sideofsalt Posted October 5, 2014 Report Share Posted October 5, 2014 I am due for my annual flu shot. I was dx'd with POTS 2.5 years ago and always went with the mercury-free injectable form. Since I moved, the only mercury-free I can find in my area is the Flumist which contains a partially live or live virus. I'm not sure I want to gamble with the live virus. Have any of us on the board had experiences with Flumist? Was your dysautonomia affected in any way afterwards? Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 5, 2014 Report Share Posted October 5, 2014 My son just saw his cardiologist yesterday. He told him to get the shot since his POTS has been connected to his immune system. No live virus needed. My son took the shot last year and did not catch the flu. He took the shot in January of 2013 and 10 days later he caught flu A . Four weeks later, he caught flu B. My only advice is to get the shot and not wait until full blown flu season. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 5, 2014 Report Share Posted October 5, 2014 My dysautonomia is autoimmune in origin - if you have autoimmune issues, do not take any form of a live virus vaccine - attenuated or otherwise. Unfortunately, I learned the hard way by taking the shingles vaccine. That was the first vaccine I did not look up and study before taking and I became violently ill from the virus. After a week in the hospital, I realized I would survive and was horrified to learn I had let myself be injected with a form of live virus. Even without autoimmune issues, you never know what type of reaction you will have to a live virus - be very very careful and have a discussion with your physician about whether or not it is right for you. Quote Link to comment Share on other sites More sharing options...
blueskies Posted October 5, 2014 Report Share Posted October 5, 2014 I haven't had the flu vaccine in years. A couple of years ago -- just prior to the birth of my granddaughter I had to have the whooping cough vaccine -- doctors were ( they could still be, I don't know) recommending that anyone that was going to be in close contact with a new born should have the vaccine. I saw my allergist and she told me that because it was not a 'live' type I would probably be okay. So I had it, and I was. I didn't even feel a little sick afterwards. Or at least, not any sicker than I usually do. I was so fearful I thought I might dream up a reaction but I didn't. My elderly mother had an allergic reaction to a flu vaccine a few years ago. So now they give her the child's dosage each and she does alright on that. I don't understand how this is so. Perhaps they also give her another type? It has put me off getting the flu shot. I really need to try and find out what was in the flu shot she had the allergic reaction to. But she has so far been very vague about it - most unhelpful. She makes a big deal of not making a big deal about her health. It drives me wild. She spends an inordinate amount of time telling me how well she is, how well she eats, how much exercise she does, and says that her heart problems are not 'her fault.' Like pots and erythromelalgia and mast cell problems are my fault. As I said, it drives me wild. Whoops! A vent. blue Quote Link to comment Share on other sites More sharing options...
Becia Posted October 5, 2014 Report Share Posted October 5, 2014 All I know about the vaccines like the flu vaccine, is it never fails, I get sicker than a dog. And given how sensitive my system is, I don't think I could chance it. Haven't taken one in about 10 years. Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted October 13, 2014 Author Report Share Posted October 13, 2014 Thanks for the input. I finally found a pharmacy that offers a preservative free flu shot. I don't yet know if my POTS is 100% immune-related or 100% pregnancy-related or if it's a mix between the two, since I experienced a chest cold and had a baby before my big crash, but I figured I won't take the chance with the flumist. Hopefully I will get the preservative free shot this week! Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 13, 2014 Report Share Posted October 13, 2014 Whatever form of flu shot or mist anyone can take - please take it! the flu has hit hard in my area (North Florida) and we are seeing patients every day with flu and flu symptoms. Three of our nurses were out last week with the flu - and it's not even cold here yet! Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted October 20, 2014 Author Report Share Posted October 20, 2014 Finally got the preservative free flu shot. One thing to check off the list! Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted October 21, 2014 Report Share Posted October 21, 2014 My two cents... Never ever get these vaccines!!! They are commonly linked to the development of autoimmunes, lupus like reactions, and big time... Guillian-Barres syndrome. I have a chronic form of a GBS variant. Trust me you do not want this.... It is life changing. Not to mention it only lowers your risk of getting flu. Does not eliminate it. Another reason it is not worth the risk. This Artilce came out today. You may find it interesting... http://healthimpactnews.com/2013/flu-shot-causes-polio-like-guillain-barre-syndrome-are-rates-higher-than-the-government-admits/ Quote Link to comment Share on other sites More sharing options...
Krissy21 Posted October 21, 2014 Report Share Posted October 21, 2014 I'm with E Soskis, please get the flu vaccine unless you are unable to for medical/religious reasons! We are also already seeing kiddos with influenza at the hospital where I work. Yes the flu shot is linked to Guillian-barre syndrome but it is a very very rare side effect. Less than 4000 people in the US get this every year from all causes (most vaccines, respiratory and GI infections, etc). You are also very unlikely to die from Guillian-Barre. I'm not trying to downplay it, GBS is a terrible and scary disease, but the flu can be too. Especially in people like us with chronic health problems. The flu kills an average of over 23,000 people in the US every year and many more people get it and are hospitalized with complications. Sorry my nurse rant is over, I just want people to be educated about the flu shot and not be afraid to get it if they are able. http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted October 21, 2014 Author Report Share Posted October 21, 2014 Fortunately, ever since I got the flu shot regularly (about 10 years now), I have not contracted the flu. It's not 100% protection, but it has worked for me. After I got a throat infection post-POTS dx, my POTS and migraines got a LOT worse. That is why I make sure I don't miss the flu shot - if I can avoid further complicating my POTS this way, I get it done. Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted October 21, 2014 Report Share Posted October 21, 2014 Truthfully id rather get the flu than Guiallan Barres. Also I would not expect medical professionals to properly diagnose you once you do have GBS either, especially if you don't have the most severe of cases. There are many variants of GBS and it is not always an easy diagnoses. Many times ER's will send patients home that are partially paralyzed and ask them to call a neurologist and deal with it as an outpatient. If you vitals are okay you are not going to receive help or treatment. You can easily be sent home even if that means not being able to walk out of their. And once you do not treat GBS immediately you can end up with chronic cases, CIDP, chronic motor neuropathy and very disabling and crippling neuropathy that is difficult to treat. And it is very difficult to get IVIG and those treatments. You will get much better medical support if you have the flu than you would if you got GBS. The cases of GBS and syndromes like this from vaccines are much more common than you think and I do not think the numbers being reported are not even close to accurate. Again, this is just my perspective and at the end of the day you must decide what is best for yourself, but Id like to reiterate the point that you will not easily get supportive care for a GBS variant unless your vitals and respiratory system is compromised and this is not always the case. It's just the way the system works. I've been there myslef and ended up with chronic form of GBS for many years that has left me pretty disabled and continuing to deteriorate. I would have rather had the flu 3 times over as long as it didn't kill me.http://healthimpactnews.com/2013/flu-shot-causes-polio-like-guillain-barre-syndrome-are-rates-higher-than-the-government-admits/ Quote Link to comment Share on other sites More sharing options...
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