Sophia3

I have not sweated in hot climate for years! I may a little bit under arms or with cold feet when not appropriate (like when cold/nervous) Now I am in full blown menopause (no estrogen and FSH at 132. I've experienced hot flashes in last 3 months. (Exercise is NOT HELPING them AT ALL by the way and I've even way stepped up my routine but I digress) While not drenched, I do get to perspiring on abdomen, head, under arms and one night had to change night shirts. Anybody else experienced this? MY ANS doc just thought it was interesting but nothing with my body suprises him. Good news is when it hits at night this cold weather/cold house doesn't bother me. My room gets down to 60 at night. We keep house cold due to utility bill & DRESS in many layers, turtlenecks and stuff. Anyway, I am kicking a## & taking names at the Y and hope to improve things with exercise. Will update in a couple of months. Vanderbilt used to claim women got 'better' after menopause, others disagreed. in 2001, Dr. Grubb just said to 'expect big changes after menopause..probably for the worse'. Well, exercise tolerance is improving though I do need low dose gabapentin to help with post exercise pain/flu like symptoms but is ok trade in order to HAVE BETTER EXERCISE TOLERANCE! Also somedays all I can do is drive down the street to the Y and exercise but it's been my MAIN PRIORITY!!!! so it's been working for me. But back to sweating, anybody else notice changes in menopause. Thanks

Is there a way to READ THIS without it being in a tiny box? Print is wayyyyyyyyy to small for my eyes and enlarging it makes for seasick scrolling? I do not need to download anything until I can read it. Please advise the trick to reading it and having it look like a normal article instead of in a tiny box. Thanks

Stacy Yes I know. I've the hyperadregernic pots and my BP can Spike BRIEFLY Initially whenstanding and I have to lie down to take it again. I also have LOW BP after resting, sleeping, trying to exercise. Was simply stating checking your BP ONCE immediately after standing is not enough. Yes it can wax and wane. AGAIN I go back to Dr. Streeten, the father of Dysautonomia as many called him, who studied this stuff for many years. He came out of retirement to work again when he found Dr. Bell was getting many odd BPs in his CFS (Chronice fatigue pts) But we could go on forever on the rare/normal specificities of dysregulation of BP/HR. Thus why one needs to STAND for long periods of time OR to have a "Proper tilt table test" which is "Properly interpreted". Two different docs from same group interpreted mine WILDLY because I did not faint but one was a d&^*%&@ who knew nothiing of the Vanderbilt definiton of POTS which was my original answer to whomever I was answering. Also folks you do not need to quote everybody when answering aquestion. It's tiring and I don't come here much due to eye issues that make words a challenge. If you hit ADD REPLY you can just add to the topic. if you hit REPLY only it quotes entire posts or parts of them. StillGettingARoundNewDinetSophiawithSoreEyes Peace :-D

I find doctors who OVER simplify things to be disturbing to those of us with true gravity inducing problems. I've gotten emails that Dr. Yan is not that helpful. From DINET's own website link is this which explains her approach. Might be worth a read and asking around to folks in CALIF who've seen her? Not trying to start anything here but if traveling is difficult/impossible due to nausea/expense, might want to take a gander. http://www.dinet.org/physicians.htm#United%20States

That kind of bp taking is NOT enough. That's more for orthostatic HYPOTENSION. POTS is just heart rate escalation..with small or no variables in BP. Others, as mentioned have DELAYED BP drop after being on feet a long time. Tell that Dr. to read the work of the late, great Dr. Streeten. Father of Dysautonomia. He is on the NDRF conference tape from 10 years ago. He mentioned having a patient stand all day LONG in his office with a nurse present. Dr. Streeten said Patients don't tilt they stand!! But need to be monitored for long periods of time.

Thanks for the answers so far. My family & friends can't possibly imagine my having to do jury..they should follow me in my house on a camera to see my limits. HATE getting this kind of mail on weekend.

I will have to watch the repeat as our DVR rebooted at the beginning of the show and takes 15 minutes to reset. (Taping the IRL race while house mates gone so we missed several laps but I digress) I did see the last segment of the CNN show and must say this. If a woman has cancer and wants to have surgery to remove body parts & organs, fine. It's YOUR Adult decision. But the fact she BURDENED her little girl with the fear SHE might 'have this gene' horrified me! WHY would you dump that info on a little girl? I called my sister ( who chooses not to OWN a tv anymore cause of the junk on it ) and asked her if she found that offensive and she said yes. She raised four wonderful successful kids with challenges along the way. NEVER would she tell a little kid "You have this gene & may get THIS ILLNESS & possibly die." So I hope the earlier part of the show was not like that...i caught a bit on another tv about the stroke person & recovery...but RUINING a kids childhood by creating such fear with such medical info offended me. TESTS are not always %100 accurate. Ok. off soapbox :-D

I've been VERY FORTUNATE that my ANS doc, an endocrinologist, has been very open and NOT threatened by ANYTHING search I've done over the eyars. Maybe it's cause I've been at this so long...and I know how to get good info & not "jump on some bandwagon" ..plus I hate getting on NEW drugs but I've suggested older, substitutes...plus I do great homework if I do say so myself. I've dealt with some surgeons that 'sigh or comment internet full of bad stories...well duh like many surgeries not needed or scared into patients..like you will go blind if we don't. . . My only fear on the CNN show is, isn't PubMed a pay site? or lead to many pay links for articles? OFTEN I've come across a 10 sentence abstract but you must pay a huge one time or annual fee to read article...Unless I am thinking of another site. Thanks for the heads up on this show. I will watch it Got it on the DVR as I type

I open my mail late friday, Court is close, emailed my doc only to get bounce back 'out of office reply' until Tuesday. He is very supportive of me and I have ongoing new issues we need to get tests on...mild goiter (tests normal as have been ultrasound) protein in urine so going to retest that, just haven't done so yet. I was very ill for days and couldn't eat anything but brown rice, was nauseated & horrible joint pain and bathroom problems...then got a bit better...My doc wants me to get horribly symptomatic again before testing me since SOMETHING seems to be random pattern. ANYWAY I did a search here at DINET and not much about Jury Duty. Some say they were forced to serve (HOWEVER those people were also working full or part time so that's different than HOMEBOUND or semi homebound, leave the house for horu or 2 at MOST! unless visiting a family home where I can lie down!) I want to hear from those of us semi housebound & DISABLED (we often can't drive or leave the home for several days in a row)other times we can drive short distances. Spend all my waking time reclining or in bed for 80-90% of waking time) Constant pre syncope if I am forced to sit up or stand. can't stand hot rooms. Severe joint pain/fibromyalgia so cant' lie or sit in same position for more than an hour w/o fidgeting. Cognitive impairment, difficulty paying attention. I would remind my doctor of the following, I need to attach letter from him before I turn in paperwork. Sorry if I am repeating myself...HORRIBLE short term memory too. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``` Can't DRIVE many days due to lightheadedness/dizziness & no bus service. Taxis are scummy & unreliable between 2 cities for one. Car ride can cause motion sickness. Fatigue & cognitive impariment makes difficult for me to pay attention, lose focus, get lightheaded/bppv vertigo & need to lie down flat for feeling to pass? Nausea, tachycardia spikes & blood pressure can spike & drop, causing visual blacks & PRE Syncope (which nobody will understand) severe nerve, muscle pain if I sit in one position for more than an hour but with FEET ON FLOOR still issue. On pain meds which fuzzy my thinking on bad days HORRIBLE FATIGUE but I would "Look normal" if I had to appear to speak to judge. How to explain 'invisible chronic illness' Bathroom breaks are not enough to excuse either but my full bladder can cause dysautonomia symptoms.

Thanks all. It's for a friend who's mom has early Alzheimer's. So they are having a family meeting when a brother flies in from out of town to see what's next. A son does live very close & checks on his mom daily...but figuring out if she tooks pills is no easy feat..so it's a complicated situation. Appreciate the tips. Medicare is a drag with NO COLA increase for 2011...second year in a row...even though our costs have gone up!!

Medicare will NOT help in this individual situation. Thanks. They are going to get outside help in. Appreciate the feedback.

I know MediCAID pays for much more than Medicare but this question is for Ohio Medicare pts. If you live alone, and forget to take important medication, will medicare pay for somebody to come by daily to make sure you've taken your medicine. OR to help clean your house. I've seen somebody with ANS issues talk of this but can't remember if it was church people helping them out or some Medicare agency. I do not think Medicare does but a friend is asking me this for his mother who is 75. She does not have Dysautonomia per se but gets fatigued easily and too stubborn to see a doctor for her sudden inability to think and do things. could be too low BP from medications or early dementia. ..sigh...this is the Reader's Digest version... Anyway, they live in Jefferson County, Ohio. When my elderly mother was very ill with temporary dementia due to a medicine, we had to check in with her ourselves. If she FORGOT to take medicines, some local person came by from elder care and said to give her a pill box. HECK that thing was confusing with it's pop up lids with days of the week listed. With MY BRAIN fog I would've gotten confused. Anyway, just wondered if some fellow Medicare folks could help me out. I wish I could get somebody to come do my laundry/cook but can't afford it. . .But I wanted to ask this question for a friend as his mom is hours away from him! thanks in advance.

jump I made quinoa for first time. Turned out very mushy. ugh. No rinse, pre washed brand so it would be easier (standing & rinsing sounded tiring) I followed directions 1 cup Q to 2 cups liquid. I DID substitute 1/2 cup tomato juice from can of diced tomatoes so don't know if that was bad sub for 1/2 c of water or what. Later read online many use LESS water than directions call for by 1/3 to 1/2 cup per instructions. Could be like rice & vary depending on how old package is...I'd just opened it but of course, never know how long in a warehouse. I made myself eat a serving due to veggies I'd added. Ancient Harvest brand. Will try again with more seasoning & LESS water. My sister gave this to me..she's out of state or I would call & ask her what I did wrong. Pat Brown rice & black beans are a fave. I also like the pre boxed Zatarain's Red Beans & Rice. Just add water & butter or oil & cook, stirring occassionally for 25 minutes.

Thanks, nowwhat. I find food processors a CHORE to clean and lent mine to my sister who thought her old one broke but it was from making a raw foods snack that just slowed it down. (Vegan Raw Balls-gross name- which is Carob balls made with almond butter, ground dates, maple syrup, almonds, carob rolled in coconut. LOVE THESE; She got it from somebody that got it from that Alicia Silverstone Kindness Diet Book) I'd like to find a modern chopper...preferably one who looks like George Clooney, just kidding...not really but I digress) I need to go to Costco and get some frozen veggies for sure. Rarely get there but will take note.

bean tip. Incorporate slowly. do NOT eat more than 1/2 cup first few times you eat it. Add FAT to the beans to help digest easier. ALSO I take ginger root capsules BEFORE eating beans. 15-30 minutes ahead with water. Then take 1 after meal and or couple of activated charcoal. That's helped me adapt. Otherwise made me ill. I've not made lentil soup in ages & will do that in colder weater. I made quinoa tonight first time. Ugh, mushy. will use less water next time. I got the q that is no rinse. Followed directions but read online you can use less water. vert Bland & will season veggies/quinoa (pronounced KEEN Wah) next time MUCH more. THanks for the feed back so far. WE MUST do this to help cook more basic, less processes. Don't have to be vegan/vegetarian FULL TIME. Just cut back when you can if you feel better eating this way. I eat small servings so don't get huge impact of lots of carbs. I detest the mega food industry and feel better eating this way. Personal decision but any food prep for BASIC, wholesome, sustainable food ways I welcome. Honestly, this washing & cutting is exhausting. p.s. Good way to keep Cilanto/Parsley fresh in fridge. Treat like flowers. Trim ends, & put in water covering stems in small glass jar OR I use coffee mug. Cover with small paper bag. Change water DAILY. I kept Cilantro 8 days before it turned a bit yellow, lost scent/taste. FABULOUS way to keep it from getting soggy. I just use a little at a time. Parsley I hear works for this as do OTHER fresh herbs. I just discovered for Cilantro. Works. & nice to add fresh green for garnish for visual appeal, too

Ok. Standing is exhausting for us some days more than others. I am a flexitarian which means eats animal products many days, some days go veggie or even vegan. I can NOT do Soy or gluten stuff like Seitan or veggie patties. I DO eat Sunshine burgers for short cuts sometimes but PRICY (sunflower seed based, no soy no gluten) I can eat gluten, just not concentrated forms. I can eat white bread ...OR that expensive sprouted flourless bread. HOW do you vegan eat basic, whole foods when PREP time is our enemy? If you are bed bound, some days, live alone, what do YOU EAT that is vegan/vegetarian or macrobiotic based? I don't do the frozen pre paid meals. too expensive and I want to make my own stuff. Start soaking my own almonds to make almond milk and make them easier to eat. I know this is possible to do but HOW to do it daily and get in the habit. To be so organized that thinking a day/week ahead comes naturally. I am not talking making bread from scratch stuff but basic meals. I don't want to eat beans daily (should only be 10% of one's diet anyway) but vegan cookbooks don't have pictures of foods I am not familiar with nor tips for gravity challenged. Any help would be appreciated. If this has been brought up before, please post link. Or DM me if you have links that DINET does not allow here. I read many vegan blogs but Mama Mia they are labor intensive. Like Indian cooking lots of ingredients, washing prep time. I don't have kids to help and house mate works 60-70 hours a week. So I'm on my own a lot. Cooking may not SEEM like Dysautonomia issue but we have to EAT and if standing in the kitchen is a challenge we need to share. I can make things the way I eat NOW in steps. Mix up salsa steps at a time, marinades for meats, etc, or cookies step at a time. i. e mix dry ingredients...rest a bit add rest of ingredients. make a few cookies, refrigerate rest or freeze. But BASIC vegan meals or vegetarian are ok...but leaning towards going vegan more days in my Flexitarianism. Sorry if repeating myself. Tired.

Good Luck Nina! with such a HUGE site & membership, I can't imagine all the stuff you are putting up with behind the scenes! It's all I can do to keep up with my stuff...blogs, Twitter, etc Glad Midodrine is still here for those that need it !!

i'm also clueless with this new forum..but I'm at the age I detest changes/upgrades as it always makes a site more convoluted to this old broad! Thanks for th article

Sorry don't come here much and the new site seems confusing in the way it looks to my visually challenged eyes. Most folks feel worse after blood draws and I am ONE of those. get flu like symptoms within 4-7 hrs, depending on how much blood was drawn. I need to really hydrate, too. If you have hypovolemia, low blood volume, one can be sensitive to having 3-9 vials of blood drawn.

I read months ago Arizona Mayo no longer ACCEPTING MEDICARE...so need to be sure. I've also read MIXED reviews on Mayo, some great, some not, some horrible. Not sure HOW Dr. Blair GRUBB could be called a "nobody" in the world of dysautonomia. Good luck Ken. Sounds like you're in a tough situation. . . sigh. p.s. not sure what to make of this new upgraded site. Very discombobulating and looks COMPLETELY diff in my browser...plus I have visual challenges now and get easily overwhelmed

An ER visit plus tests done immediately could easily be thousands of dollars. Hard to guess depending. Stepping foot in ER is $250 and any test or venipunctures or IVs add up. I did NOT go into the ER but an "outpatient" surgery, even tho I spent the night but was in LESS than 24 hours, was $16,000 for a hysterectomy. That was the hospital bill. Did not include doctor bill or the anesthesiologist or pathologist. Those were billed separately. This was three years ago. I asked for and got a detailed bill breaking down everything. It's free & there were duplicate charges and charges for pills NEVER given to me at $10.00 per pill The paper sheets to cover you in a surgery? $600 a piece. 6 were used during my surgery. My IV bags were $200 each! saline! THAT's how outrageous mark up in cost is. And that was normal hospital setting. Not sure how much more things might cost in ER area. Those are like two different worlds! I realize this is not the same as a cardiology work up. THAT's not surgery, but ER trip EASY $1000 would be my hunch. Especially in that part of the country where things are more expensive.

FYI for new patients (I've been at this since 1990!) No news =no response= Zero Information. As somebody else said, could mean they never looked at your chart. Keep pestering. Contact ombudsman w call or certified letter. Good luck.

Dana Never heard of WWP issue so did a quick google. Apparently it is a condition that means nothing thus why do doctors bring it up? which is the same thing this doctor said when asked this questions elsewhere http://www.medhelp.org/posts/Eye-Care/Whit...ure/show/988636

wanted to clarify I also NEVER get the headaches with these things. but do get occassional floaters and stuff. The bizarre distortion of vision or temporary blindspots/trouble focusing, are "migraine auras" even if you never get the headache. Also my optometrist says they can happen randomly or after stress or emotional upset.

Dana Have you had a Visual Field Test? the effects your eyes have almost sound like a post eye surgery deal, only those problems are permanent. I had laser iridotomy surgery for Narrow Angles we tried to open up. They blew very tiny holes into my irises in an attempt to help my anterior chambers drain, and widen my angles to prevent closure, and help keep my eye pressures low. I had glare for a long time and still do at night, or on cloudy days. Some people get a white line glare or double vision. After surgery, I had black pepper spots over my left eye post surgery (the rt eye was a piece of cake a few days before!!) but they moved when I blinked. I realized they used extra goop on that eye (Put a glass over the eye to use the red laser, so my eye stayed open, the lubrication protects corneal abrasions during the procedure) Spots disappeared/lessened in 90 minutes. What you have sounds annoying but I want to make sure you've had detailed check up. I would be curious if they did a VFT or a Gonioscopy..the latter is usually done for Glaucoma patients (I've got VERY Narrow angles thus a glaucoma suspect for rare glaucoma, as opposed to Open angle) or to check for other problems. If they are all shrugging you off due to your age, demand somebody give your eyes a closer look. On the other hand the fact things fluctuate makes me wonder about the fluid in your eye. I hate when doctors dismiss things due to age. My nephew was in his late teens or early 20's and had a detached retina. He had surgery but has a tiny blind spot to this day. Good luck getting check out and ANSWERS to your situation. Sometimes an ASTUTE, caring optometrist can check/perform the tests I mentioned for you in a more caring manner. I've had a great opto for 0ver 10 years. Been an anchor after my surgery. P.S. Folks you do NOT need to QUOTE entire posts to answer. Just hit REPLY with the person's name you want to address. Duplicating posts is taxing on old tired eyes and not necessary.