Sophia3

My test for vertigo and other stuff were "NORMAL" but made me very ill for hours, especially the water flooded into the ears. got so sick after one ear they did not do the other and I had to lie in dark room until specialist could see me. I was told my brainstem over reacts to visual stimuli ( I knew this but it was confirmed) Before the specialist I was told to do brandt daroff exercises by my endocrinologist/ANS doc or somebody else...maybe this doc told me to do them as well. Made me sicker at first but helped in long run. Not sure about your situation since you have damage...but this retrains vestibular system. DO NOTE I induced dizziness and nausea with exercises but that went away and got better. Here is one link on BPPV http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

potsgirl I have prolific insomnia since 1990. Asleep anywhere from 1.30 to occassionally 5 am. If i could nap and rest at will, I would feel more rested. it's complicated. It seems to be more controlled when the sun shines for days as opposed to gloomy winters in midwest.

My fatigue is WORSE in the am when I wake up. I LITERALLY feel like I have the flu, hungover, achy (that could be my alpha delta sleep disorder that gives me little refreshing sleep on TOP of the ANS junk) I literally have to drag myself out of bed and a coffee pot 4 steps from my bed. Then I slow get with it to PUSH to get dressed and do anything. I get out for brief errands a few days a week. in the evening I am tired but often get a second wind. I have to recline all day or lie flat to get anything done, or do dinner stuff the rare times I cook IN steps, as I am sure you do as well. Just ONCE I would like to wake up refreshed instead of so bad, I feel I HONESTLY can't get out of the bed. Most frustrating and after 19 years it's getting worse but my ANS doc says he thinks I have variations on a theme of some slow motion version of Shy Drager Syndrome...don't reach the definitive criteria (THANK GOD) but it explains the downhill slide. Unlike the normal version where you meet criteria and go downhill ala Johnny Cash. do you feel your BEST when you wake up or do you wake up feeling horrible. I know we all have our windows of normal.

tearose, thinking of you and hoping your medical situation that put you in hospital, gets controlled soon so you can be home.

Ten years ago some places that specialized in this illness said they saw no women after menopause therefore concluded (WRONGLY) women got better. We now know many early articles of patient improvement were flawed. Many now know with women, the complexities of the ever fluctuating female hormones, and others, complicate this illness. Dr. Grubb said to expect big changes after menopause, probably worse going by history. This was in 2001. Now other older women are angry at being told things would improve when in fact 'some may' but many others do not. Thus making broad statements of cures, improvements is not a good thing. Best to just be honest and for doctors to say they do not know. Hope in how you cope with this after 10, or 19 years is different than hope you will "spontaneously" improve which can be insulting. Yet early in the dx of course one hopes for much improvement, especially when hit with sudden onset.

I am glad you got things cleared with Dan's nurse. Hang in there. Hope the meds help deal with the pain stuff.

elyag i know you have had physical setbacks and been way below your usual baseline. Add to that the societal pressure to go WATCH your husband play volleyball in the direct sun and heat, and stand or sit UPRIGHT is not a viable "option" for some of us. I hope you get through this as I know it's a drag to feel this way when we find ourselves in limbo. I don't think you are CHOOSING to be in self pity or stay home. You must stay home to avoid disaster in your situation. We are all different with our illnesses and times we can push ourselves. @Cathy in UK Excellent LINK! I have not read it in it's entirety but it is full of reality and a realistic view of living with a chronic illness. I also think the Pollyanna person and the Gloom and Doom are both most unhealthy. Thanks for the site...I book marked it to put on another site.

Ditto and amen to what tearose said. We ALL have our un momento, por favor times to deal with grief in steps, too, or on the roller coaster of emotions!

Mae GET the copy of the test. NOT the interpretation but the actual ttt that shows what your HR and bP was during the test. Get this in your paws and tell us here what it says...and then find a doc to PROPERLY INTERPRET. Sorry your doc was such a JERK. Many docs call it "negative" if a patient does not faint because they are dumb$$$ and clueless about ANS dysfunction. Stay strong and KNOW with a copy of the test, that will tell you a lot. Sorry again your doctor stomped on your patient rights...for the record, the Doogie Howser doc that was at my TTT said MINE was "INCONCLUSIVE" because I did not faint..even though my HR jumped 55 beats a minute in LESS than a minute. Dr. Grubb called it OBVIOUS POTS...as did my attending doctors call it autonomic dysfunction. Interpretation is EVERYTHING. GET that copy of your TTT ..the actual test. Good luck and keep us posted.

Just ask what THEIR PROTOCOL is for TTT. it varies from place to place. If you do not want the drug simply state that CLEARLY to all involved before the test. Many think it give's a false positive but others think it's necessary to see how your BP reacts to racing heart. My ttt did not have the injection nor did the group I saw EVER practice the med induced reaction. again depends on the doctor ordering it.. Please speak to technicians before the test and just tell them you are drug sensitive and FLATLY refuse it if you feel that strongly. You are the patient but have control to refuse drugs you do not want. Be assertive!! It's your body. Good luck and keep us posted.

never had a baby but congratulations !!

p.s. to follow on what Rachel said, i was told years ago by a head of an NDRF foundation it was an 80/20 rule. 80% of the folks got POTS SUDDENLY..and many can tell you the month, year or even the DATE they became ill. They can recover or have bouts of up and down, better than relapses. Or stayed well. For others, like me in the 20%, we realize we were always puny, even as kids, say in gym glass for stamina, could never blow up balloons w/o getting headache, SEVERE motion sick in car or on amusement park rides. So the 20% is less likely to recover. Virus onset has better chance for sure.

once my 1998 TTT proved tachycardia when upright..but normal to slight fluctuation in BP, it explained the "chronic fatigue I'd had since 1985" but in 90, I had to quit full time work. part time in 98. NEVER did anybody after my TTT pretend I would get better but said they would do their best to keep me comfortable and functional. With my lifelong history of what we NOW know is ANS issues, my drastic weightloss (after life as a fat person off and on my ENTIRE childhood and adulthood!) on top of the fatigue and other quirks, did NOT show signs of improving after 13 years. Dr. Grubb agreed, things would not get better especially after menopause. I appreciated the candor and honesty as opposed to false hopes. But you do have to re-arrange your thought process to cope, and that's no easy feat. I have not left my area except to see Dr. G since 1993. Can't fly or ride in a car very well, Would LOVE to "blink" myself to a vacation spot.

Yea, I am not a fan of the rush to market Vaccines to make money for companies. the Merck gardisil cervical cancer vaccine has killed 30 I think, and MANY SIDE effects on young girls...(that video can be seen on youtube if you haven't heard of it) That commercial from 1976 was a TRIP! sigh.

oh, honey..I am so sorry to hear of the loss of your dog. I have two cat companion animals that ARE my children. First, do not be so hard on yourself...mental stress can be worse than physical..and the loss of a pet is a HUGE impact on our emotional state and to our stress levels. I am sorry you can't be there with your boyfriend but remember, you were there for your dog when it COUNTED. When she was alive..and when she was feeling badly you took her to the vet. There is nothing I can say to make you "feel better" except to give in to the grief...lie down...get it out of your system (crying really sets off symptoms for most and standing up is darn near impossible when sobbing) Just be extra kind to yourself in the next few days...it will be hard but you will get through this...lost some cats of my own over 20 years. It's like losing ANY loved one, human or not in my humble opinion, as animals fill the gap of companionship for those living alone or without significant others. They greatly add to the QUALITY of one's life. and YOU helped your dog to maintain quality in her life...but it the end..it's always a heartbreak. Sending you cyber hugs and healing thoughts on your broken heart.

I am with Nina. I am not the least bit worried. Folks die from all flus all the time which is why the elderly and others CHOOSE to take vaccines. A vaccine rushed to market due to latest "media hype" is not good. REMEMBER the media's job is to try and make you live in fear. They are doing their job. I am even older than Nina but also remember the Swine flu and in 1976 there was a COMMERCIAL hyping the vaccine back then that was not a good idea. Look at how dramatic this commercial was ..remember we did not have cable news 24/7 on to scream the sky is falling so they made this commercial instead. we are all still here. http://www.youtube.com/watch?v=i3YCTnbRgm8 So indeed, take a deep breath, stay away from the media and do something you love..birdwatch, garden, watch a fun dvd movie or tv show...HGTV or something. oh and we have school closings all the time for illness when a certain percentage of the school calls in sick. Nothing new here in Ohio. Take a deep breath folks! It will be ok. Watch the squirrels or for the first hummingbird of the season.

Just wanted to say I am glad you got through this experience and hope the post op side effects fade quickly.

ditto to what carinara said! SMALL meals and learning the glycemic index of foods and watching your carb intake made ALL the difference in the world to me. Also digestive enzymes can help or fresh ginger tea before dinner or 100% ginger capsules taken before a meal. If I eat huge amounts of carbs, which I have not done in years i.e. pancakes, I feel HORRIBLE afterwards. I've always had reactive hypoglycemia. but add to that the splanchnic shunting and post prandial low BP...ugh...feel like a slug. become a grazer.Good luck.

i hate a mystery. Keep us posted, sweetie!

what about the left sided stuff?

POTS has nothing to do with fainting but some 'may faint' of course. you just need Min 30BPM HR increase when upright..some of us have 50 or 70 when upright increase. I feel horrible with PRE syncope issues as do many others and some doctors have written these patients are sicker as they are always on the edge of feeling faint. (visual black outs or tunnel vision, cognitive impairment, feeling disoriented) Aside from the obvious risks of REAL FAINTING and hitting the ground suddenly, some faint then recover and feel better. Thus I have read many fainters can keep jobs and still work. Their bodies crash and then rebound quickly. Although some of course faint and feel horrible for hours/days afterwards. No real neat box for ANY of us thus the complexities. It's the catecholamine and HR screaming that keeps us fatigued. Sadly some TTT are not INTERPRETED correctly unless a patient faints. I had the attending doc tell me my TTT was "inconclusive" and I needed to 'consider lifestyle changes'?? after being disabled 8 years. I left that TTT depressed and despondent since my ANS doc thought this would be "our answer" to my issue with gravity. It was days before I saw my "real cardiologist" as this idiot was not my doc but a young member of the cardio group. My doctor said I had obvious autonomic dysfunction as did my regular ANS doc. and when Dr. Grubb saw my TTT results said at first glance "obvious POTS" Hope you get some answers with your test.

sometimes, in some cases, bowel frequency or diarrhea can be nipped in the bud with a tums or Rolaids..one or two. a friend learned this tip from dr. Robertson at Vandy and it helped her. Helps me sometimes too. It's for days when we have too much adrenalin (don't we always??) churning out excess stomach acid. Somehow, eating just a couple of tums or something (I usually NEVER take that stuff as it kills digestive enzymes we NEED) can help me. Just a little tidbit. Use before eating a meal on empty stomach if you can but after a meal is ok, too. By slowing acid in stomach you can sometimes slow down the peristalsis movement with this tip. Maybe somebody else can try it to see if it helps.

That high carb stuff would not work for me, especially the breakfast! THAT would cause reactive hypoglycemia for me! Can't do pancakes or donuts either. Glad it works for you though.

Cat Lady!! We posted at the same time, lol. I hear you on Chicago's weather...I have the same thing in Ohio. It's the PITS!!

Somebody else from here mentioned they are MOVING to the Bay area...I would love to live in temperate climate but not HIGH above sea level. High altitudes no bueno for me. Got sick in Denver riding up a park mountain in '92. HORRIBLE mini case of High Altitude sickness. I think somebody with Cat in their name is moving to San Fran.