Sophia3

Got these names from American Autonomic Society's site. Don't know if you've seen these or not. California - Return to Index Annabel K. Wang, M.D. MDA ALS and Neuromuscular Center University of California, Irvine 200 S. Manchester Ave., Suite #110 Orange, CA 92868 Phone: 714-456-2332 Fax: 714-456-5997 Diabetic Autonomic Neuropathy Amyloid Neuropathies Frisca L. Yan-Go, M.D. Department of Neurology UCLA 710 Westwood Plaza Los Angeles, CA 90095 USA Phone: 310-206-8005 Fax: 310-794-7491 E-mail: fyango@ucla.edu Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Failure (PAF, secondary Autonomic Failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Sleep Distrubance and Autonomic Disorders

Glad he is taking things seriously and ordering more tests. Hang in there!

OMG! LMAO...Thanks for this, Nina. I have been laughing so hard, I am crying tears. Oh, boy. Hilarious.

ok, thanks..I went to link and signed up..only to see I have a doctor's appt that day..oh, well. Wouldn't learn anything new after years of this anyway. Hope it's informative for somebody.

Have no clue what you are talking about. How about a link?

Our ANS issues are like fingerprints. UNIQUE! What helps one will not help another. I've known folks with horrible POTS who drink coffee with caffeine all day to FUNCTION at work or even around the house if they have kids. If I drank to much would give me shakes. Then again, I have tremors/shakes that vary wildly with no caffeine interference. That said in the A.M. unless queasy I MUST HAVE COFFEE w/caffeine. I get the Maxwell House LITE with half the caffeine as I detest weak coffee flavor. I miss drinking real coffee and better quality but MH works for me like medicine. I might have a glass in summer time in afternoon and make Iced Coffee. Coffee is my friend. Oh and Decaff can affect me too..with bladder stimulation ...its the other xanthines in the decaff that does it.

I think that would be easy to do as well, are you kidding? With brain fog anything is possible. I don't know your situation is there any way to label milk jugs as a note like "ONLY SERVE in green glass or coffee mugs?" ...to help you so a glass of milk is NEVER used in the glass your son uses for say soy milk or rice milk or almond milk. PUTTING huge note on things as reminders are helpful (use black marker) Also put note on cabinet only certain glasses or mugs for dairy...just an idea. or put notes on glasses to use certain milk products or alternatives...course that is not infallible either. Me I would probably have to learn to live with alternatives...I do love Almond milk..it even goes well with Oreos or other chocolate. Be kind to yourself....this brain fog is hard to explain to those that don't have it. Years ago I decided it was like "mild intermittent Alzheimers"...and I by NO means mean to insult people or caretakers with that malady....I can re-read articles or re watch tv shows and get halfway thru only to realize I have read or seen them before! forget my phone number or age....sheesh.

YAY! never had all that testing but DDAVP helps me too, less bathroom stops and less chapstick...less thirst (but I sill have dry mouth issues) Anyway, SO good to see good news shared.

Ana It CAN RAISE your BP or prevent it from dropping..but sometimes mine is NORMAL and I am tachycardic. THUS midodrine fills up blood VOLUME temporarily..which helps us 'get along with gravity'..least that is my situations.

midodrine helps me immensely!! I just can't afford it as i can't afford Part D medicare. Mido doesn't just help with the low Bp issue but kind of blows up things like a balloon so our body feels like our blood volume is higher. Only way my brain can think to explain it but hope this makes sense it stinks they stopped the pt assistance program..that drug is a quality of life thing for many people! difference between working and not working for those still able to work...i've not worked in years but it helps me get out for rare social events

WOW. Just saw this. Hope you post an update soon!

Hey Ruekat My BP and HR can be all over...from BP spiking when I first stand in recent years, to dropping in recent weeks...HR highest when standing or dehydrated...can jump 40-50 BPM just getting out of bed! Thus my coffee maker is 4 steps from my bed, ready to go in the morning. It's disconcerting but I guess after years of this stuff (19 but official ANS dx 1998) I don't take my readings much EXCEPT when I have knew symptoms and numbers...like I sometimes now show Orth HYPOtension and never used to. By that I mean it shows up immediately "sometimes". On my TTT years ago it never dropped, just screaming HR. BUT now over the years lying at rest will show low bp 86/46 and sometimes normal HR in 70s or 80s. So it's nice to document changes if you have new symptoms. Ask for stress echocardiogram if that might give an answer. Otherwise, check meds, salt/fluids and stuff. But my HR can jump simply turning over in bed thus the name "Postural" O.T. oh and cleaning a cat little box out is TOUGH somedays to..the bending over. Good luck with dealing with your situation and getting answers as you see fit.

For years I had a HEALTH TEAM manual inflate with auto readings that was accurate..but beeped loudly as it counted my pulse!! then it finally wore out and would not deflate or inflate correctly. Often my hands are weak and it's tough to pump something up when you are a lone and sickish. somebody bought me an Omron Intellisense as a gift for keeping a medical diary for a science project. I think it was over 100.00 at SAMS or COSTCO. compared to my old one it's close enough and accurate. And it saves the date..and best of all, I don't have to use my hands when hurting to pump the thing up repeatedly if I get errors (which happens but few nurses can count my pulse correctly either! or exercise machines at the Y but I digress) Just get something that is consistent for you. If you need a comparison take it to a doctor's visit and see if they will let you use it before or after a nurse checks yours on a doctors office version. that way you know what to allow for "Mileage may vary" between machines.

I've heard this story about the Swine flu all over the place in the past few weeks..and from a couple of pharmacist I know. the FEAR MONGERING is part of the drug industry to PROFIT from rushed to market vaccine for starters. i don't take medication unless it's been on the market at LEAST 5 years or longer in this country or another one. Takes that many years for the side effects to get noticed. I heard a doctor on TV being interviewed about the drug industry in this country make a similar statement 10 years ago. He will not prescribe new meds to patients as he treats them as he would his family. He will not give new meds to family members either....I think that says a lot about how fast people jump on 'latest new drug bandwagons'. I am not one to jump on new meds. HOWEVER some new meds here have been safely used in Europe for years (I think that was true with DDAVP or midodrine years ago..forget which one) Our immune systems and body chemistry can change from heartbeat to hearbeat with this junk so we have to inform and make rational choices for each of us. so I keep antibacterial cream in my car and wash my hands when I leave the grocery or Y from workout. I did not go to the link above as I've already read and heard the side effects discussed on local talk radio and news sites. I try to avoid one main place that might have an agenda either way. Read all sides and decide for ourselves. Some here swear by flu shots...some swear at them.

I tried this for three months for another reason and it did not help me. There are PUHLENTY of carbs eating gluten free, trust me..if you eat the GF breads, baked goods, still plenty fattening so it's no weight loss diet. Gotta watch everything..but the GF breads also bothered my hypoglycemia so I had to pay more attention...eat with proteins/some fats..just like I do gluten based breads. Some of the breads are denser and more carbs per slice than other breads.. GF breads are expensive and it's worth going to a GF forum to find the best brands of things to try.

i no longer can tolerate soy but the prepackaged, junk food soy is terrible for women as we have no idea the true estrogenic properties ("nutrition bars" ? Soy burgers, other fake meats, shakes,pills , other things) Tofu is eaten in Asia but only in tiny amounts as garnish in soups. Somehow Soy has become trendy and not good for women except in natural foods in SMALL amounts Nobody drank soy MILK years ago either..so I would never eat that stuff all day long. It's a shame what gets promoted as natural when it isn't or good for us cause it's natural..when it isn't. Poison Ivy and asbestos and radon gas is 'natural' so you really have to read up on things. Website are notorious for promoting things..as are some shows packaged to look like 'fake talk' but really infomercial. We've gone from not enough info society, to overdose info with agendas, fake studies, hype, and fear mongering tactics over taking common sense. (first step, cut back on the news and HOW you get your information~~ most all news lives to scare people) But back to Florinef, I DID know it could interfere with estrogen supplements and women have to sometimes cut back on it. sorry to meander off track but it happens when your mind is not great with short term memory and focus. not great with short term memory and focus.

Tilting head makes many WORSE. it did me though I tried for months. I since learned I have LOW supine BP. Tilting of the bed works better for SUPINE HYPERTENSION but I do not have that form of problems. Why Mayo continues to tell people this one escapes me. Makes many worse...I found this out in the late 90's but felt I HAD to try it since it's a non medicinal way treatment.

I get NO VACCINES and certainly not something rushed to market on fear mongering and $$ for drug companies. I know of a pharmacist who says this recent vaccine is terrible with some mutant straing. Just be careful and if you have to wear a mask over your face. wash your face and open windows in stuffy places "if you can". Biggest issue is for those with kids or who work. People need to STAY HOME when sick...companies need to enforce that but it won't be easy. Even w/o mercury these vaccines are horrible..same thing with that Gardasil (sp) they give to little girls for condyloma (sp) virus...some have died from that or gotten blood clots.

Most all of our neurotransmitters are n the lower gut. Also the electrolytes are sensitive here. Add to that the stretching and moving of the gut=SYMPTOMS! This is what laxatives do and some of are more sensitive than others. When I had a partial hysterectomy a couple years ago, had to do the bowel prep. It made me feel super spaced out (MORE than usual) dizzy and headache-y. Personally I can't do laxatives but I realize constipation is no fun. I would NEVER take any thing daily. Years ago there was an affordable Ayurvedic supplement, SAFE for every day to regulate a persn but I do not remember the name...been about 10 years...got some for a friend. It worked to maintain bowel health and not just as an overnight to get you going kind of deal. You may want to investigate something milder to your system. Also when I have had to do small enemas for surgery I get very symptomatic..so this bowel stuff can mess up many of us. What you describe is perfectly normal for "some of us." Good luck

WOW! I missed this original thread but i am glad you got through things ok! hope you have a speedy recovery! I had a hysterectomy 2.5 years ago, laparoscopically and the anesthesiologist just asked lots of questions as i was outside the surgery area...then I had to get up to go to the bathroom (my doctor had a delivery so my surgery had to wait!) my HR went up to about 150 which was normal after fasting and bowel prep..ugh (like things clean for abdominal surgery) The anesthesiologist came and checked my pulse and did an EKG. He said "how do you feel"...I said ok..he then commented how high my HR was...i said usually it's just 120 to 130 when upright. "He said I guess you get used to it huh" I said yes but I lie flat every chance I get...he said they are ready for bp drops and Hr drops in surgery as general anesthesia is working on the ANS...so they are familiar when things bounce around. Anyway mine went great and I was in the best mood for 3 days from the anesthesia cocktail! That had never happened in the two previous surgeries I'd had in the last 9 years....always was nauseated too...so anyway...it pays to talk to the anesthesia and give brief synopsis..so I am glad things worked out for you. Keep us posted...and show us a before and after picture..with clothes of course! Ha ..just kidding.

I just want to say as a person who was formally overweight my entire life (yo yo dieter) until I figured out what worked for me 20 years ago or so, I am one who has lost weight and kept it off with POTS due to fatigue issues and never "feeling hunger pains" anymore. Doctors really are more prejudiced to women when we are over weight and that stinks. YES weight is important, and exercise even ...if we have to do it lying down...we may feel lousy after doing it but it's good for bones and circulation. But to PUSH exercise as the fix is tough to take. ..YES it can help but can also trigger symptoms and for those of you that FAINT?? it triggers black outs...so that's a tough one. Not to get off track but even old friends that do NOT get my illness to the degree I wish they did..DO know something is wrong with Sophia as she was always heavier and fought her weight. Friends that last saw me over 20 years ago (RARE to get out much but they are shocked I am thin) Shame they don't believe us when we are overweight and sick but seen as lazy. I am very lethargic not lazy but if heavy, i am sure I would be labled as that by folks that don't get this illness...a couple of distant family members. and for those who get accused of Anorexia..it's a problem,too. Imagine starting a new doctor with either being too thin/and or overweight AND need open mindedness to one's treatment for Dysautonomia...unless you have good documentation..that adds a boomerang to this situation. Also many docs just sent tests/reports and not their personal notes...this can be a good thing as sometimes personal notes add insults (what they say behind one's back) but in other ways their personal notes are validating & can help other doctors understand. with HIPAA I am not sure what thats' done to the personal notes of drs aspect. after all their personal notes are either REALITY or FANTASY depending on how UNDERSTANDING the doctor is. Thus the complications in what to expect out of our doctor...knowing when to ask/demand things, when to change doctors or see if there is a compromise to clashes in philosophy when you are stuck with a doctor until you find a new one.

Great questions with layers or complexities and versions for an answer. I will try to make mine as short as possible. Internet is a double edged sword..but I always researched stuff long before the Internet. Nuturional books, vegetarian books, raw foods, etc. Used to get the CFIDS Chronicle in U.S. mail, researched books, etc. So I rarely went to doctors except when I had too and once I got sick...I considered myself enlightened, not self dx. I also grew up with a mom who worked at a hospital and my sister married a doc/surgeon when I was 8. So we knew hospitals were only places to be if you had to be there and even then PROCEED with caution. Now of course quality care is much worse but I digress! When my CFS doc of many years (always understanding but stopped "investigating") never listened when i said "I feel better when I lie down". I did not even know what that meant but it was baffling! ...then I saw an episode of DATELINE and Dysautonomia which was ME!! and found the NDRF site (this is when it was really good and well monitored!, had TONS of diet info and interviews with doctors) I was fortunate enough to have online/phone friends send me articles on POTS from other doctors. Well, my CFS doc dismissed TTT so I made the decision to change doctors. I had learned about Dysautonomia, had medical articles and power of knowledge on my side. One doc he suggested I choose from was a dead end. This doc, not good. Rushed me into hospital with problems HE FOUND on ekg in office--he said it was emergency!!~~, then week later at follow up, said my problems might possibly b helped by therapy. *&^% Then I did a letter writing campaign to doctors from yellow pages and one that worked with my brother in law (who was retired with health issues of his own) I summed up my 8 year history in one page, it took several weeks but I got a call from a few offices. One doc thought I needed to see an endocrinologist, called me after getting my letter and spent 30 minutes on the phone with me. He was my little angel (but also knew my brother-in-law so we had a personal connection) He gave me 2 endocrinologists names NOW one treats my ANS issues. He got on my first visit something was wrong with a poor man's TTT. (you can't FAKE that) Had I tried to stick with the jerk doctor who thought I could benefit from "therapy", I would be in a rocking chair in a mental ward. I think even a good doctor can get lazy on our same complaints so a fresh pair of eyes and another brain is always good. We are limited by choices some have in HMO's or if just on Medicare, like I am, & Soc sec.financial limitations. My current doctor is not threatened by things I read or find on the net as I have detailed reasons why I think it might apply to me. but on the other hand, for other docs, I know it can be annoying to have stuff from any old website taken to them. There is a line where we have to learn to advocate for ourselves without burning bridges, or insulting doctors. And or do that tap dance around EGOS of doctors. So discernment in dealing with docs is helpful. A sense of humor or asking the doctor to "humor me" has been done a couple times over the years but usually he ALWAYS agreed for a test after hearing my reasons. (I always take NOTES to appts) That jerk doctor that made me stay hooked up to monitors for 24 hours, barely let me out of bed to to to the bathroom, paid for a bad CT scan (it did not show my brain clearly due to tremors I could not control and CT did not function properly for all my scands. Duh) ordered some ultrasound tests (that did find some MVP insuffiency that we NO KNOW can be part of ANS stuff but not the cause) and then said I might be fixed by shrink therapy...He did get a scathing letter from me after that fact asking him to explain his answers & reasoning after "HE panicked" in his office and made me go STRAIGHT to the hospital to check in. He never answered me. BAD sign especially in this litiguous age we live in but I let him go and the anger. I also knew I could CHOOSE not to return to him since I had only seen him once before hospital and once after wards. Things get more delicate if one has seen a doctor for a while and gets a sudden change of attitude from a doctor. My CFS was still kind & gentle but NOT OPEN to a TTT. So, sometimes we have to go with our gut, what insurance will allow, our limited funds..and a doctor OPEN to fix things for individuals..and not just throw meds we don't needs in a one size fits all manner or say to "relax and take it easy". No easy way to answer your post w/o it turning into a long manifesto!

I don't have prescription coverage so always like to try just a few pills of a new med. That way if I dont' do well on one, I can try another kind without having so many extra pills for nothing. benzos vary GREATLY what with half life varations and such (Klonopin half life longer than xanax for instance or do I have that backwards? sorry very tired) But the diff meds can be worth trying but at the LOWEST dose possible. And I get the generics and they work well for me. I use .25 of xanax but started with half of one of those pills when initially used them years ago. I have used Xanax and Klonopin..the latter for sleep. but years ago Valium did not work for me and put me in a bad mood. But we are ALL different and our bodies are like fingerprints..unique..so what helps one may hinder another. and though in the same family these meds can work differently on our brains. My late brother in law, a doctor was given Ativan and it turned him into some maniac..and made sure he never got it again (he lived in a hospital for a while waiting for a heart transplant and that's how he found out his bad reaction) but another benzo, forget which, worked well for him.

Broken shell I sometimes have used low dose xanax but can't use it in this hotter weather..even with AC on in house we can't keep it as cold as I NEED as the xanax adds to symptoms. But yes it seems to calm down my gut by relaxing the peristalsis motion. BUT also to slow bathroom frequency, I got a tip from a girl who sees a Dr at Vanderbilt. Eat a tums or rolaid tablet. It helps slow down the digestive juices starting in the stomach...and "may" calm the lower G.I. tract thus can slow the bathroom frequency issue...not necessarily diarrhea but the numerous trips to the bathroom, in my case. I usually ALWAYS AVOID antacids as I don't get heartburn and we need to have all the digestive enzymes we can for the instrinsic factor and other things to absorb nutrients. Especially as we age. Anyway, this tip may not help you but it was such a little thing that I tried it once and by gosh it helps me. I usually eat one or two when I know it's gonna be one of those days and while not foolproof, it often helps. Good luck.

Well I know it's more stuff added to your plate, but.... be happy he is TESTING you to search for answers. I've also been concerned at how often you pick up things but I know you are around lots of kids and co-workers...the latter forced to come to work sick!!...hope that rule changes with all the flu talk going around in the news. And after what your son has been through, too. I hope you get some answers since your son shows the IgA deficiency. I know the testing will be tiring but it's a great opportunity for a doctor to order such things. Keep us posted on your answers.