. I believe, and my doctors believe, that mine is genetic. My grandma had my symptoms for years and never was diagnosed.

[Guest GaryRN]

Hi,

Your post reads like all people with POTS had a stressor that caused POTS (trauma and/or bacteria/viral infection). There are many people on the board that this is not the case for, like Rachel said. There are many of us it is genetic, and not in the we have a genetic tendency towards it and a stressor triggers POTS. There are some of us who have other conditions that we were born with that results in POTS. For many of us it is a fact of life, and we have to work to treat the symptoms. They do not know what causes my SFN. I have EDS, which adds to the blood pooling problem. But, for those like me, we just don't know, and according to drs. we may never know, and have to work to treat the symptoms. That is why I do not spend much time or energy looking for a "cause". It is what it is...

I didn't mean anything by looking into this. I havn't seen anything in the literature that suggests genetics plays a factor into POTS. Everything I read talks about a trauma, virus, or unknown bacterial infection that occurred first.

Gary

[sue1234]

Mine started within 4 months of my family evacuating for Hurricane Rita(occurred 3 weeks after Katrina). It was very stressful for about 10 days, when our electricity came back on. I don't know if that was a causative problem or just coincidence. I know mine did NOT come from a viral infection, as I had not had a cold for 9 years before this(I just had my my first cold this past winter after a 12 hiatus!). Bacterial infection is a possibility. I have had what seemed like bladder infections a few years ago, treated with strong, bad antibiotics. Maybe it was the strong antibiotic that messed something up.

I know one thing for sure. I will not settle for POTS taking over my life. I will continue to look for the cause and possible treatment for as long as I am able to. This came on suddenly, and something caused it.

I've always wondered if the stress just caused a bigtime weakening of the adrenal glands. I know this is not Addison's, but maybe on the way to it. I have polled a few Addison's patients about how they felt a year or two before they were diagnosed. MOST said they had been having odd symptoms that slowly led up to their full-blown Addison's(adrenal failure). What if our adrenals are just weakened, able to keep us going, but not with the normal daily stressors of everyday living? I get worse when I am stressed, good or bad. So far doctors don't really look at the adrenals as being weakened, just if they are working, overworking, or not working. They don't address the weakened department. Any thoughts?

GaryRN-hey, I WAS an RN until my problems left me unable to work. Anyway, you said the thing that a virus and stress have in common is immunosupression. They also both cause a stress on the adrenal glands. If an Addisonian gets a cold or has a huge mental stress put on them, they are supposed to "stress-dose" with cortisol so they don't go into a crisis. That could also be the common thread.

[Lizzegrl]

Mine is genetic too. Born with it. The ups and downs can be influences by things like viruses, but overall, mine was caused by simple genetic miscode.

See below a quote from the Vanderbuilt U. Dysautonomia web site:

http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4788

"Our understanding of orthostatic intolerance was greatly expanded in 2000 when norepinephrine transporter (NET) deficiency was reported. In a proband with significant orthostatic symptoms and tachycardia, we found disproportionately elevated plasma norepinephrine with standing, impaired systemic and local clearance of infused tritiated norepinephrine, impaired tyramine responsiveness, and a dissociation between stimulated plasma NE and DHPG (an intraneuronal metabolite of NE) elevation. Studies of NET gene structure in the proband revealed a coding mutation which converts a highly conserved transmembrane domain Ala residue to Pro. Analysis of the protein produced by the mutant cDNA in transfected cells demonstrated greater than 98% reduction in activity relative to normal. Studies of the proband and her family revealed correlations of plasma NE, DHPG/NE, and heart rate with the mutant allele. These results represent the first identification of a specific genetic defect in OI and the first disease linked to a coding alteration in a Na+/Cl- dependent neurotransmitter transporter. Identification of this mechanism may facilitate our understanding of genetic causes of OI and lead to the development of more effective therapeutic modalities."

This might give you a good idea what the NET variant of POTS is all about:

http://content.nejm.org/cgi/content/abstra...ournalcode=nejm

[bkweavers]

I know the majority of people on here are adults but you're forgetting about the population of adolescents with autonomic disorders. My 12 yr. old daughter became sick on March 13th of 2007. She did have a fever and body aches along with her dizziness and headache. The fever and aches went away and the rest has stayed to this day. I know people would say that her POTS came on soley because of the virus but my husband and I strongly believe hers came on because of puberty. Looking back 2 years prior to 2007,she would always get dizzy and have a headache each time she was sick and this was the same time her body began to change.

Another interesting thing about her is she was born with congenital hypothyroidism which means she doesn't have a working thyroid gland. She was also born prematurely at 26 weeks. No doctor has thought the prematurity was significant but we have been told by Dr. Grubb's office that a lot of their patients with POTS also have thyroid issues. I've asked my daughter's endocrinologist if he knows of any connection between the two and he had no answers for me.

There are genetic factors also. My husband's family are big on fainting and migraines. My side of the family has terrible migraines and other neurological diseases. I have an aunt who I swear has POTS but doesn't want to bother with the testing because she says her medications help her dizziness.

It's just so interesting and I wish their would be more research out there on adolescents. I wish I could get more answers concerning my daughter but for now, we're just trying our best to keep her as normal as possible and hopefully, she'll grow out of her POTS.

Brenda

[juliegee]

I know the majority of people on here are adults but you're forgetting about the population of adolescents with autonomic disorders...

Brenda

Hi Brenda,

Many are here on behalf of their kids/teens and many of us also have POTS- familial connection My son became ill on July 3, 2004 at age 12 when he became stricken with a GI virus. His acute symptoms are managed today with meds/lifestyle. But he had to miss almost a full year of school. Like your daughter, his symptoms persist to this day. Adolesence and a huge growth spurt (5-6" the year he was most sick) most definately contributed to everything. Unfortunately, there are many, many youngsters represented here.

Hugs-

Julie

[iheartcats]

My sister is showing signs of POTS (she's three years younger than myself). I threw a HR monitor on her at the holidays and had her sit down (80s) and stand up for a minute (115-120). She takes her rate randomly now and it's high standing. Plus fatigue. She has had a lot of stress in the last couple of years.

My mother has had symptoms on and off for many, many years but won't go to the doctor. I know she's had stressful life events, too.

I guess we're all 'functioning'...I have to take a crapload of meds to function though, but we're functioning.

So I just have a feeling there is some genetic trigger they haven't found. I hope they do!

[morgan617]

I can't ever remember not having it, but stessors and things do seem to exacerbate. The only thing it could be, if not genetic and we are looking for some kind of trigger, was at age 2, I got into 2 bottles of baby aspirin and ate them all. I was in intensive care for 3 days. I've hated the taste of them ever since.

But I have been sick as far back as I can remember. I really don't think I care what the literature says, there's too much about it we don't know, we don't know far more than we do, so I don't care how I got it, only about how to treat it, which is symptomatically at this point.

My guess is the longer you have it (although I hope you get over it as fast as you got it) the less you will be plagued by the why's and how's, like many of us who've had it forever. It just becomes more important to address how to feel better, than what caused it in the first place. I believe I have read where it could be genetic, but it was long ago and far away in some other galaxy....morgan

[ramakentesh]

gary, the whole premise of this thread is flawed. You state that 'stressors' as if there is a large body of evidence that demonstrates that these alone trigger this illness.

Then you state:

I'm still plagued to try and figure this out. When you look at what causes POTS, they think it is due to an unknown Viral or Bacterial illness, or occurs after a Trauma.

Who is they? ive never read ANYWHERE that researchers currently think that POTS is caused by unknown viral or bacterial illness. What I presume is that YOU think that is the cause.

In my last reply to another of your posts I explained what the current research suggests so I wont bother to reiterate it here. If your trying to work it out, Id base my understanding of the condition on information from the experts:

Dr Grubb:http://knol.google.com/k/blair-grubb/postural-tachycardia-syndrome/z0Lsji-N/oPFBfQ

Dr Julian Stewart:http://www.nymc.edu/fhp/centers/syncope/circulatory_findings_in_pots_and_CFS.htm

And for quick understanding:

Dr Grubb:

Peripheral Dysautonomia - autoimmune attack on peripheral nerves accounts for 90% primary POTS

NE Transporter deficiency - accounts for 10% POTS

Dr Julian Stewart:

High Flow POTS - Periperhal Dysautonomia as above

Normal Flow - Inflammatory response in the stomach mediating excessive nitric oxide levels causing POTS

Low Flow - decreased bioavailability of Nitric oxide due to elevated angiotensin II = POTS

And the point is that there is agreement to some degree that these are the likely culprits of POTS - as in one of these four models. There is a body of evidence to demonstrate this. There isnt a body of evidence to suggest that POTS is the result of an ongoing viral or bacterial infection.

Sure trauma could preciptate a autoimmune illness - this is proven in all sorts of other autoimmune illnesses.

Stress will excacerbate any illness in which the autonomic nervous system is overly active - such as POTS

[ramakentesh]

Mine is genetic too. Born with it. The ups and downs can be influences by things like viruses, but overall, mine was caused by simple genetic miscode.

Wow, I am quite interested in your response. My understanding was that the genetic miscode for the NET gene occured in only two POTS patients and has never been found in any POTS/OI sufferers.

In a test of my and another six POTS patients, five of us were found to have reduced level of the Norepinephrine Transporter Protein in our vein biospy despite the gene itself being normal.

They think that this may have been caused by hypermethylation of the gene promoter, switching it off and resulting in the same circumstances as yourself.

What are your specific symptoms if you dont mind me asking? classic POTS symptoms or something different? Do you get lightheaded, dizzy, syncope? Do you think that you suffer blood pooling?

Something you may find interesting, there is some evidence that the NET itself may not play a causal role in POTS. A recent study inhibition of the transporter was found to IMPROVE presyncope:

http://content.onlinejacc.org/cgi/content/abstract/48/3/516

Also excessive norepinephrine action does increase the sympathetic reaction to orthostatic stress but it is unclear how this could account for the blood pooling found in ALL patients with POTS/OI.

In a study of POTS patients with reduced NET expression it was found that their norepinephrine wholebody spillover was significantly increased despite an excess in nerve firing rates to orthostatic stress.

What this means is that there appeared to be an abnormality in nerve traffic and baroreflex that went beyond NET dysfunction:

http://circep.ahajournals.org/cgi/content/abstract/1/2/103

And finally, maybe some good news...

This study found that an antioxidant found in olive leaves potently improved NET function and NE reuptake:

http://www.biomedexperts.com/Abstract.bme/...omocytoma_cells

This substance is quite bioactive when swallowed to.

[ana_22]

^ is thatlike olive leaf extract that you can get from pharmacies?

[Dizzy Dame]

Symptoms started as free floating anxiety, no drug could get it under control, then came shortness of breath sometime with and without anxiety, the attacks would last anywhere from 1-3 hours and sometimes occurred while just sitting in a chair. Next came the tachycardia, and then all 3 together. Thats how I got my POTS.

Mine started the exact same way. I'm convinced I developed POTS because of a very abusive/neglectful childhood. I see a therapist who I believe has helped me get physically better just by processing my trauma. While I don't beleive trauma makes people sick, I believe it lower our bodies defenses and makes us more prone to illness. I feel like some people process their emotions physically, and illness can be more common in them, but that's just my 2 cents.

[MightyMouse]

None. I was conceived. There you have it.

Nina

[morgan617]

I'm with Nina on this one. Some of us are just born with crap. Some day they will know, just not today. morgan

[MomtoGiuliana]

Pregnancy was my stressor. Although probably already had autonomic dysfunction--just the symptoms were generally tolerable until then. Never quite the same since--although generally good health now.

One of my sisters also has POTS. In her case, no clear stressor to the onset of intolerable symptoms.

Think there's a lot we don't know.

[Tammy]

I never had much energy and always needed nap to function. All my friends could go from morning to night and I always had to sleep for an hour or two before I could go out or go to work after school when i was younger. Basically, when my daughter was born, i could no longer take naps, and sleeping through the night did not happen as she ate every 3 hours for the first few months of her life. My body go totally screwed up and even though I was so exhausted I thought I had to try and hold a job too, so I went back to work and CRASHED big time. Still haven't recovered. Strangly enough, I had a virus at the same time that I started back at work and wonder what was the straw that broke the camels back.