dawn Posted September 22, 2006 Report Share Posted September 22, 2006 Just curious on who is getting the influenza vaccine this year and when you are getting it.. Last year at the last minute my doctor wouldn't give me one (though I had no problem the year before). He said "with your luck you will get Guillian Barre' Syndrome."I am really feeling paranoid about getting the flu this year. My oldest son has an upper respiratory infection already.Dawn Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted September 22, 2006 Report Share Posted September 22, 2006 Why does your doctor think that you are at risk of Guillain Barre syndrome from the flu shot, but not from a case of the flu?I always get a flu shot, unless there is such a severe vaccine shortage that the vaccine has to be reserved for people who are sicker than I am. Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted September 22, 2006 Report Share Posted September 22, 2006 I got my first flu shot ever last year. I forget when I exactly got it but I'll be getting it again this year...probably in a few months or so. Quote Link to comment Share on other sites More sharing options...
Suzanne Posted September 22, 2006 Report Share Posted September 22, 2006 I got a flu shot 2 years ago and had a major setback. I won't get one again. Maybe my system is just too sensitive. I haven't had the flu properly for a while, all my isolation probably helps keep me away from the germs. There has to be an upside to all of this!!!! Quote Link to comment Share on other sites More sharing options...
persephone Posted September 23, 2006 Report Share Posted September 23, 2006 I agree with Suzanne- the flu jab made me ever so ill this year- I think I couldn't have felt much worse if I'd had the flu itself! Quote Link to comment Share on other sites More sharing options...
Darlene Posted September 23, 2006 Report Share Posted September 23, 2006 I had gotten the flu vaccine in 99, before I was dx w/ dysautonomia. I experienced no side effects. I did get the flu vaccine a few months before I was diagnosed with dysautonomia in 2004. I was severely sick for several weeks after receiving the flu shot. Who knows, maybe it caused my POTS. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 23, 2006 Report Share Posted September 23, 2006 Last year I was scared to take the flu shot because of reading on this site all the different reactions those with POTS have had to it. However, I spent my whole winter terrified to leave my house because of the flu, and every time someone coughed near me I'd have a mini-panic attack. This year I'm going to talk to my doctor about the risks for people with autonomic dysfuction and let her decide if it's worth it or not. I just don't really want another winter where I wall myself up in the house because I'm scared I'll get the flu. ...but I also don't want to have a reaction to it that leaves me in bed all winter...I already had my whole summer eaten up by a major setback. Quote Link to comment Share on other sites More sharing options...
futurehope Posted September 23, 2006 Report Share Posted September 23, 2006 I'm getting one and thanks for reminding me. I'll have to look up where they are being given. The grocery store here gives them before my doctors do. I've gotten a flu shot each year for the last 34 years (I think). Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 23, 2006 Report Share Posted September 23, 2006 My son is treated by Dr. Rowe at Hopkins for his dysautonmia. At Mack's last appt., I asked Dr. Rowe his opinion on flu shots for patients with orthostatic intolerances. He was hesitant to recommend a flu shot. He said to proceed with caution. Flu shots have worsened many of his patients. He seemed to indicate that Mack was safer taking his chances.JulieI'm getting one and thanks for reminding me. I'll have to look up where they are being given. The grocery store here gives them before my doctors do. I've gotten a flu shot each year for the last 34 years (I think). Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 23, 2006 Report Share Posted September 23, 2006 Mack's Mom,I was just curious what in the flu shot Dr. Lowe thought reacts with OI patients...I've done some research and found out that the vaccine basically just contains various strains of the killed virus. Do any of you know why OI patients tend to be more reactive to the shot? Is it just because we're more reactive in general? Or is it something specific? Quote Link to comment Share on other sites More sharing options...
cardiactec Posted September 23, 2006 Report Share Posted September 23, 2006 I am definitely getting the flu shot! i am all set with getting the flu this year! it is horrible even getting a little cold and having to deal with pots symptoms on top of it. my doc told me that it is very important that i get the flu shot because of the POTS considering the "true flu" is the nasty one where you have diarrhea/vomiting/lots of coughing, all things that promote dehydration....and we all know that being dehydrated is a BAD state to be in - for anyone for that matter - but much worse for use dysautonomia people. i have never gotten sick from getting the flu shot, and actually it has most likely prevented me from getting the flu since i work in a hospital and everyone seems to end up with the creeping cruds, especially throughout the winter season. the flu shot is a dead virus, so chances are, if you think you got sick from the flut shot, you probably didnt but instead already had a virus brewing in your system before/during getting the flu shot..... Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 23, 2006 Report Share Posted September 23, 2006 I can't specifically say "what" in the flu shot gave him concern. He did say that if you've had a flu shot, since being DXed w/ an OI (POTS, NMH) and you didn't have a negative reaction- you'd probably be OK. Otherwise, he seemed to advise caution. Julie Mack's Mom,I was just curious what in the flu shot Dr. Lowe thought reacts with OI patients...I've done some research and found out that the vaccine basically just contains various strains of the killed virus. Do any of you know why OI patients tend to be more reactive to the shot? Is it just because we're more reactive in general? Or is it something specific? Quote Link to comment Share on other sites More sharing options...
yogini Posted September 23, 2006 Report Share Posted September 23, 2006 I was very scared at first, but I've had 2 of them since getting POTS, and seemed to do OK. Getting the flu with POTS would be horrible, so I'll be getting one again this year. I've seen an autonomic specialist in NYC in the past, who reccommends it to all of his patients. I think I've also read that Dr. Grubb recommends it. This has come up a few times before, so you may want to do a search. Here is a link to one of the prior posts:http://dinet.ipbhost.com/index.php?showtopic=4004&st=0 Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 23, 2006 Report Share Posted September 23, 2006 i've gotten the flu shots for years without a problem and will continue to do so. and yep, a search should bring up LOTS of previous discussions on the subject...as a quick clarification, dr. rowe "became" dr. low in the conversation. just so no one is confused (or at least not about the small little point...i know i for one am confused about lots of other things )...they're both autonomic specialists. dr. rowe is a pediatrician at johns hopkins; dr. low is a neurologist at mayo clinic. melissa Quote Link to comment Share on other sites More sharing options...
gwen Posted September 24, 2006 Report Share Posted September 24, 2006 I get what the dr calls "half a shot". she may be pulling my leg but I didn't get the flu or sick from the shot. Maybe other dr's do this? She especially wanted me to have some coverage because of what she was afraid the flu would do to me. Quote Link to comment Share on other sites More sharing options...
calypso Posted September 24, 2006 Report Share Posted September 24, 2006 I have had the shot two years with POTS and one without. The year I didn't get the shot I got a severe case of the flu. I have had no problem with the shot, except my arm gets extremely sore at the injection site. Last year I asked to have it in my thigh, and I had very little soreness.Amy Quote Link to comment Share on other sites More sharing options...
ellen Posted September 24, 2006 Report Share Posted September 24, 2006 I just asked my PCP about the flu shot because I'm on Florinef and one of the many warnings, "patients should not be vaccinated or immunized while on fludrocortisone therapy" concerned me enough that I brought it in to his office to ask his opinion. My husband, who was with me, says he made a face when I read it to him. He said the flu shot should be fine. Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 24, 2006 Report Share Posted September 24, 2006 Hi,I never get the flu shot and I seldom get the flu. Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted September 25, 2006 Report Share Posted September 25, 2006 i was given all kinds of shots while still active duty and shots to prepare me for iraq... some of them made me pass out more but i don't think i ever got the flu shot. one of the various doctors i had told me to not get anymore but most of the doctors said that i should be just fine. i agree that it wouldn't be good to get the flu but i don't know what the flu shot would do. 50/50. good luck with your decision making.dionna Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 27, 2006 Report Share Posted September 27, 2006 I am one of the folks that does not get the flu shot (definitely do a search for 'flu shot' as the topic b/c it is popular every year if you want more info!).My POTS doc doesn't recommend the flu shot b/c he has had patients GET CFS from it.I've had one horrible reaction before I got sick, and before this POTS doc I did get a couple of flu shots and didnj't seem to have a problem.One thing for me though is that I am not really 'exposed' a lot...I am completely homebound and if someone is sick they can't come over! Both my parents are professors, but they get the flu shot...so hopefully won't give it to me! They do bring home other types of 'crud' that the students pass around! Emily Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted September 27, 2006 Report Share Posted September 27, 2006 I am planning to get the flu shot this year, probably in the next month or so. I am going to check it out and see if Medicare will cover the nasal mist flu vaccine - it is supposed to provide longer lasting coverage than the injection. Quote Link to comment Share on other sites More sharing options...
willows Posted September 27, 2006 Report Share Posted September 27, 2006 I've been having the flu shot for some years now , I've also had the lifetime pneumonia one to.Having had flu, bronchitis, pneumonia , pleurisy and a shadow on my lung the doctor feels I'm a walking time bomb if I dont have it.Hubby has it as well and this year my son Mike joins us in the queue .............talk about a family outing well at least we can all sympathise with out sore arms together Willows. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted September 27, 2006 Report Share Posted September 27, 2006 Have had the flu shots for several years even after the dysatuonomia become more pronounced. I'm fighting a cold now and feel miserable with the tachy etc, the thought of having the flu with this I'll get it again and usually it is in Oct. If I remember correctly they base when to give it on where the flu has been popping up and when they think it will get to certain areas. It also takes a week or two for the body to build up. Quote Link to comment Share on other sites More sharing options...
jenwclark Posted September 27, 2006 Report Share Posted September 27, 2006 I thought I'd toss this out there in case it's useful. Last year, a friend recommended xylitol to help prevent respiratory infections. You can get lozenges for your throat and also nasal spray. Apparently, it makes the tissue less hospitable to infections, which is part of why they use it in toothpaste. I'm not a doctor, and I'm not trying to endorse this approach, but I thought I'd give you the info in case anybody wants to experiment with it. Quote Link to comment Share on other sites More sharing options...
Lulu Posted September 27, 2006 Report Share Posted September 27, 2006 no way will i get another one, even tho dr g *really* recommends it for me. i got flu horrible 2 yrs ago w/o shot, so i relented and got the shot that fall. i became immediately sick for 3-4 days, just your basic POTS aggravation, and then in a few months i got the flu anyway! (a different strain than the one i had been immunized for). so last year i didn't get it--the shot OR the flu: however, i was a FIEND about washing my hands (even more so than most nursing students) with ANY contact with ANYONE did lots of Lysol spraying of doorknobs, light switchplates, phone receivers, blanket and towel washing and maintained my vitamins. maybe i was just lucky? or maybe those tactics worked well enough for me?i still ended up really sick at the turn of the year well into may, but it wasn't flu. :shrugs shoulders: probably a good thing i didn't get both...ack!i think it's really a personal choice and it is good to give your doc a listen it it's recommended for you. i'm glad that so many have found the shot staves of the flu for them. it is horrible to get it on top of POTS. healthy days, everyone!lulu Quote Link to comment Share on other sites More sharing options...
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