Sophia3

Angela If you've all had the flu shots before and are fine that is good news. Also YOURS is an extraordinary situation. I remember the scary time with your oldest and can not imagine that. Seriously. When I was talking little kids I meant very young. Also pre existing issues like breathing problems are not the norm and I remember you have to get your boys breathing treatments sometimes? After what your oldest went thru, i would be asking lots of questions to the docs and probably getting the shot for the entire family. But the day to day experience for you as that happened had to be a nightmarish limbo that you thought would never end. AND putting up with hospital nurses....exhausting for MOM!! The H1N1 stories have all sounded like what your son went thru...breathing problems, fevers, lots of fluid build up on the lungs. I have to say if I had little one's I'd be tempted to find somebody to home school them for the next 5 months. Ha, easy for me to kid. My cat's don't go to school. But they do fix me dinner at night. HA! Don't I wish!! Keep us posted when your family gets the shots to share reactions.

I know LOTS of people that would not take the H1N1 shot. Not enough known about it. NOT SAFE for little kids, or pregnant ladies. Some doctors and pharmacists I've read articles on would never take it..so I dunno. One said H1N1 is mutated strain...some articles say no. So who knows. stop panicking, wash your hands a lot (don't shake hands when meeting people if that concerns you) take vitamin C....Do your homework. I've never taken the flu shot..some in my family have with horrible results ..but my family AVOIDS DOCTORS & HOSPITALS at all costs! Even my ANS doc says that's the last place to be when ill (hospitals!) Don't we know. I remember a couple years ago they said the Bird Flu was going to wipe out the country and be VERY CONTAGIOUS!! so...you just have to go withcommon sense and what is right for YOUR BODY!!

Good luck. I know the research, reading, searching and COMPREHENSION with stress can make this quite the chore for you. Hope you find something that helps you out.

Sorry to hear this. That stinks First, if you need meds, see a doctor NOW to get supplies for up to 6 months or more (depending on the drugs, some refills expire after 6 months, some a year) Individual ins policies ARE expensive and if you have a confirmed dx of ANS problems will be held against you (My room mate sold private health insurance policies for years and used to get heart sick at situations! folks laid off in middle of cancer treatments and needing brain surgeries! Cruel situations ) Pre existing situations and all that. Anyway, look into all your options as states vary wildly. Are you able to get another job or thinking of applying for disability? I am sorry, I can't remember your history. Good luck and keep us posted and again for any meds, make an appt NOW to get them filled.

80% get ANS stuff post viral. 20% are born with it. Many born with it get worse from triggers that don't always make sense. Looking at my child hood for SURE I was born with my issues...got sick as a kid on park rides/car rides/crippling shyness (like perpetual stage fright-ANS disorder) Had difficulty making friends until I was in Jr high school....could not play wind instruments including harmonica, could not blow up balloons without headache/dizzieness etc. would vomit when I got upset in those days, too. Now I just lose my appetite instead or when UPRIGHT too long.. there are cases of Post Polio virus causing problems in people. so post viral issues have been around...what's caused POTS we don't 'know...been around FOREVER just could not test for it...Civil war days called it Irritable Heart and other things . . .

Interesting THEORY but I've heard so many over the years...hard for me to get excited. there was something that Kutapressin helped? then what was called a "stealth virus" 15 years ago or more...then, well I forget. like ANS issues, CFS is not SAME cause for everybody thus no real answer. I STILL remember being told I had "Chronic adult mono" before they called it Chronic EPstein Barr...so, color me old and cynical and dealing with this since 1985! I also remember Dr. Cheney once saying--about 19 years ago, but never heard the follow up, that HIV was not the sole cause of AIDS! Yikes...so I never know what's behind the story..and behind that story. But if they can sift OUT something speficically to help a few, that's a start

Sorry but I have to agree with firewatcher. Asking WHY is useless but we can CHOOSE HOW we respond..what can we do...even if ALL we can do is tu change what is between our ears. As one who's battled this for 18 years and gone from independent living to a friend taking me in, if I kept asking WHY i would be in a mental hospital. if you are spending too much time asking why and are new to this, PLEASE seek counseling and learn to cope better. We may be extraordinarily limited to our former financial/social freedome, we CAN CHANGE OUR ATTITUDES! & yes there were NEVER be a magic pill to learn to deal with your reality.

Sue what's SIBO ? I have found probiotics to be of no benefit when I tried them many, many years ago..they were pricey then! Came in liquid form and a freeze dried version that allegedly with stood stomach acid that could ruin the liquid version. we are going back many years ! ha so thus no need to feel I wanna try them now. Very trendy but up to individuals whether to help or not. Also if you do NOT have gut issues, many have said they can start them. They ain't lyin'

Sorry for the loss of your bird. Be kind to yourself in the next few days...tough to lose a feathered or furry loved one.

Thanks Cat Lady I have learned ya never know how you come off in email/blogs/ or message boards in print! ya, SSRI's are turning out to be more dangerous than very old time anti depressants..but the old fashioned style usually add to our groggieness and orthostatic intolerance. And the news SSRI's are shoved aimlessly at the public on ads! So folks really do need to be informed and as YOU know never take meds blindly "just because a doctor says so." On the other hand, years ago I heard of Fainting folks getting so much HELP from SSRI's that I would've taken them also..like folks going from fainting daily to maybe a couple times a month, using Zoloft or Celexa. Hard to argue that. Good luck

Cat Lady Just used whatever YOU NEED! I was not trying to diss you on the Ambien..just saying whatever works for different people. Folks like to hype addiction issues all the time. Doctors love to push some drugs over the other and I never understood that. Well try walkin around with no sleep. we need SOMETHING to help us sleep..not feel hungover but to get sleep. I'm just saying some think ANY drug for sleep is horrible. I say "do your homework on ANY drug" Study risks/reward ratio But for the record, I think newer drugs of last 10 years or so are more worriesome than something that's been around for DECADES but that's MY thoughs and my choices. Also my doc did speeches for ZOLOFT (my old sleep doc, not Ambien) I need to go edit that..he thought Zoloft was so helpful it should be put in the water supply!? ha. He was big on Ambien as that is what was in some literature for sleep. I told him how melatonin often helped me (not a one shot deal but had to take it a few days in a row to get the effect) He said many doctors "argued" over melatonin, what dose,if it helped, what time to take it, yada yada. The Roofies is just one arrogant doctor that told somebody Ambien is terrible. Yet so is speed or amphetamine type drugs which are handed out like tic tacs for many with hypotension. So sorry if you thought I was singling you out Cat Lady..I simply met you do what YOU need to do and the heck with what anybody else says. Hope you get some sleep.

it is more important to find SOMETHING that helps INDIVIDUALS sleep than to listen to experts. I've not had refreshing/quality sleep in decades. but losing more sleep=Worse POTS. I use a med to calm GABA receptors & works like a charm most of the time. Klonopin. Some docs don't like Ambien and claim it should not be on the market and it's like Roofies. Many docs have differing agendas/mindsets which is fine but don't make a patient suffer with more insomnia due to your ego. So, that's my two cents on this subject. My sleep doc I used to see really pushed Ambien but he got paid to do SPEECHES for them but even he finally understood, Klonopin wokrs for me. Also popular drug for RLS Restless Leg Syndrome.

if this is for Social security dis, YES, normal to make one jump through hoops. Annoying but as others said, that's the point. Persevere. JOIN Disinissues group for help!!

I TRIED CoQ10 a couple years ago and had FAB results for about a week (was able to help paint a tiny room) but then it kept adding to my pre-existing insomnia issue (which it can do) and I was on a low dose. I've heard its quite safe but the key is A REPUTABLE SOURCE as in all supplements. My late brother-in-law took it after his heart transplant for years, at his surgeon's suggestions. So it's not one of those baloney supplements..it CAN help...worth a try but kind of pricy for some of us. Good luck

sorry to hear this..I was gonna just suggest benadryl. I HATE FRAGRANCES as we never know what 'they contain' and frankly, I HATE SMELL in everything, especially my makeup..especially lipstick. It's not one of those lip volume plumping deals is it? I've heard those can burn...anyway, I hate how Pricey or cheap make up has junk in it..even the ALL NATURAL stuff smells like perfume and I can't wear it. Make notes and CALL the place where you bought it and ask for refund. If put on credit card, that gives you LEVERAGE for refund as well. Sorry about the reaction. Hope the benadryl helps...HYDRATE!! that stuff is very drying

careful with salt. I have eaten very salty diet for years but salt water ALONE on empty stomach is used as emetic (induce vomiting) and causes diarrhea for many. Something most of us don't need added issues too..so be careful. I drink gatorade or DILUTED gatorade (I buy the orange powder) and add literally a pinch of salt. Salt tablets and salt in water is hard on the guy. In canned soups it's ok as the high ratio of salt is COOKED into the foods..thus the minute bits of salt irritate the intestines...just like salt tablets caused me much discomfort..and are hard on insides. If you live in area of cold weather and salt is used on roads, you see what it does to car parts!!

I take the generic and have since I lost my prescription coverage in 1993. generic is FINE. Also I only take it at bedtime so potential for addiction is not same than taking all day long. Either you are an ADDICT personality or you are not. funny nobody mentions true "addiction" properties of NEW drugs on the market and SSRI's etc. me I will try an older med with a long safe history over the junk now all over TV being PUSHED at peeps in advertising..or the latest posters at the doctors office. My doc even calls drug companies legalized drug pushers with their tactics. oh and benzos vary GREATLY...I tried Valium 25 years ago for muscle spasms and it changed my personality & made me crabby! My late brother in law, a doctor was given Ativan & was out of his mind on it and switched to xanax and was fine (when living in hospital waiting for hrt transplant, he needed some meds for testing) Yes there are horror stories but you just need to do your homework and see what works for you...our bodies are like fingerprints...unique experiences to same thing. Just be aware and never blindly take a med just because the doc tells you to..but most of us know better than that Good luck. Oh and my tip..always TRY a new med when your doctor's office is OPEN..even if it's a med for sleeping IF you are afraid of side effects...or call your pharmacist.

Been taking Klonopin for sleep since 1991..between ,5 or 1 mg as needed NIGHTLY. No problems. Been saving grace for MANY. "NORMAL sleep meds" do not do squat for me. EVER. And klon been around for YEARS. Don't let anybody whip fear into you.

thank you so much !

I've only seen ONE of these News letters. Where are they at on this site? I just have this forum book marked & have not seen many newsletters!? Are they only read via email? thanks

Ludicrous! Leeches are one thing...they are OUTSIDE the body and can do lots of good work. But setting off critters inside? I don't think so...our "Automatic system" is way too off kilter to know the reaction. How are they monitored and eliminated if they cause problems I also know hookworms and the like can create HAVOC with deadly consequences in dogs and cats...and they have stronger digestive systems than we do. And I thought that old Drinking urine therapy was weird.

WOW. a doctor that goes to the waiting room to explain to somebody else your situation?! Indeed we need to clone her. Hope you get to see her Tachy.

my case can't be answered in such a poll. In mid 80's started getting sick and missing work. Then had to get jobs working late hours in jobs. In 1986, told I had "Chronic Adult Mono" which was controlled with lots of sleep on weekends and crashing after work and maybe going out socially to hear music, ONE night a week. Then this all progressed, into many variations in 1990. in 1991 I got Soc Sec for CFS (Chronic fatigue Syndrome) then I felt worse and had to change doctors 3 times to get a Autonomic dysfunction dx. I had a TTT in 1998 but months before that, my current doc "UNDERSTOOD" my gripe of "when I stand up I feel worse, when I lie down, I feel a little better". My "CFS" specialist dissed that gripe and said the few pts he sent for TTT gave no answers...sigh. Don't get me wrong, he was kind and compassion for 8 yrs but NEVER investigated other things. Thus I did not know how to answer the poll. 8 years after disability? Or 13 years when I started DRAGGING my rear end thru the work day and sleeping whenever I could?

Always great to hear of GOOD drs. experience

just wanted to echo the sentiments and say I am sorry for your loss.