I had a vaccine and a week or so later my symptoms started, I do believe that this vaccine, although mine was a hep b, triggered what was already there to some extent.
With POTS, even catching a virus can trigger symptoms or increase there severity, some people have the condition brought on by illness, so it makes sense to me that introducing a virus into our systems will trigger what may be there already.
There are people on this board who will be able to give you more detailed information on the subject.
It has taken me 6 months for my symptoms to become less severe and I will never chance having any type of vaccine again, it's just not worth it.
I hope you get some answers soon x
There is no evidence that the seasonal flu vaccine has any effect on a healthy nervous system. Vaccines such as the seasonal flu vaccine work by causing your immune system to produce antibodies to the strains of (deactivated, or dead) flu virus that are contained in the vaccine so that if you are exposed to live virus of those strains later, you will already be immune to them and won't get sick. This is no different than if you were to actually catch a certain strain of the flu and recover from it naturally, whereby your body would produce antibodies to that strain of the flu in the process and any subsequent time you were exposed to the same strain of the flu you would not catch it because you would then have immunity to it. However, the advantage of the vaccine is that you circumvent the risk and inconvenience of actually having to catch and recover from all these strains of the flu to develop immunity to them because the flu in the virus isn't alive. Sickness that a healthy person feels after getting a flu vaccine isn't actually having the flu, it's just the symptoms of their immune system hopping into action producing the antibodies. (This is not to say that no one ever has reactions to vaccines such as allergies, just what happens normally.)
However, dysautonomia such as POTS can be "triggered" by a large number of things, and I certainly wouldn't rule out vaccines as a possible trigger. The reason for this is that it is known that some forms of dysautonomia can have an onset after a viral infection or after a major stressor on the body (such as pregnancy, surgery, or a motor vehicle accident), and one might surmise that a strong immune system response to a vaccine might be enough to be a trigger for some people.
I just want to be careful not to demonize vaccines because vaccines save so many more lives than they ruin. Looked at differently, pregnancy also can trigger the onset of dysautonomia but I doubt many would have a harsh view of pregnancy as something inherently dangerous just because it can have ill effects in the lives of a few. I'm not saying anyone here is on the "vaccines are evil" bandwagon ... I guess I'm just touchy about the subject because there are so many misconceptions and myths about vaccines which are surfacing anew in light of the H1N1 vaccine. (I studied history of medicine at Johns Hopkins so I have a strong interest in epidemics, pandemics, immunology, public health, etc.)
My family members have trouble with major reactions to vaccines. I was recently diagnosed with an autoimmune disease, now my mom has been, and most of the rest of the family has the same symptoms of the autoimmune disease. I'm very suspicious that those who react wildly to vaccines already have overactive immune systems that have not been diagnosed. However, I have not read any good studies to back that up. It's just based on observation in my family, and it seems like a reasonable explanation.
If your immune system gets out of hand, then yes, it can cause neuropathy, usually peripheral.
Thank you for your input, much appreciated...
Same like you not wanting to say vaccines are bad ... but you say "there are so many misconceptions and myths about vaccines which are surfacing anew in light of the H1N1 vaccine" as I posted on another thread, we are not getting the flu vaccine nor the H1N1 vaccine, I have had my kids vaccinated for all the other vaccines that kids get since they are babies as I do believe that those work.
As far as this H1N1 vaccine goes though, there is not enough clinical trials to give me enough confidence that I or my family should be vaccinated even if I was not already dealing with POTS.
I'm sending you this link from Glaxal itself http://www.gsk.ca/english/docs-pdf/Arepanrix_PIL_CAPA01v01.pdf (24 pages) about the H1N1 vaccine.
What concerns me in this document amongst other things, Glaxal states "There is currently limited clinical experience with Arepanrix™ H1N1, and limited clinical experience with an investigational formulation of another AS03-adjuvanted vaccine containing the same or a slightly higher amount of antigen derived from A/California/7/2009 (H1N1) (see section Pharmacodynamics) in healthy adults aged 18-60 years and no clinical experience yet in the elderly, in children or in adolescents" so if they have no data for the elderly, children or adolescents, how sure can I be that it is safe for my kids?
Also for our age bracket "Adults aged 18-60 years: One dose of 0.5mL at an elected date. The need for a second dose is currently unknown. However, preliminary immunogenicity data obtained at three weeks after administration of an investigational formulation of another AS03-adjuvanted H1N1 vaccine containing either 5.25 μg or 3.75 μg HA derived from A/California/7/2009 (H1N1) (Pandemrix™) to a limited number of healthy adults aged 18-60 years suggest that a single dose may be sufficient in this age group" The need for a second dose is unknown, so one dose may or may not work, they did this trial on a limited nubmer of healthy adults, those already with an illness they don't talk about nor do they say if it would compromise their health even more.
We are still not vaccinating, I think this vaccine was rushed, we do not know fully what the impact will be years down the road but I'm keeping my options open, although here in Canada there is already a shortage of vaccines so even if I wanted it we can't get it now, and I'll continue reading lots about it.
Now to Frosty1227, my POTS started after a viral infection and I'm sorry to hear you are now going thru this, remain positive (as much as you can) my symptoms decrease by increasing vitamin intake as suggested by a Naturopath, a year later I feel much better than when I started but I'm not a 100% but can manage most days. Good luck and let us know how you do.
I feel that I could have written your question. I have gone through all of this since having the swine flu vaccine on October 23rd. I have been in the hospital for several weeks- with deep burning sensations, shortness of breath, elevated blood pressures, orthostatic hypotension, semi passing out after eating or talking long periods of time, extreme weakness but strength (according to all doctors) is normal....learning how to walk again...
severe panic attacks and hypersensitivity to smells, light , touch ,heat.....(never had this before).. only diagnosis- need to see psychiatrist...Doctors refusing to believe it came from a vaccine......I also had the flu vaccine regular on October 7th- had some mild numbness then but I do have herniated discs in my neck so thought it might come from that. Who do I see next, I am now trying to get on disability leave. Any suggestions of who I should see next. ( I have seen 3 neurologists already). After reading I think I may have this dysautonomia syndrome .........Help
I am sorry to hear you are suffering so much.
I was in hospital for nearly 2 months and mentioned the vaccine to my doctors, but they dismissed it. But I haven't felt well for quite a while so I believe this may have just triggered what was lurking beneath. I work for the NHS and recieved my hep b vaccine through occupational health, then a couple of weeks later recieved an email regarding a 'faulty' batch - but when I rang and asked if this is what I had recieved they said no - I have kept the details anyway just in case.
May I ask you what tests have you had done?
Have you been evaluated by a endocrinologist?
What happens to your heart reate on standing and being upright?
Have you had a tilt table test?
I was/am experiencing most of the symptoms you describe, the weakness I had for the first few months was so severe but I too kept my muscular strength, this has gradually eased and I am just generally tired and have occasional days of weakness. I still have many symptoms but I am trying my best to push through them.
There are many knowledgable and supportive people on this forum so you have come to a good place and we will try our best to help you and point you in the right direction, so maybe you may get some answers.
Sorry about the questions above but the more information we have the better we can try and help you. Please try and stay strong and keep fighting.
Thank you. I have not officially seen an endocrinologist (have friend who is one)- at first they thought I might have pheochromocytoma- because of my high blood pressures but I had the 24 hour urine test several times and was negative (although I was on blood pressure meds both times- beta blocker. I had a tilt table test and again I was on a beta blocker and now an alpha blocker- so my heart feels as if it is coming out of my chest and irregulary but the medication slows down the heart rate . They gave me 1 nitroglycerin tablet during the tilt table and I had orthostatic hypotension severely.. All my symptoms to intensify after the tilt table and I knew they could figure out what was wrong but docs came up with nothing. It is frustrating that they do not feel that there is a link to the vaccines - even though it happened right afterwards... I had spinal tap/ EMGs to check for Guillian Barre-all normal. Also it seems to be worse after eating especially certain types (still not sure what types - heavy food, gassy foods... dont know what foods I should be eating......
I had urine testing for a pheo also because of symptoms and a growth but these came back within normal levels. I am not sure whether the medication you were taking can effect these results. The best test for a pheo is a Plasma Free Metanephrines blood test, this has a higher accuracy rate than the urine tests, but it may be hard to get. My doctors would not give me this.
I believe you are meant to be medication free for the tilt table test, where you taking beta blockers on the day?
There is a type of hypotension that occurs after eating, this may be what you are experiencing, I don't know much about this but other forum members may give you more insight on this.
There are several other conditions that cause POTS symptoms, including addisons disease and mast cell activation disorder.
Below is a link to an index of community health pages with information on dysautonomia and much more:
Sorry, regarding foods you should be eating, if you do have POTS a diet high in salt is recommended, and fluid - lots of it. Rehydration drinks such as gatorade are also highly recommended. These are easily available in the US but harder to find in the UK.
Try keeping a diary of your symptoms and daily intake - see if their is a pattern or reaction occuring. There are some good trackers within this forum see if they could help you keep note of what is happening to you.
Some pheochromocytomas can have silent periods, so you would need to be sure you were/to get tested in the midst of having an episode of the tachy and elevated blood pressures- plasma free metanephrines is the most sensitive- a fasting test and certain things you should avoid prior to having it done. 24 hour Urine metanephrines is a little less accurate. Was there any abnormality at all on your 24 hour tests (not enough to diagnose with pheo, but any elevated number?)
I was given labetalol when a doctor wondered if I had this kind of tumor, as it addresses the BP I think he said from two directions. I've had a number of higher than normal numbers happen with testings, but not high enough for any doctor to think I have that kind of tumor. Some patients with POTS have high standing norepinephrine levels. This is why I think my numbers related to that are likely POTS related.
I would think you would not want to be on the BP medication for a metanephrine test or on the day of a tilt table.
Did you not have orthostatic hypotension prior to the nitroglycerine? Because in POTS, BP typically maintains or goes up with standing with an increase in pulse of more than 30 beats per minute.
Which discs herniated in the neck? The top two is where your spinal cord is responsible for an awful lot and might explain at least part of your symptoms if that is being affected in any way. Have they done a brain scan to check for tumors?
It has almost been a year since the swine flu vaccine nightmare- still with symptoms but much better. Tired all the time, short of breath, problems with temperature regulation - with chills and shortness of breath and still with blood pressure issues but at least the horrible burning sensations and excessive muscle weakness is gone....did know several people in my area with same reaction to vaccine so be careful with this year flu vaccine...
I received the H1N1 vaccine in January 2009 and less than 48 hours later I passed out. I have been having crazy symptoms ever since that effect me daily and I don't think it is getting any better. In fact, I'm pretty sure I am getting worse. I have seen 3 cardiologists (diagnosed with POTS... with sinus tachycardia during symptoms/episodes, recurrent low blood pressure and high heart rate even with medication and compression hose while laying down); a pulmonary doc (diagnosed with reduced diffusion capacity with no known etiology); a cardio-pulmonary sports medicine doc (who, based on my low VO2, thinks my reduced diffusion capacity is actually my body not extracting the oxygen from my blood and is requesting a referral for a muscle biopsy to see if I have mitochondrial myopathy); and I'm headed to my 4th neurologist to rule out seizures. My pulmonary doctor is trying to get a referral to the Mayo Clinic for autonomic testing. I have multiple symptoms that range multiple systems within the body, which is why they haven't been able to put their finger on it... and account for all the different types of doctors I've seen. In addition to the "diagnoses" above, I have syncope episodes, exercise intolerance, impaired mental functioning, and depending on the day I can be heat intolerant, cold intolerant, light intolerant, and experience visual effects and other muscle sensations from restless "limb" syndrome to very painful involuntary muscle contractions/spasms.
Until a physical therapist (fitting me for my compression hose) recommended it, I didn't even know there was such a thing as autonomic dysfunction testing. One of the cardiologists told me they had to test me for everything they could think of that would account for my symptoms and, ruling out all of those disorders, they would be left with an autonomic dysfunction. For the last two years, I have undergone more tests than I can keep up with; so I was relieved there was an actual test to rule something in.
Anyway, I was interested to talk to others to see how soon after the shot you started to have effects. What was the course of medical diagnosis? Do they consider there is any available cure or treatment? Are you improving over time, with or without treatment options?
Thank you for your time.
Hi and welcome to the dysautonomia forum, Heather!
Since this was an old thread and any people still active with medhelp may have deleted it from their watch list, you may either private message the people you addressed, copying and pasting in your message to each of them a link to this thread or click on post a question and start a new thread, to increase the likelihood of getting someone to respond. I looked on Frosty's page and it looks like she hasn't posted since 2009. :0(
I received the flu shot and the next day developed nervous system damage including POTS. Contrary to what some here have said there have been numerous studies showing ALL vaccines, including influenza, can cause encephalopathy which is brain swelling that leads to damage of the nervous system. I was perfectly healthy, ran, played sports, lifted weights, and now I'm crippled. Please educate yourself before you vaccinate.
Yes, we should all educate ourselves before undertaking any medical prevention or treatment. However, the tone I'm perceiving when you say "please educate yourself before you vaccinate" is that somehow by being armed with the knowledge that a minority of people have (admittedly sometimes quite grave) adverse effects from "ALL vaccines," one might make a different choice about being vaccinated. If, indeed, every person on earth were armed with this knowledge and if, indeed, every person on earth eschewed vaccination programs to avoid the (relatively minute) risks, then humans would be returning to much higher mortality rates from measles, mumps, rubella, influenza, chicken pocks, polio, smallpox, diphtheria, and their ilk. In fact, it only takes a fraction of the populace to refuse vaccination to undermine the "herd immunity" upon which vaccines rely and allow a resurgence of a disease like polio.
So please educate yourself before you attempt to use sweeping generalizations and statistical overstatements to scare people into undermining one of the most successful tools modern medicine has against infectious disease epidemics.
If you have a question for our forum, please start a new thread by clicking "post a question." You are currently responding to an old, "dead" thread. Moreover, the purpose of this forum is twofold:
(1) for patients to ask and answer each other's questions about autonomic dysfunction
(2) for patients to discuss the course of their own illness and offer each other personal support
From what I can see, you are making multiple posts here where you are not responding to someone's question nor engaging in discussion with anyone but yourself; as I pointed out, you are posting in response to a question that was asked in 2009—four years ago. You are not asking a question (though as above, I invite you to do so). You are not seeking personal support from what I can see either. It appears to me that you are, rather, posting a series of personal rhetoric/politic items. MedHelp suggests that these type of posts be restricted to your personal journal. Please contact me by personal message if you need help finding where your journal is on the site. Thanks, and welcome to the Dysautonomia community.