sue1234 Posted June 28, 2011 Report Share Posted June 28, 2011 I know quite a few of you said you began your POTS/dysautonomia journey with a virus. I have always wondered what kind of virus you had. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 28, 2011 Report Share Posted June 28, 2011 West Nile Virus July '07Chicken Pox Dec '08Everything started getting weird at the end of December '08. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 28, 2011 Report Share Posted June 28, 2011 I had mono in 5/06, then I was in a car accident in 9/06. I didn't get sick with POTS til 10/06. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted June 28, 2011 Report Share Posted June 28, 2011 I had signs of MCAS even as a child - flushing, salt cravings, itching, collapsing in extreme heat. But in 1987 I was in a car accident, then a few months later got a mono-like? infection (that's what I was told at the time - I test positive for EBV antibodies, but so do most people by my age apparently). The POTS hit at the time of the virus and I missed much of my last year of high school, and have never really recovered since then. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 28, 2011 Report Share Posted June 28, 2011 I can look back now and see I had symptoms when I was a teenager, but it was in 1987 that i got mono and it hit me like a ton of bricks. My life has never been the same since. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 28, 2011 Author Report Share Posted June 28, 2011 I changed the subtypes in #3 and #4, as I now see that mono was tagged as "other". So, I put mono. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted June 28, 2011 Report Share Posted June 28, 2011 They think that the illness that started my dysautonomia was valley fever, which is a fungus that lives in the soil in parts of Arizona. I got sick about 4 months after moving to Tucson. And I'm still here 7 years later because....hmm, why am I still here? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 28, 2011 Report Share Posted June 28, 2011 I was dx with EBV in fall of 2000, but I was definitely sick during the Summer of 2000... I still consider a gradual onset for my POTS rather than immediately after being sick. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 28, 2011 Report Share Posted June 28, 2011 My son had no illness first. It was a very gradual increase in symptoms. Starting in the 5th grade, by the 8th grade it was a daily problem. (My daughter has symptoms as well, as did I as a teenager but neither of us were debilitated.) Ours is some hereditary issue. We participated in a study in Cleveland where everyone in the family answered questions on a long questionaire.My sons became it's worse after a very fast growth spurt.Christy Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted June 28, 2011 Report Share Posted June 28, 2011 Can't really answer, but I had a fever 99.4 to 101.8, 8 months (consistantly) before I had a hysterectomy for cervical cancer. The fever never went away and I developed an abcess 6 weeks after the surgery which I was hospitalized for 7-8 days. The docs couldn't figures out the reason for the fever. But symptoms have gotten progressively worse ever since then. Quote Link to comment Share on other sites More sharing options...
Lindsay Mold Posted June 29, 2011 Report Share Posted June 29, 2011 This is really interesting. I didn't realise that pots often starts with some kind of virus. I have only just been diagnosed with pots but i know that ive had the symptoms for at least 18 months. ive had ME/CFS for 13 years though and it is hard to tell which is the ME and which is pots. My illness didnt start with a virus, which is unusual for ME. The symptoms came on gradually but i had been through several big emptional traumas for the 2 years before. Im sure now that i had post traumatic stress as we were burgaled whilst i was in the house and i was never the same after that.Pots and ME have alot of symptoms in common and it seems a similar onset. I wonder how much they catually cross over? many people with ME probably have pots and some people with pots probably ahve ME and dont know it? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 29, 2011 Report Share Posted June 29, 2011 I had some blood tests after this started and found I had Hepatitis A!!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 29, 2011 Author Report Share Posted June 29, 2011 I just want to say that I was not one that had a virus prior to my POTS, but for years have always wondered WHAT type of virus you guys had when you came down with POTS. To be honest, I assumed that you all were talking about a gastointestinal virus, so it's interesting to see that most had mono, chicken pox, west nile, and now a hepatitis. I had mono way back as a teen(51 now), but I had a really normal adulthood, so don't think it contributed. Makes you wonder, though, why these viruses trigger this in you all, and doesn't trigger this in 99.9% of the people. Quote Link to comment Share on other sites More sharing options...
giftcreations123 Posted June 29, 2011 Report Share Posted June 29, 2011 Mine started with mono when I was 21. I was never the same since. I then was sick again a few months later and diagnosed by a cardiologist because of tachycardia with epstein barr virus.Remember going to so many doctors but no one diagnosed me.I was functional though all those years , always hoping I would never pass out.It was over the last 3 years, that my symptoms really flared up from a flu and a ton of stress.At least I finally got diagnosed but unfortunately, I am not so functional anymore. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 29, 2011 Report Share Posted June 29, 2011 Right before this started there was a "perfect storm" of bad thing: Ear infection, japanese hair straightening, levaquin, I had a tetanus shot, Hep. A positive, quit my job, this all happened in the four weeks leading up to that day at work when I got so lightheaded. I did have mono when I was 19, it hit me hard but I did get better and never worried that I had effects from it. I tested neg. for Lymes recently but sometimes I wonder..... I also tested positive for gluten intolerance recently. 45 on the IGA. Not sure how it all adds up, if it does at all Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 29, 2011 Author Report Share Posted June 29, 2011 About 6 weeks before my POTS started out of the blue, we had our house treated for termites. I don't really think it contributed, as the rest of my family was fine. And, I had a few months before my POTS hit where I could be upright all day long, BUT looking back, see where I would fidget while standing in line. At the time, I don't think I knew why I was fidgeting, but later realized my body must have sensed something was "off". The day POTS hit, I have never been able to stand, even moving, for more than 10 minutes.I took Levaquin about 10 years ago for my first bladder infection, and I think all my stomach issues started at that time. The bloating began, and is still with me 10 years later. Of course, I realize it is probably an imbalance of bacteria, but have never had a doctor help me get through converting the bad to the good.I just listed all this, as it seems like others are listing all the health issues that were going on in the time frame of POTS hitting them. Quote Link to comment Share on other sites More sharing options...
abnel Posted June 30, 2011 Report Share Posted June 30, 2011 I wish I knew the answer to this question. The virus that hit me was one I have never experienced before in my life. I never used to get headaches, but I had severe pain in the back of my head that spread all the way down my spinal column. I was in pain for 3 days and nauseated, running a fever - going from freezing cold to boiling hot in seconds. None of my doctors think it was CMV or Epstein Barr virus. Although my blood tests show I have had both of these at some point in my life. Two weeks before getting the virus I had just flown back from a vacation in the tropics. They tested me for Dengue fever and Ross River virus but I was negative to both. My POTS developed slowly and insidiously after I recovered completly from this virus. I have not had these viral symptoms since. My POTS symptoms are nothing like the viral symptoms. It feels to me like this virus, if that's what it was, damaged the nerves in my nervous system in my spine. I have never had any POTS symptoms in my entire life until this 'virus' hit me. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 30, 2011 Report Share Posted June 30, 2011 So interesting Lotus Flower - and weird. Wow, I am amazed at how many people can directly link the beginning of their POTS to a virus. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 30, 2011 Report Share Posted June 30, 2011 I wonder if you had a type of meningitis?I experienced something a little similar right after chicken pox. I got a stiff neck and fever and it scared me to death.I did not go to ER because I was afraid to have a spinal tap. Also west Nile felt like fire running up and down my arms and legs with a heaviness associated.I would almost get a strange buzzing sound in my ears that made me feel like I was in a tropical jungle-I thought this feels like jungle fever then west Nile popped into my head I looked it up and had all the symptoms.I went and tested positive and just about dropped my jaw.We had just been on vacation the week prior in Michigan and I had gotten bitten up the one night with mosquitos. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 30, 2011 Report Share Posted June 30, 2011 I believe we came down with these viruses in the first place because our immune systems were already compromised/suppressed. The virus wasn't the first thing that happened, it's just what finally knocked us down a few notches and we never fully recovered. I know I was already feeling off months before I got EBV.I think in most cases where physical issues aren't present(like EDS or neck problems), that toxins of all types could be the cause or source of POTS. Each person has to investigate on their own though and figure it out. It won't be the same for each. Quote Link to comment Share on other sites More sharing options...
abnel Posted June 30, 2011 Report Share Posted June 30, 2011 Lieze, I've always suspected that I had some kind of meningitis. Is there any way to test for it now? It's been about 2 years since I had the virus, and I've always wondered what it was. I never went to see a doctor. At the time my husband told me I was being silly worrying that it could be meningitis so I never bothered to see a doctor. Silly me for believing him when I should have trusted my own instincts! Quote Link to comment Share on other sites More sharing options...
lieze Posted June 30, 2011 Report Share Posted June 30, 2011 Lotusflower I really don't know if they can test for it now-maybe someone else can answer that.I am a nurse so as soon as I got the stiff painful neck and fever it was Uh oh but I was too chicken to go to the hospital. My husband looked it up on the Internet and said something like 75% of the time people have menangitist and don't even know it and it resolves without an issue.At least that is what he told me at the time.I will tell you that I was shocked to diagnose myself with west Nile virus.. I thought that was pretty out there that I just knew. The infectious disease specialist I went to didn't think it could be because we had no reported cases in our area back in 07. But the fact that I'd been on vacation he went ahead and ordered the test. After I had it though I was also shocked by his response he said there is no treatment just fluids and rest.I double checked with my kids doctor at the time because I did not have one and he said that's right there is no treatment-you either live or you die-ugh!As far as the meningitis I don't know how they would have treated that especially if it was viral?It's very suspicious that you were in a foreign country right before the symptoms started. I agree with you that you picked up something it's just hard to know what. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 2, 2011 Report Share Posted July 2, 2011 I've felt I had symptoms since teen-age years. But in feb 2002 or 2003 I came down with mono very bad plus at the same time some carbon monoxide poisoning.... woke up one morning feeling like the flu, stood up from bed and hit the ground like a ton of bricks. I was so so sick and paralyzed from head to toe, yet could feel such intense sickness and death like suffering that I just could never explain, and the weakness and exhaustion and so many symptoms. Never was the same after that........tennille Quote Link to comment Share on other sites More sharing options...
Troy Posted July 3, 2011 Report Share Posted July 3, 2011 The virus that started my POTS was known as the "recreational drug overdose" On a serious note though...so what happens when someone who developed POTS due to a virus catches the same virus again? Do they just redevelop a worser version of the POTS or will they not be phased by it as they already have POTS ? Quote Link to comment Share on other sites More sharing options...
lieze Posted July 3, 2011 Report Share Posted July 3, 2011 We are supposed to develop immunity to these things and not catch them again...I know it doesn't always work that way but it's supposed to be a one time deal. Quote Link to comment Share on other sites More sharing options...
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