Sophia3

I only shower every so many days, and sometimes it's a week (Lately bad standing/upright times!) In between I sit on chair in bathroom, and do sponge baths. To wash hair, I kneel on chair, lean over and wash hair in sink in bathroom. You can also do this in kitchen if tall enough chair to kneel on or you yourself are tall. It's been YEARS since I could take a shower and do something afterwards. I RARELY take baths but can do those easier in cooler weather but only at bedtime. If your orthostatic tolerance stinks, you choose sitting shower/sponge bath over anything else that day. Takes all my energy. Oh and get a shower chair!! could NOT do without mine. I have this down to such a routine, I don't even know how to explain it.

*&^%$#^! Sorry you missed the call, girl. :-( I will be anxious to hear your update. Did you get a prescription for xanax for yourself with all that's going on? Just kidding, sort of....but all this waiting can wear you out...as you know.

good thoughts and prayers her way

Angela I am so like you when WAITING for answers to things...especially for other loved ones. xoxo

I take a xanax sometimes when I think ahead before walking or doing exercise. It HELPS with adrenalin surges so I don't get so tachy. Klonopin is in the same family of drugs but allegedly works on the GABA receptors in the brain and MANY benefit from low doses during the day. .25 xanax on some days, not all, calm me and help me push the energy to get through a small task. I've also heard, YEARS ago, Vanderbilt found some pts helped by Ativan. p.s. I have hyperadrenergic POTS but my BP is often low, especially in the morning or when laying flat. likr 80's over 40's. It may spike when I first stand and that's normal too

Good luck with the move and everything....no easy thing to separate....and I hope you can find computer connection via library or somebody.

Good luck in your remission and whatever helps your INDIVIDUAL case. MANY have ANS issues...some temporary. Many of the few men over the years on boards have been blessed with a temporary version. Also, it's much more complicated for women due to female hormones that mess with things and fluctuate WILDLY as we age. Might I add I saw a lady on Joy Behar's show last week that spoke of the DANGERS of "positive thinking." This author had cancer many years ago and was mad and ticked off and used the anger to fight the illness. Dr. Weil in a book years ago mentioned a sweet older lady with a good attitude, who got MAD when she got ill. Again, she used her anger to her BENEFIT and coped better than any patient Dr. Weil had seen. I second many of the posts here that positive thinking alone could kill many. (Not to go off topic but I wonder if the THREE SEDONA sweatlodge deaths were people with mild UNdiagnosed ANS issues....but I digress) So for new pts or those in search FELLOW DYSAUTONOMIACS can help more than many CLUELESS doctors. So again, good luck but if a positive attitude was ALL it took to heal ourselves, there would be no NEED for DINET.

Ok. I only rarely take midodrine due to the costs. Shire no longer has patient assistance program since the lousy generics came out. Mylan generic was horrible and I had to return it and was given money back for it (LONG story but it crumbled & did not work for breaking in half) Since generics are so poorly formulated with fillers & junk, I'd love the BRAND name but it's twice the price. I always got the 5 mg pill as I only need 2.5 so I would break the brand name in half. It was easy to do. It was well formulated. To BUY the lower dose is much more expensive as the diff in price between the two is about $10. If you PAY all meds out of pocket this is a huge issue. What I want to know is has anybody taken the SANDOZ version of midodrine & does it cut in half easily? The Mylan version was a thick, crumbly mess. Any feedback would be appreciated on this SANDOZ brand of midodrine. It's the one COSTCO carries & they have best prices. COSTCO has to get the brand available from their supplier. Thanks

Potsgirl I don't see Dr. Oz lasting long if he NEVER goes into detail. Good grief I have tried watching his show 3 times and never make it an entire show. Wow. I could do a more detailed show then he does. It's a disgrace really. If one is clueless about things you will NOT learn enough from his shows. Pass on that alert. ;-)

Media got the info screwed up. SUCH a long line when they OPENED, no more were allowed on the property within a couple hours of opening. BUT They did continue to give shots as I heard the screaming kids on the local radio news (WLW) at 2pm and 3pm. Then 6pm news showed the folks cleaning up after the day. Now they are saying more shots tomorrow when earlier, Cunningham made it sound like they were OUT of the vaccine. So bad mixed messages...Rain made a mess of car parking and lines..and it was getting out of control, the crowds. So it was a mess in more ways than one. But earlier I also was given impression the place was closed down due to running out of vaccines. Can't count on National or local media to give out facts these days, can we?

Thought of you when I saw folks lined up at local Fairgrounds for the vaccine...what a mess and WERE the high risk patients getting the vaccine?. Keep us posted, Girl. Sending thoughts & prayers & energy for you to keep an eye on things...no easy feat for a busy mom/wife like yourself.

UGH!! Don't get me STARTED on the Sedona deaths! my sister has done local sweat lodge for years but small amount of people and they pay attention to how you are feeling. argh. I can't go w/o AC let alone that. I read Teitelbaums' book years and YEARS ago so excuse my cynicism. Know all about CFS and Fibro...dx with CFS in 1985. Somebody needs to do AN HOUR on Dysauotnomia...all these tv shows are made for ATTENTION deficit disorder folks. Shame really. Dr. oz is not big on details so don't watch his show much..but I've been studying nutrition and health on my own since 1980...so tend to be enlightened on most things. I swear I could teach doctors a few things. Couldn't we ALL !!!!!!!!!!!!

Well that was a bust. Some quick segment that glossed over entire issues and I never heard fibro mentioned so turned off after first segment. ...they said it was treatable & causes weight GAIN...not really doctor. I've lost weight after being fat or chubby my entire life!! sigh...

Tx for the heads up. I MUST be honest though and wish another doctor was going to be on here. Teitelbaums book YEARS ago suggested some PRICEY things to treat CFS and has really made $$ with his personal agenda...sigh.. Hope to remember the show later today to see how it comes off. I like it better if doctors aren't selling a CURE...then gain, Dr. Paul Cheney an Early CFS EXPERT was charging $5000 for FIRST office visit about 18 years ago...so once again, if you are poor, you can't afford health care whether it's medical or alternative..but I digress. I tried the affordable things in Teitalbaums book years ago and they did nothing for me...has some good ideas but nothing is concrete. especially with fluctuating ANS !

This year was horrible for me...new location, same surgeon and 3 hours waiting. They used the new digital mammograms and the tech had me HOLD MY BREATH too long. The worst thing for ME is breath holding (can't even sing or do simple breath exercises) Between the discomfort and breath holding, I had to sit down in between views.I was counting to 20 and holding my breath..NO WAY..instant dizziness/faintness feeling. I finally told the lady holding my breath so long triggers HR and BP issues. SO she said she would only say hold my breath when I needed to..which was 6 seconds. HUGE difference. Cripes. The minute she got me fixed for views she told me to hold my breath WHILE she walked across the room. THEN she waited until she got by the machine to TAKE the views. in the 10 yrs or so I've been thru this breath holding was never an issue..the pain YES as I have breasts full of cysts so smashing while tender HURTS..but other than this, it's never such an issue except sitting up for so long. This year was the WORST for waiting though....sigh She also offered to have me sit in a chair for some views but by that time, I just sat with knees against chest for a moment or two and that helped.

Bell & Streeten were the first, not Dr. Rowe. I just want to back that statement up. Dr. Streeten came out of retirement to study with Bell...dr. Streeten was the FATHER of Dysautonomia studying it decades ago and writing a book. What he found to be fatigue from OR was accidentally being studied and correlated by Dr. Bell many years ago. I got his book (Streeten's) 10 years ago from a hospital libray and skimmed it...interesting stuff...even tho written years before. so sad he died soon after the first NDRF conference...THANKFULLY i have him on video tape. Sweet devoted man! EDITED to provide this old link from 1997, gives brief history on Dr. Streeten. http://www.anapsid.org/cnd/diagnosis/hypovolemia.html

Will think POSITIVE THOUGHTS and sending a prayer your way. Stay focused on the moment (or minute by minute if you have to) As mentioned just talk to the anesthesiologist...their entire JOB is working on the ANS via drugs and they can learn what to look for. Good luck with the surgery and keep us updated.

Oh my gosh! what a week for you...I am so sorry you have so much on your plate and especially the loss of your grandmother. Take care of yourself in all of this....

I took it way back in 1995 when seeing a sleep specialist..>i think it was for side effects from Zoloft..but it's used for so many things. The side effect was a sexual issue..and the amandatine HELPED but made my Heart race IIRC...been too long to member.

just got Dr. Bell's email, Lyndonville News on this topic (he worked with Dr. Streeten years ago abotu CFS & OI links. My INITIAL dx was CFS in 1986 or 85..forget year now) ""By the way, people are already asking me if this is related to the retroviral sequences we published in 1991.'' Dr. Bell would love to be able to test some of the kids he saw with CFS to see how this matches up to other viruses/symptoms.

Sorry to hear she is so OI challenged and doing poorly. how sad for her and her family.

Midodrine is similar to ritalin, but Midodrine does not cross the BBB (Blood brain barrier) so it does not give you the jitters. Everything else does...other stimulant pills or coffee etc. Many can take old fashioned, low dose amphetamines as they are MUCH CHEAPER than midodrine but if you have really high HR and get the shakes from adrenalin, not good idea. I need coffee in the morning but could not drink it nonstop all day but SOME can thus coffee is their own 'midodrine or ritalin' substitute. Whatever works.

Yay! Glad to read of another positive doctor experience.

If you have figured it out to flour products, see about getting checked for Celiac. It can cause abdominal pain, too. Of just TRY a Gluten Free diet. Many web sites about this and even online shopping sites if you don't have GF items in your stores. The breads/dessert things can be pricey but just try using more rice and potatoes in place of bread. Easy to find shopping list of foods to avoid as well. Might want to run this by your doctor but it's something you can try on your own. My sister knows of a lady who is not celiac but FEELS better when she avoids gluten..it's like a wheat intolerance but not Celiac... As far as Celiac itself goes, many symptoms of Celiac besides lower GI distress. You may want to examine gall bladder stuff too. Good luck

Alicia some of us with chronic health problems have mitochondria disorders that are VERY complicated and timely to figure out. And if you have it, not much we can do about it. Those people have wildly different reactions to vaccines of any type and probably should avoid them. I have not had confirmation of mito issues but it's common in many health problems thus the wildcard for some of us in NOT getting any flu shot. Your reaction sounds like many I have heard from healthy people...so thus I've chosen not to get the shots as have some family members of mine. If your family doesn't do well with them, chances are we will not either (those of us blood related) I also worry about the so called mutated virus shot (that many say does exist, others say it does NOT) as that can set you up to get the virus again and again. YIKES! There is no EASY across the board answer. You really need a doctor you TRUST that knows you and your history..as well as some pharmacists or people giving out the shots who can give feedback on reactions. Folks with COPD type issues are at risk for any illness thus I can see them taking the risk to get the flu since it can impact the lungs.