Sophia3

Rachelle I don't notice that from carbs. But I seem to do fine on meat, too. We are probably all so different with our bodies ph, and chemistry. Different things set off different, er, "reactions". I only know if I try to eat beans today, i feel rotten, get abdominal paints, and must not sit to close to a smoke alarm!!!! That's ALL I am saying about this!!??

Melissa! Hope you will get better soon, and out of that place. I hope it wasn't a reaction to the iron infusion you told me about.... Positive thoughts and prayers, Sophia

Lisa How frightening for you. I hope your doc can get you some information but I would still see an eye doctor. maybe a neuro opthamologist? Since you wallpapered, does the smell of the chemicals in the wallpaper bother you? Do you spend a lot of time in that room? Years ago I went in a wall paper store to look for a border and had to leave within 3 minutes due to the chemical smell. I hope you get some answers/help SOON. Sophia

I remember when Tom Snyder had a talk show (not the one in the 70's called the Tomorrow show, but the LATE, LATE show after Letterman in the 90's) I think he was interviewing the comedian/director David Steinberg and Le Petomane's name came up. Tom could hardly speak, for laughing, as they gently talked about this man's feats! When they said he ended a show by emtying a bathtub full of water, I couldn't imagine!!! Later, I got a computer and the Internet and that was one of the things I researched. It's hysterical reading and if you are from a proper family, raised on semi-Victorian values, it's unreal to think somebody MADE A LIVING wit this 'talent'!!?? Glad you guys got a good laugh out of it. Laugh theray IS A MUCH NEEDED thing with this illness, isn't it?

Stacie I went thru that horrible Caloric testing a few months ago. I got very ill from the cold water in each ear. The girl asked if I wanted to continue and I rested a bit and said yes. THEN they did the warm water that "felt hot" as I was warned but I felt like my brain would spin off. The nausea/vertigo was so horrible they stopped it at that point. I wish the docs had to go thru that test. all these tests and I was "normal" though had a "violent REACTION" to the caloric test???? I had slight hearing loss, normal for folks my age. but I was williing to go thru ANYTHING to get some answers....so I am glad I did it. I was told they do not do it on pts over 65 because it is so hard and draining. Well, i was worn out FOR DAYS from it but had been warned about it before hand by a friend with Meniere's. When I have the vertigo/dizzieness/or blacking out or graying of vision, I had to stay in bed. Otherwise I 'push to do things' which may just include making myself stand to brush and floss teeth!! and do one load of laundry to cleaning the house. I just have learned to "listen to my body" and learn when I can push. I take many breaks to get thru cleaning or light gardening in the summer. Lying down with FEET over head helps to push my stamina to get things done. HOWEVER if one has dizzieness/vertigo etc, you really CAN NOT function...when the house feels like it's moving or slanted, pushing is impossible..and I can't do motion sickness meds. I just trigger mild vertigo bending over the sink to wash my hair just now. I also just took half a does of the red Sudafed and a xanax. It will help with house cleaning i need to do! Xanax helps the tachy cardio trigger of the Sudafed. I hope you learn how to cope with the dizzieness Stacy...the low BP or the low cerebral flow to the brain with NORMAL BP can wreac havoc on what our "brainstem interprets and reacts" so the neuro ENT told me. I do do cawthorne exercises when things flare up...I need to do those later today..I need to drive in a bit after the medicine kicks in.

Before I "Knew" what OI was, I would gripe to my former "CFS SPECIALIST" that I feel better when I lie down or am reclined. I even flat out asked for a tilt after that study from Johns Hopkins made the FRONT page of the CFIDS Chronicle and he refused. after that I went doctor hunting via letter writing. Also, I have described my brain fog (an issue since I applied for disabibity way back when) as feeling like I just woke up from General anesthesia. My sleep doc used to say that is because my perpetual alpha-delta sleep disorder perpetaully deprives me of sleep. All I know is this all has been a long journey,. When I quit my 9-5 job, I HONESTLY thought the nutrition, Norman Cousins laugh therapy and sleep and rest would fix me for a return to work in 6 months Oh, well, you just have to adapt and change outlook and relize our jobs are not the essence of WHO or WHAT we are. Though some people have a real problem with that ...and for men I suspect it's worse. Just my two cents.

EXCELLENT Article, Be still! I stll am sorry the late great Dr. Streeten died...he came OUT of retirement due to the studies of Bell and CFs. I used to have more articles than I do now on this subject. Dr. streeten had seen this for years and called it Dysautonomia. Thanks for posting this. Great stuff. Oh and brain fog has been an issue my WHOLE LIFE and we blamed it on low blood sugar. In school I would do worse on tests than I expected and was a horrible typist..The Brain fog has SO WORSENED with female hormone issues it is up there with the crushing fatigue somedays~!! If you have any links to this, please list or PM. I used to be on this mailing list of Dr. bells and wondered what happened...been several years. p.s. in the earlier years of this junk I got the CFIDS CHRONICLE and LOVE that periodical. It save my SANITY AND LIFE in 1990 with an article about 'sleeping pills not working' but Klonopin and antidepressants did!! It also MIRACULOUSLY wiped out major allergy problems instantly. I had gotten allergy shots and the Klonopin and I forget the original anti depressant eliminated the allergies!! for GOOD! after 2 years, allergy shots were NOT helping...

Be Still I never had such an issue with back door breezes until the last few years! Hormones in women can UNDO ANY FOOD Combo trick I have sadly found. Low estrogen or variable surges of the other hormones cause so much havoc, MANY women are dx with IBS during this time. Before this, I an MANY others could eat what we want with no GI upset. I had to give up beans years ago and I lived on the cheap diet they can create!!! What's the saying "You can't fool Mother NAture" and the hormonal changes make many women windy! I just hope I never get the nikname Foghorn...though my cats will never tell and I hide this problem the best I can.

Yea, I was tested for celiac and even went on the diet for a couple months...but at first I thought it helped and then realized it did not. also some supplements cause gas!! CoQ10, for ENERGY and 5_HTP for sleep issues are just two examples. Oh, and calcium carbonate BIG TIME..and for me the citrate does as well. I sometimes scare my cats with the noise issue. My young partially autistic black and white cat Oscar is sensitive to noise. He can be asleep 20 feet away and if you open a pop can or unwrap a noisey candy wrapper--ZOOM! He is gone. I have awakened the boy out of a sound sleep on the bed! LOL. Dang, we can't win!! I need to ask my radio buddy about the 'noise deadening thing'. He called today in fact and had I read this post earlier, I am sure he would've had a field day talking about it on the air. They usually stay away from bathroom humor but it does come up in the news or with off beat phone guests!! hence the filter deal. He is an older guy in his 60's and usually has a tactful but hilarious way to bring up such issues. Have you tried some sound insulation in your undies like they use in music studios!! Course, it may look kinda obvious! Theresa It could be worse! That Le Petomane dude from France could've been a relative!!!!!!!!! "Uh, what does YOUR father do for a living?" He toots around Europe!! ROFL!

Just to muddy the waters!! There is a subset of CFS pts that have dysautonomia There is a subset of dysautonomia pts that have fatigue or CFS. Fatigue means you are super tired thru the work day but can function and work. CFS as a rule means more DEBILITATING, disabling fatigue but there ARE VARIATIONS on a theme...same with ANS problems. I was dx by an immunologist back in early 1980's..long before CFS got it's name. I was teaching aerobics and feelingn like **** and going home to sleep 14-16 hours. back then I was told I had Chronic Adult Mono. I could work but had to 'work around the illness'...work odd hours, get LOTS of sleep and diet controlled it too. Then all heck broke lose in late 80's and my will power, and ability to cope with a life time of stamina issues and motion sickness!! and fatigue, just seemed to "take over my body". My affirmations,vitamins, diet, and laugh therapy and sleeping long hours, no longer "kept me going" socially and then workability. (ALWAYS got sick in the car and AMUSEMENT parks were not amusing but horrifying to me so never went more than 2 times..I am more dizzy and nauseated now than ever..keeping weight on is an issue. I was a FORMER FATTY/thin person before the ANS hit on top of the CFS. I had 4 sizes of clothing in my closet. Three sizes i vascillated between and the 'skinny' clothes I dreamed about. Now the skinny clothes fit but are 20-25 years old!) The pain of all this (no pun intended) is that Dysautonomia is "not a disease" per se, but a cluster of symptoms brought on suddenly or that we are born with. There are different underlying causes in EACH of us. Genetic, viral, chemical, etc. And after a lifetime of being "a wimp" and progressively getting worse (though perimenopause can kill your will power and MAGNIFY your fatigue) Grubb told me it will worsen things and sometimes the doctors just can' "fix us" but try to keep us 'comfortable' at home. So POTS = fatigue in most pts..from annoying to very bothersome, to disabling symptoms. CFS+ is the same way. Are they connected? only if you have orthostatic issues with your CFS. Many with CFS do just FINE standing still as cashiers or working on their feet all day. but may nap or crash for sleep when they get in the front door at home. CFS CAN be POTS. CFS can have nothing to do with POTS. POTS folks can have energy to work, play, travel, and whatever with meds and rest. Others, no matter what meds and rest and fluids, can barely get out of their jammies and brush and floss their teeth! I was one that diet and sleep controlled my fatigue for years. YEARS. Then after a tubal ligation, the INSOMNIA started randomly and to this day is CHRONIC. Years of sleep deprivation + documented unrefreshing sleep=CFS and in more recent years, FM for me. Many of you who have horrible fatigue issues probably have quality sleep problems. To goober that up, many think ANS problems cause a multitude of sleep problems. SO it's the proverbial which came first, the chicken or the egg. Or the Abbott and Costello routine of "who's on first, what's on second, I dunno is on third base" ??!! So the more we learn how the body works, and the different overlapping illnesses, the more confused we can get. I hope this post helps more than it confounds.

It is great for helping reset circadium rhythms...I took it for years until I saw an endo and my prolactin levels were increased....I stopped the melatonin (I was taking 3 mg) and the levels went down. course with this llness, it could've been a coincidence. However, melatonin HAS been shown to raise prolactin levels. I sometimes take part of a tab to help with sleep...matter of fact, I have been awake until 4 am for week so will try some tonight. it can cause vivid dreams but I have those anyway. It's best to take a couple hours before you want to sleep if it doesn't help right away. I used to have an article that told when to take it in the summer versus the winter. I also let it dissolve under my tongue though it stays grainy and I have to spit it out after 30 minutes...but THAT can get it into your system quicker. I think 1mg doses are safter. Dr. Weil mentions also about the long term affects it has since it is a hormone. So you just need to read, risk the pros and cons and make your own decisions. It certainly is helpful for short term use...or intermittent use. I would try it but enlighten yourself. and check the sources you read (don't read the sites that sell it! LOL) good luck

So GOOD to hear a good new doctor story! CFS was my FIRST dx 20 years ago..here are a few sites to get you started. http://www.ncchem.com/cfids_new.htm http://www.anapsid.org/cnd/diagnosis/oi.html http://www.cfids.org/ http://www.ncf-net.org/forum/orthostatic98.htm

Sorry Morgan. I don't know if it is lowering your BP and creating tachy or just the complex system not liking the new med. I wish there was an easy answer to this stuff but there is not. Hope it wears off or starts to help soon. !?!?

Didn't they have you lie flat and quiet for a long time before you were upright? That way, your HR may start out lower. Then when they tilted me (in my case) my HR rose 55 beats in about 45 seconds...less than a minute it jumped. Then stayed there and up and down a bit. My BP changed but never plunged. BUt I WAS SYMPTOMATIC and ill, hot, nauseated, sweatym I rarely sweat now, I felt stressed. The idiot attending doc said it was INCONCLUSIVE ...I needed a coke to recover and then my friend drove me home. I was despondent and depessed by the cavalier attitude of the doc. THEN I saw my then REAL CARDIO who said the tests confirmed my endocrinologists suspcions of Autonomic dysfunction...aka POTS. So INTERPRETATION of the test is everything. Nobody called mine POTs though I knew it was, until I saw Grubb. He said w/o question POTS. So I am sorry you had a bad time and no real answers. NOBODY should EVER be in the room except the techs..the lights should be dim and no music...my techs and doc chatted softly...when I tried to talk to complain, they told me not to talk as it AFFECTS the test results. Anyway, get a COPY of the test and see for yourself what it says! Get the entire printout..it is easy to read. Good luck.

Found this picture of you Morgan Sorry, couldn't resist..I took this 4 years ago. hazy evening. Stupid photo was too big..I resized it...photobucket is not reliable....

I never burp and tend to have hmichel's problem. I think I am related to Le Petomain!! http://www.ljhelms.com/pet/_pujol/thestory/retro.htm If you thought the French loved Jerry lewis, read up on this guy!!!?? I thought this was a joke until I read about it years ago.

Jan I only SEARCHEd about the filter safter a buddy of mine had the inventor on his radio show. The laughs and questions they thought of for this guest were a scream!! And apparently there is special underwear for this problem with other filters. Yep, if it's out there on the net, I can find it, LOL!! I am the search queen.

eating meat doesn't cause gas....many vegetables and beans do, bubbly drinks. Best bet..digestive enzymes, especially if you are older to help things get digested better. As we age we are lower on hydrochloric acid. Nd activated Charcoal tablets for the actual gas...helps absorb odor and cramping. They also make special things to put in underwear for this problem. I KID YOU NOT!! I heard it on a local talk show a radio buddy has...I laughed the entire time but it IS a real problem for many of us!! Here is a link for the undie filters! http://www.flat-d.com/flatdreusable.html

Also, remember, is is Soc Sec job to make thise such a HASSLE that folks just give up. WHen ill, it is ExHAUSTING to be your own advocate. Thanks to the Internet and Telephone, it is getting MUCH easier to find out things on your own. So hang in there, and yes, don't believe a thing the idiots on the phone tell you....The right hand doesn't know what the left hand is doing. Just 'be nice to them but NEVER give information on the phone'..ONLY in writing and now thay you have been turned down, seek a QUALITY attorney. If you could put together the convoluted work needed to get your soc sec on appeal, you wouldn't be disabled!!! Especially in the eys of many judges!!! Keep us posted. P.S. That disinissues will also help you learn to WORD THINGS properly on your paperwork.

Belinda Hope you are starting to feel better by this time. Good grief.

Hi I am not sure where it is on this site but I HIGHLY recommend you look online for a private email list calle Disinissues It is STRICTLY a disability information site about getting, fighting appeals and maintaining disability. Whether thru employer or Soc Sec. EDIT here is the site, I have it bookmarked!! http://groups.yahoo.com/group/Disinissues/ Please sign up ASAP and explain your situation. They have over 2000 members and EXCELLENT legal tips!! Best of luck to you and sorry about your situation. I went on diability in 1990 and am now 49. You need documentation to explain your limits in a clear manner. do not give up. Take care Sophia

Hi Stacey I went thru lots of testing and had violent reactions to the caloric testing (flushing water in your ears!!) but was determined to have problems with blood flow to brainstem, as many of us with this illness do have. But I can related. I did some exercises the doc gave me (forget the name) but there is also the Brandt-Daroff exercises. I had them bookmarked elsewhere but can't access them right now!! Does your dizzieness get worse on your period...that time could trigger full blow vertigo for me (Feel like I am walking on a sharp diagonal floor!!)

Some folks have MVP and feel fine and even go thru life w/o knowing they have it. Others have it and also have ANS problems. MVP-SYNDROME is just another term for o.i. or dysautonomia. Whether or not the two are connected or coincidence seems debatable. But remember, some docs thinks dysautonomia is "debatable" i.e. "anxiety". If you type MVP Syndrome in google, you get lots of stuff including books on the subject. I think there is a clinic in Birmingham or someplace in the deep south. I have mitral valve insufficiency (mild) which was explained by my doc as a little problems with the flow or something but the valve doesn' prolapse on itself...this was explained to me years ago after an echo so sorry I forget the details.

Sorry you are in the state you are in, and rightly so. Though impossible to diagnose from a message board, you do seem like you might have symptoms of POTS. Is it possible to get a doctor to recommend you for a Tilt table test? Have you had one of these? And what does UVA stand for??????? If you were wheeled out twice in the last couple of months, did the doctors claim that was anxiety??? Read up on tilt table testing and demand one...especially if you are prone to fainting or near faints. Lie down quietly for half an hour..check pulse, stand up..does the HR go up 30 BPM or more? That is just a tiny test...but you need a doc that understands gravity issues aka Orthostatic Intolerance.

Ernie I just wanted to say I am so happy you get to try the PROCRIT. I hope it indeed helps you and that they can dose it for you accordingly (baby doses if needed at first!) I will look forward for updates from you as you have waited a long time for this.