Sophia3

Well I have tried many things/therapies/nutrition/ blah, blah, blah. after ANS progression, I am still waiting for spontaneous cure after 19 years. It's HIGHLY UNLIKELY unless you are a kid or had SUDDEN onset version or MEDICINE induced type that's temporary. There is no simple prognosis. Some could use the viewing of the NDRF Conference tapes for ANS docs video explanations. HORRIBLE EDITING on those videos but information great and validating.

I am glad sitting in a wheelchair made such a positive difference for you. Glad you had a great day and really got out.

Actually CFS IS a major ANS issue in many. The CFIDS Chronicle confused me in the early years saying CFS TTT showed NMH (Neurally mediated hypotension!) Never mentioned POTS or OI for years. SO yes many CFS pts have ANS issues but many do NOT. Many with ANS do not have CFS. Confused yet? My doc has always used the term "Autonomic dysfunction" which covers them all. Only dr. Grubb called what I had "Obvious POTS" due to HR jumping 55 bpm first minute on TTT but my BP did not drop...my BP is often low Supine and in mornings..the low bp in mornings very common in those with "autonomic dysfunction" p.s. My old CFS EXPERT doc never addressed the tachycardia. It was an internal med doc that had a major concern with that back in 1990. Had me wear a 24 monitor. He flipped out at my HR when exercising but just shrugged it off. If ONLY back then a TTT was more available..instead of waiting until 1998...but I've had mild ANS junk my whole life so wouldn't have mattered really

Tearose Mega Dittoes to your post!! Firewoman I SO understand your situation...i've had mine since birth after being a 'sickly child, no energy, bad hypoglycemia, exaggerated motion sickness, poor stamina in gym class, etc...if we only knew then..

I have adapted for SO many years of this would you believe it's hard to answer this. You have gotten great answers. I bird watch and squirrel and chipmunk watch...in warmer months watch flowers grow. DVD's from library for me are HUGE. I watched all 7 seasons of Gilmore Girls (GREAT SHOW by the way...i was never even aware of it when it was ON...not much for modern tv junk but it was delightful! Great show to fall asleep to. Even my room mate a guy watched it a few episodes behind me and got hooked. Great character driven show. I photo edit a little bit. Listen to music sometimes...local talk radio. shows on BLOG TALK RADIO...(Use Firefox and ADBLOCKER for that site) HGTV at night. I distract so much. My room mate got a new laptop with a webcam and I have made a couple of eyejot videos to send in email. It's free to sign up and send 60 second emails. So cool! Just have decent lighting..built in webcams aren't as good as the $100 ones but works to send fun stuff or sing Happy Birthday to people. You learn to get creative. Earthmother I love your tips for cooking!! I mix stuff up in batches or mix dry ingredients hours before making cookies or cakes...so i just add wet ingredients, mix and put in pan. I don't have the stamina to cook much but with "think ahead thinking" it's at least do able on those decent UPRIGHT moments days.

I just wanted to wish you well in recovering this. Your eustachian tube comment flipped me out. I had a bad day Easter Sunday and could not even ride with sister to 88 year old mom's house. Felt too OFF dizzy and ears plugged! (they just watched Master's Golf tournament and I did the same thing too, but I digress) I have also had at about 2pm "surges" like I just took a sudafed or got a jolt of caffeine? My morning two mugs of coffee never do that. HOWEVER, mine seem to be hormonal...hyst so no period to give major clues...but ovaries, case of the weepies last week, food cravings (Good for me, never hungry) sore breasts...now past couple of days, not much appetite but falling asleep in the evenings for 2-3 hours (VERY unusual for me!!) Sometimes you read about other folks and you'd think we were all in the same area and something was 'in the water'. Good luck with the collection. speaking of hydration I have gone thru chapstick like crazy lately!!

In my case it's not anxiety that gives me full bladder ANS symptoms. Dr. Grubb edited a book YEARS ago that mentions defecation syncope and maybe micturition syncope (fainting upon urination) Many do not faint but get VERY symptomatic if we can't go to the bathroom when we have the urge. This has been discussed before but I don't have any bookmarks on it. but anything that is autonomically connected (as so much of the body is) can cause O.I. symptoms...bright lights, darkness, loud noise...stretching of rectum of bladder. In the NDRF Conference tapes, Dr. Grubb even mentions this (the stretching of the rectum causing symptoms as it fills with waste)

Ditto's to Poohbear and Ramak! It's ALL EXTRAPOLATION the so called causes unless the ANS experts are idiots and I do not believe they are. Might have different approaches to treatment or theory..but like small rivers, they all are aiming to the same Ocean. They are all doing what is in their power to study, treat and research. Some clinics getting new doctors to study patients. It's no money making machine to treat ANS patients and the doctors that do are over worked but I appreciate ALL of them!!!!!!!!!!!! p.s. and not everybody here believes in the Lyme connection. just an FYI.

Yay! Glad it turned out to be enlightened doctors. But sorry about the hot stuffy rooms. My biggest trigger...heat...next to noise, next too no sleep, next to..well, never mind. Can't wait to hear updates on your tests

Am 52. Dx with insomnia/tachycardia CFS in 1990 after PREVIOUS CFS dx in 1985 that I controlled with lots of sleep and odd houred jobs. Immunologist claimed I had "chronic adult mono" but we now know mono has nothing to do with this. I have Orthostatic tachycardia and huge fatigue issues. My low BP shows up supine or in morning. I had to quit working full time in 1990 and even part time in 1998. but this form of Autonomic dysfunction I have has progressed but been in reclining position during 85-90% of waking hours for years. Struggle to keep an appetite and eat as much as I should. In retrospect and examining history, I have had MILD ANS issues since a little kid. So was born with my version..tachycardia did not show up until 1990..or was not brought to my attention until then.

Nina don't come to this chit chat board much but saw your post. Still sending thoughts and prayers to your father and you..and the medical team.

"Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research." WOW. No offense but the fact this "sleep expert" said these words shows what a POOR UNINFORMED doctor he is. It has been talked about in CFIDS journals and sleep journals for YEARS the lack of restorative sleep and or alpha-delta intrusion issue. Also with FM. Sorry he was a dead end. Mercy. I was told back in the mid 90''s of the sleep problems with CFS AND FM. I did not yet have my dx of Autonomic dysfunction back then. But at least my sleep doctor had a clue.

WOW! 72 hours. Good luck on this. Dream of burgers and fries! Will look for an update.

This whole left side pain thing STINKS and I hate hearing this. I can not wait for you to get some CC answers. Wish words could do more for you, sweetie. Can you tolerate ANYTHING for pain, though I know nothing helps nerve pain much. Geez.

Aside from epilepsy issues, low glycemic eating is low glycemic but it's COMPLICATED. The food mixing or combining can affect a 'meals glycemic index' or even cooking methods will also. i.e. cooking pasta to al dente (soft but firm) is slower to raise blood sugar than over cooked mushy pasta. Mashed potatoes will raise blood sugar QUICKER than boiled. So there are many nuances to the Low Glycemic index. But I feel TERRIFIC after cakes and cookies or ice cream provided it is portion controlled. I don't eat a pint of ice cream or 10 cookies in one sitting...or raw cookie dough (ok try not to eat much raw choc chip cookie dough.) .

Yea, the week getting there will be a challenge. But the CLIMATE of San Fran I hear is divine.

Well as you know some beta blockers can provoke asthma so somebody here can help you with that hopefully. from a cat mommy: Make sure you have a cat carrier that you can put a backseat belt around..good sturdy one. A bowl for water and a portable litter box for the car. (They do make such things) Also I would try a type of BBlocker that you need to take multiple times a day. THAT WAY if it should cause bronchial problems it will wear off in 6 hrs as opposed to the once a day BB. Even folks who don't have asthma often develop a cough on beta blockers. It happened to a friend of mine last year who could not shake a nagging cough. First thing I asked was "has your doc put you on a beta blocker lately?" sure enough, so he switched. Never had asthma in his life. Best to you with your move. and getting specifics on BB to take.

Avoiding "simple carbs" does not do SQUAT for me. However learning about the glycemic index of foods helped me more than anything. I need to eat pure protein (preferably lean beef for the carnitine and other properties) or chicken or sometimes fish. And watch how much I eat in one sitting of any food, period. What I NEED TO AVOID is the "fat free junk food" rubbish. I need fat to SLOW rise in my bodie's blood sugar so I don't have reactive hypoglycemia. Some of the SICKEST I ever felt in my life was when I tried FAT FREE soft yogurt (Remember that craze 20 years ago??) I am better off eating real ice cream. So are diabetics as fat free sugar junk can jack up your blood sugar. I NEED to eat junk food to keep my weight up, too. It's either eat junk food or drink Ensure which is ALL SUGAR and way overpriced. So I make my own cookies or cakes which is concentrated forms of 'simple sugars' but the eggs/fats and or dairy products help it all work for me. Or buy treats to keep in the house. If I try to avoid simple sugars or candy or other sweets, I can lose 10 lbs in 2 week!! I eat small amounts of food period.Try eating HIGH VOLUME Of healthy food with gastroparesis. I can't stomach salads except in tiny amounts...or veggies. Thus I need high calorie foods in tiny packages. So my endocrinologist aka ANS doc said WHATEVER I need to keep up my energy. And my triglycerides are 57 (fifty something) and my Cholesterol is like 145. So I don't do any of the health nut/purist/avoid 'things white' diet as I do not want to get below a 100lbs. Years ago I bought a CFS Diet book to help with Chronic Fatigue. HA, I felt horrible on it...I think it had 'no salt' in it..this was 15 or so years ago..and we know now we need EXTRA salt. But whatever works for individuals. We need to find our own thing but don't let others push their health agenda on you. Do what makes YOU feel better in the long run.

Just saw this thread. Sending thoughts and prayers to you and your entire family, Nina..and the medical team.

WOW! Fantabulous news and FREEDOM for you. glad to hear it is helping with your quality of life. I would need one that fully reclined But we live on a hill anyway so wouldn't help around this subdivision. But it's so NICE to read this has made such a HUGE difference for you. You go girl!

I'm waiting for an affordable monitor that when it reads low BP/narrow BP/Tachycardia too high, it INFLATES from the waist down with some attachable air pressure pants, for dealing with gravity issues! I don't think that's happening anytime soon but the pants ARE available for research. I know one person that felt normal wearing those for the first time EVER. Can't remember if that was at Vandy or what. But that was 10 years ago. And they might be affordable current for Bill Gates $$$ but not us normal folks. So at my age amd 19 years of this, you tend to be more impatient.

Though I can't work out much but can last 15 minutes on lower body weights, I MUST confess Hostess Ding Dongs or King Dongs used to get me through a workout some years back. I need the calories but had to eat it about 15 minutes before workout. Also a Snickers bar works even better due to lower on the glycemic index. Just saying for those that need calories, you might find your magic bar...Balance Bar, Candy bar, Hostess Twinkies. We are all different! Off to do my workout after a handful of peanut M&M's

read the article and saw the pic. I know it's tiny..but for those bedbound or semi bound, not much help TODAY and I tend to live in the moment. On the other hand, Earthmother you make a valid point, too. What will this do for us? No plan of fixing issues we know we have. AND some of us feel horrible and the BP reading of the moment will not match the symptoms. It's the FLUCTUATION of things and the different spilling of chemicals (Catecholamines) into our system with adrenalin surges that is the problem. AND Gravity. I also like a gizmo as much as the next person but what can it do to change my life. But agree, these things can be validating. But so can supine, sitting and standing BP and HR for those of us with florid POTS.

ok, if you tried tilting the bed before and it did not help, do yourself a favor and skip it this time. NOT TO SPEAK FOR THE EXPERTS but more than a few of us have tried the head tilt thing 8 or ten years ago...and it made many feel worse!! Again, it's outdated material and more likely to help Shy Drager Syndromer. Personally after talking with others, and my experience, I would NEVER raise the head of the bed again, even with a court order. Now back in 98 my cardiologist that did my TTT that confirm Autonomic dysfunction (Did not use POTS term) said he had read of articles of raising FEET of the bed. Another guy that had a site on POTS told me he used to have a link on that but lost it. Apparently finding details on raising the feet of the bed is no easy feat. Also it's a subtle raising. As a rule most healthy folks should never raise feet above head while sleeping which leads me to believe it's considered a controversial suggestion?? Don't know...got exhausted looking for the topic years ago. (Raising feet as opposed to raising head)

Ok You might have wanted to add in your title this is FIVE years away from commercial use and not even in clinical trials yet. I know a woman who's son wore a BP device 10 years ago for a couple of days. The kind that self inflates every 15 minutes. How the HECK would you SLEEP with such a contraption? I can't sleep unless it's quiet and getting to sleep is a trick. But again it's 5 years down the road.