Sophia3

I got very motion sickness, and dizzy with those types of glasses. Years ago. I can not even do lined bi-focals. My brain needs more time to make differences for close up and far away but my situation is complicate. So I MUST wear glasses for far away and then for close up. Drag and expensive (pay out of pocket) But I get very ill easily from what my eyes see (Can't do tv shows with special effects like house, and have to be careful of camera movements in car races) Good luck but do NOT FEEL ODD as many can not do the progressive lens thing.

I have taken 10 mg but ONLY as needed...it kills my appetite and can add to my pre existing decades of insomnia, and some other side effects I could do without (makes hands and feet cold in winter and I have THAT issue already)..thus the tiny dose. You should know quite soon. This is the type of med given to singers with stage fright so it has to work right away. How much it helps with your HR depends on numerous other stuff. And what dose is correct FOR YOU. good luck

though I only take it as needed, there has never been a conflict with propranolol or my Klonopin...had scripts for both for YEARS...more than 10. Not a conflict for myself or many others. not sure of the doctors hesitations? but we are all different Why salt if you hve HIGH BP? very confusing. Hope you get clarification and SOON. you deserve it

Sorry to read about this sweetie. I know you know our JOB does not define the essence of WHO WE ARE. That is defined by our spirit and soul and who we are as HUMANS. Anybody that does not get that, get ye to a therapist. On the other hand, I am familiar with other challenges this puts on a household!!!!!!!!!!!!!!! Especially if one lives alone. I hope you can rest up and find a part time job maybe, down the road that you have a passion to to. For now, re=examine...rest, REST and MORE REST!! Take time for You! put yourself first...learn to be selfish in the healthy way and give what you need to YOURSELF. Then you can give to others, especially your kids a mom that is not stressed the minute she comes home at the end of the day. Be nice to yourself as you cope with the changes and grieve what needs to be dealt with. I am by no means minimizing the situation but know you have been hanging on by your fingernails for TOO LONG. Time to let go, tighten the budget and be there for YOU when you look in the mirror...and when the kids look you in the eye. I know that sweet husband of yours will help you once the shock of this wears off. I am thinking of you, sweet lady. Soph P.S. I also suggest 'Music therapy' whenever you can. ;-)

My response to exercise and thus answers vary dramatically! Thus many of my answers to the same question were the opposite. NO WHERE on the pole did it mention I can WEIGHT TRAIN but only LESS than 20 minutes and only lower body. after 2 years I can only now do two upper body (flies and rear deltoid machine) If I increase my weights and go over my line (NOT always easy to determine while on adrenalin rush to exercise) I get flu achy symptoms within 5 hours of exercise and like today, and feeling FM and joint pain. HOWEVER, I still try to exercise twice a week. to give IN to the fatigue (which I deal with daily) WILL worsen the O.I. On the other hand, it's IMPOSSIBLE to be upright some days to GO exercise. Constant balancing act. and I want to build up my bones a bit. so for me, as are most polls the CHOICES for answers are too general. And I do not fit neatly into a small box.

Research rules are different. Depending on exactly how records are kept, you could expose confidential information from a doctor, that is being done in a PRIVATE research. For example on illnesses or medications, or potential meds to bring to market. Different research has different rules but I have NONE from my sleep research of several months in the 90's. It was government based but my doctor made up the rules to fit his criteria. He was trying his best to educate the MEDIA and medical profession and pharmaceutical companies if things were successful. He was even on CBS Evening News. Still, not a peep in my general record files history speaks about this UNLESS I bring it up. I kind of like it that way because when you mentioned the drug to some people they flipped out and could not believe I was using it for a drug study. For a chance to IMPROVE my quality of life? Heck yes and the drug had years of safety under its belt when used properly in this country and others.

In the mid 90's, I was in a government study with a nearby sleep doctor and was NOT given my results and as poohbear stated, that was in the paperwork I signed before the research. I was told I was getting the real drug, not a placebo, and did a diary. Mine was self explanatory whether the med had life changing improvements as it had for a small group (it did not) Also the outcome did not compromise my health, thus nothing was released to my then doctor. I have been in many researches since then, NOT medically related, but skin care and i did not get a report on that either. Nor could I talk about it with others in the research or even family. Some huge companies take getting skin creams to market VERY SERIOUSLY!

WOW! I forget how your first visit went but so glad this one was GREAT!!!!!!! We NEED to hear more POSITIVE STORIES, don't we? I am glad you gave this doctor a second chance AND most importantly he VALIDATED your issues. thanks for sharing.

I've had tremors for over a decade...some days not there..others are..and will be there evenlying still..but focusing and being upright can worsen..but yea, it's an andrenalin thing in my case

i was in a sleep study a couple different times. One for MONTHs with once a month stays in the clinic and some wired up at my home. some nights I only slept 90 minutes, would not approach REM sleep, and would STILL NOT FALL ASLEEP on my own due to the hyperadrenergic aspect of POTS, the following day.m Just felt wired/tired. Other times I "could crash and nap". In my case it is not of choice of when to sleep. So we are all different and though "SLEEP SPECIALISTS" love to talk keeping a pattern is important, in the end they 'can be ignorant' if not aware of our dysautonomia. When I saw my sleep doc in the mid 90's that was PRE TTT and dysautonomia dx. We also know for those severely debilitated, lying in bed IS necessary or reclining with feet up...in between normal though SMALL household routines. For those that can just GET UP and stay standing up, more power to you. I have a few days like that but mostly I "listen to my body and push on the days I can". Info validated by my local doctor and by Grubb when i saw him in 2001. We exercise on our good days but do whatever it takes to survive. SLEEPING IS CRITICAL!. Don't worry about your pattern, just rest up for yourself. I am always up late and sleep late..have for 19 years. Living where the sun RARELY shines in winter does not help things to reset natural body rythms either. but to force yourself to go around with not enough sleep is the same as going around drunk. Your brain and reflexes are off (which complicates things when we have brain fog etc on our normal days, but I digress) P.S. other BUM info SLEEP docs give. NEVER watch tv to fall asleep, I find that's true if watching the news (yikes..I filter that and read it online) or intense dramas/or movies. I fall asleep EASIER with tv on with timer. I know many OTHERS Help by this as well as we don't get the racing thoughts to keep us awake. I just went thru 7 seasons of the Gilmore Girls on DVD s from the library the last few months. Gonna be tough going back to HGTV or something with commercials. COMMERCIALS can ambush you with bad stuff. So DVD's of funny or light shows can be FAB..and some medication to help you relax.

Not to be a buzzkill but oprah gets MILLIONS of letters and years ago we tried to get her to do a show on ANS stuff...nobody heard a peep. I remember YEARS ago before all shows (including Oprahs) and the night time "news" show became so celebrity oriented and exploitive, there were two good shows about ans stuff.. one on DATELINE and they either did most of the show or ALL the show with a lady eye doctor who layed her car seat flat at long red lights and carried a yoga mat with her to lie down when she could and IN between patients. NEVER did a follow up..>Shame. DATELINE also did a show on CFS one night..20/20 did a show about the CONTROVERSIAL chiari surgery "cure" but use Chronic Fatigue Syndrome (CFS) as "dysautonomia was not sexy enough" said a producer. Frankly I find dysautonomia a mUCH more interesting term than CFS myself. Now those night time shows have fallen off the radar or became about perverse topics (To catch a predator was Dateline's last claim to fame" Folks have many avenues to hear shows on topics on tv, online radio, or on terrestial radio but most either do not want to support them or only have on guests SELLING CURES at their website for FM, CFS or maybe ANS problems...sigh..if I hear one more JERK selling their cure all for big bucks for naught, I will scream SO good luck getting Oprah's attention...you might go to her website and try to get a huge thread going on her place to get attention...I have no idea as I never watch her anymore or go to her site...except on very rare occasions. there can be strength in numbers but to get Oprahs attention you better know somebody working for HARPO or get a HUGE petition

I have HORRIFIC insomnia, alpha-delta sleep disorder and if studied correctly recently, we would guess circadian disorders (my Am blood work for me is normal at 11 am or noon for example...my eye pressure is in the afternoon what most folks are in the morning, etc...My endocrinologist and ANS doc says my body acts like my noon is somebody else's 7 am. IF I MADE MYSELF get up 8 hours after going to bed, no matter what, I would not still be here. I have taken HOURS to fall asleep in sleep labs and with meds. I struggle to get an appetite. to stand up some days...easier than others (90% of waking hours reclining in between normal tasks except for my GOOD days which may extend that a couple hours but in segments) Only shower once a week..it's a challenge to leave the house for more than an hour if i can NOT LIE DOWN where I am going. So sorry, your sleep doctor does NOT GET ANS issues as I "Stay sleep deprived"...so to each his own but I sleep no matter what...this time change has been a &^%$# but I wake up at noon now..but I am too achy with FM without sleep. The end. Further sleep deprivation fixes nothing and "specialists" do not always know everything nor no what it's like to live in OUR bodies. just my two pennies

jenwic I don't have money for beauty shops but could not tolerate them if I did. So many started doing fake nails with HORRIBLE GLUE SMELL i could NOT tolerate being in salons 20 years ago..let alone now. Also the bleach is not bad for me to mix up..but the dark hair color I use to mix with activator to add low lights, stinks MORE than the powdered bleach. Then I use a no ammonia or non peroxide toner as needed...I have to step out of the bathroom to mix up the darker colors and then it disappates. sp? Good luck.

I bleach my hair using a cap or foil pieces so the color does not DIRECTLY touch my scalp. Is it possible for you do go this route? Its exhausting having your arms over your head but if somebody can help you, maybe you can at least add enough color to add depth and body to your hair. If I did not bleach my baby fine hair or perm it, it has nobody and the older I have gotten the color is duller...which is normal for women. Direct color applications to the scalp have many side effects...so think about doing a cap...I do mine in stages as it is easier. I get my stuff from Sally's Beauty supply stores.

agree. benzos get a horrible rap. take them if they help your quality of life. SSRI's are very addicting to one's brain chemistry and or body. Though it's not PC to say that. SSRI's need to be weaned off SLOWLY if on for any amount of time. Any internet search about these popular drugs, thrown to the masses on tv commercials, will confirm this fact. That's all I will say on this subject as all I know is if klonopin, xanax, valium, or ativan HELP YOU, find a doctor that will give you a reasonable amount to keep on hand.

ok I have heard of really low BP Ernie but ZERO???? Was that a typo? :-) How can both numbers be ZERO? I thought zero meant you were dead? Even under general anethesia and post op, bp is not that low??? My sister is healthy but had dangerously low following surgeries years ago but never anything over zero..so I am confused by that comment. anyway, my BP and HR are all over...Standing spikes in BP can be from hyperandrenergic POTS...we often have a baroflex response that can kick up BP...I have caught my bottom number over 100. THEN I lie down and within two minutes, it drops. Same with HR. There seem to be variables with all of us. But yes many hormones can confuse ANS stuff and cause their own plethora of symptoms. Its a drag but I hope you get some answers to make you feel better. Just when we get something figured out, we get new symptoms and do not always know the trigger.

Salt in Gatorade or canned soups is dissolved in part of the processing. If you add salt to water to drink, it can make you sick. Also salt tablets or TOO much salt shaker food. Yes salt can AGGRAVATE our insides, just like salt used on roads for snow eats metal on cars. be careful with salt and make sure it's in cooked foods...yes with Celiac you might have more sensitive stomach. I know since using salt tabs YEARS ago, to this day, I can no longer eat spicy foods. It makes my insides hurt. I stilll use salt ok shaken on food but would never drink salt water...it can be used as an emetic IIRC (If I recall correctly) Good luck

yes have tremor..some days more than others. My ANS endocrinologist noticed it kicking up big time yesterday when I saw him..we are sure mine is from the adrenalin surges. had them for years

have you been told you have wilson's disease? high copper in body http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/#what

Glad you got through the test okay!! I had to drink in the AM for my test (when I feel my worst and thought I might be sick from drinking so much) I even called a tech to see if I threw up could i get the test and they said yes..and to just drink as much as possible...so I finished it in the car in the parking lot before going IN to the hospital. Also I might be weird but I LOVED the hot sensations I got from the injection. That's all I'm saying.

I have drunk the contrast solution as well, and am med sensitive. It was no issue for me. To add to what Nina said, YES very common to have symptoms for BM's or even emptying a bladder. There is even a term for folks who faint doing either of these. "Defecation syncope" and the other "Micturition syncope" So relax (I know, easy for me to say) and I hope you get answers from your contrast. Oh, and a small footstool to put your feet on when sitting on the toilet can help. or some object that is about 10 inches tall to support your feet....it's helped me a time or two when needed. I don't faint but have gotten terrible HR and dizziness.

when I saw Dr. Grubb in 2001, he got called out of the room alot during my visit..good docs are busy. Sorry you have to make another trip for testing. drag if you live HOURS away. After some recent post about standing and sitting TTT, i am getting more impressed with CC. Though my own doc thought I shouldve done that rather than vanderbilt (did NOT want to be gone from home, my two cats for days so would not go to Vandy either) Grubb was good doc but useless to somebody who had been sick as long as I had though he and i were on the same page with how I had fought this stuff for years. But I wanted more testing so my local doc ended up ordering more things and only one that Grubb suggested..so ya never know. Good luck with your tests and you will be FINE..maybe sick at the end of the day but the one day of suffering will be worth it to GET ANSWERS!

yes, bb's are NOTORIOUS for messing up people's ability to sleep. If melatonin helps, then wonderful. but it can be more complicated than that, tho yes, bb can mess up the body's natural melatonin. But so can MANY illnesses. If you just need a shorter acting BB as needed as opposed to one a day 24 hour dose (that most docs give out of HABIT AND LAZINESS) Ask your doc if you can try taking propranalol (or another short acting substitute) early in the day. TOPROL XL was a nightmare for me that my cardiologist never understood for a second but my ANS doc did and the latter changed me to propranolol...baby dose. just my two cents worth.

Nothing helps and I second what Rachel and Poohbear said. For most of us diet will not help (except salting and fluids IF ITS a hydration/low blood volume deal) because it's a GRAVITY circulation issue..the longer I am up the fuzzier my brain..and somedays I can push and other times can not remember my address or phone number. MADDENING. You know it's a bad gravity day when lying flat, your I.Q. is equal to a pair of shoes P.S. But eating too many carbs in one sitting can make it worse...but we all know that by now or SHOULD. Also if you are stupid enough to eat raw choc chip cookie dough with UNsweetened coconut added and THEN eat too many baked cookies, your brain fog worse. And you deserve to feel LOUSY. I tested this theory a couple hours ago.worsens your mood, too..even lying flat!!

Gayle Is the BP high when standing or even reclining? Reason I ask is some of us have quirky baroflex response when first standing as opposed to dropping BP..especially with POTS as BP can be all over the place...last year I started catching High BP when standing...150/110 and I would get lightheaded..but when I would lie down it would quickly drop. Thus my question. WHEN your BP spikes does lying supine slow it down at all?