Sophia3

Susan I don't even know what to say as you watch your child go through all of this. Thanks for the update and prayers and healing thoughts to Sara, you and her medical group.

Can you get a second opinion?? There is a med Xyrem which is modern version of GHB. I was in a GHB study in the mid 90's with a doc that found GHB GREATLY controlled Narcolepsy and FM and alpha delta sleep problems..and INSOMNIA--weird to help all of those, I know. I took it for insomnia but it did not help..this was pre ANS dx when we called what I had CFS and FM. This drug is NOT a stimulant but works to help a patient fall asleep & get restorative sleep and help the patients body create natural Growth hormone while sleeping...Provided you are INDEED Narcoleptic..or have the other problems listed above...it did not help my alpha delta sleep either. Was it your sleep doctor or PCP who gave you the Mayo results of narcolepsy blood work? if PCP you may want to discuss your questions with the Sleep doc face to face if possible. Dont' be afraid to ask lots of questions of things you do not understand. Good luck with getting more details.

Caffeine is fabulous for me in the A.M.!!!!!!!!! with out it my BP is like 86/46!! Two mugs full and I can start to get upright. ON bad days I might do iced tea or another cup of coffee about 2pm. I can't do it all day though as it makes me jittery. I knew a lady that found a Dysautonomia foundation years ago. DRANK real coffee all day to help her around the house. So we are all different. My ANS doc recommends the "as needed" coffee for me since I can't afford midodrine..and wearing off, midodrine gives me coat hanger pain. Coffee does not do that. ALSO Small pieces of good DARK Chocolate can help me feel better at times. Granted 'better' does not mean normal but maybe I can do a load of laundry or run a brief errand that day, or just get dressed other days!

Not seen her but THRILLED you got in so much quicker. I had heard a few weeks ago they got a new doctor which is great. We need all the doctors we can get INTERESTED in our problems. I hope it's a fruitful trip for you.

all4 family Glad I asked about sleep apnea but its interesting your supine hypertenstion showed up on a TTT for documentation purposes. If ONLY we could all fit in a neat little box. A pipe dream I know.

Not sure I can answer this question since I don't know all the variables. If you have SPIKES in B/P while sleeping, were you checked for sleep apnea? (That's a major symptom) along with snoring. But if your supine BP is low and then spiking w/o sleep apnea, I don't know what that means and would not dare give advice. If the BP is high consistently then "perhaps" raising head of the bed would help. But I don't try to answer questions like this that should be handled by a GOOD SLEEP specialist to find out more what is going on.

I hear you...was the hair color the cause or just odd timing and you were having a bad day? it's tough figuring this stuff out. I DO know I must do color thru scalp or with foil to avoid scalp burn. ALSO medications can interfere with the chemicals in the colors only we don't always know that, you know? so tough to figure out unless we have a chemist in the family! Hope you get it sorted out.

Unless you have supine HYPERTENSION raising head of bed often does not help many patients so keep that in mind. Not to contradict the "experts" but most agree that is outdated or only good for SHY DRAGER SYNDROME patients who have profound OH but ELEVATED BP while supine or sleeping. MY BP is very low supine or in A.M. Raising head of bed worsened that but it took me a few months to figure it out. ALSO raising it more than 5 inches feels like sleeping on a slide!! Truly not comfortable, I tried 4 or 5 inches YEARS ago and it made me worse. DDAVP helped for fluid loss at bedtime. Those wedge things for sitting up in bed are not the same at all....And watch for lower back pain. been there done that could right the book. We used some concrete blocks for raising a king sized bed and two male friends fixed it temporarily. Good thing as I hated it.

most all hair colors tell you in box to do an allergy test before using don't they? You guys do that first to check body reaction before applying on head? Been highlighting for years from beauty supply house but stuff in stores used to have strict directions about testing 24 hours ahead. might be good idea

Liver enzymes can often be elevated in healthy people and do not point to anything else going on. Sometimes a re-check will show normal and other times still elevated levels. I know a woman who's husband NEVER DRANK or anything and had really high levels 20 years ago and at first had problems getting life insurance. Finally all else was normal and they believed he never drank. He was a strict Baptist and had grown up with boozehound father so he NEVER drank. Sometimes its just a genetic quirk. A girlfriend of mine had a similar thing years ago. She is still fine and healthy. I think with so many folks getting them checked we are realizing they can sometimes mean something benign as well as something else going on. Of course you should follow thru with the doctor to rule out things but I did want to share that I have heard of this happening several times and can often just be a quirk. Certainly something to keep an eye on but many folks live healthy years with up and down elevations. Let us know when you get more follow up. If you are concerned, ask them to prob your abdomen or even ask for a scan if it bothers you. Nothing wrong with getting an ultrasound for peace of mind.

Futurehope I had to laugh out loud at the homicidal tendencies! yes, more exhaustion can do that. Though it's far from funny. Easy for "experts to tell us things from books". And again, LACK of sleep is the same as "Driving" under the influence due to the slowing down of everything. Add our exhaustion issues, it's AMPLIFIED. Also Thankful ASK to see if you have Alpha intrusion, or alpha-delta sleep disorder...common with FM/CFS/ ANs problems Also though most SLEEP SPECIALIST say keep bedroom for sleeping ONLY (or romantic activities) the best thing I EVER did for my 19 years of insomnia, is get tv with cable, or even better, DVD player..so you can play benign DVD's as you fall asleep. Put tv on a timer and you get no racing thoughts, or tossing and turning in the dark. In all my years or reading I think I only heard or read one doctor agree with my personally figured out theory. And by all means NEVER WATCH the news before going to bed. Local news is nothing but the "Rolling obituaries" of horror stories.

Gayle For you and others, though some test negative for blood work for Celiac, it is supposed to be "pretty accurate" but not as much as a biopsy. AND some folks have found adhering to GLUTEN FREE diet does help IBS and appetite. The thing being wheat intolerance but not necessarily Celiac....things don't agree with you. I don't get IBS but get BELLY ACHES after "nutritional whole wheat pasta, breads or English muffins". so twice in last couple years tried Gluten free diet..after a couple months I Figured out simple bathroom habits were changing due to hormones once a month, and the GF did NOT help with fatiuge and pain joint issues (especially hands) PLUS it's so freaking DIFFICULT for me to spend ANY time in kitchen these days, let along DAILY figuring out how to eat pure GF. However if I had constant IBS issues, I would try GF for a good 6 weeks or 2 months. If no changes then give it up. I have read of some folks testing negative for Celiac but STILL doing better or feeling better when they eliminated wheat. I do ok as long as I eat white bread for sandwiches or pizza. Also I avoid wheat cereals as even Cheerios adds "Wheat extract". so though not Celiac or really wheat intolerant, if you try to concentrate extracts I get stomach ache. Also YEARS ago I tried vegan diet eating "wheat based" meat substitutes which is VERY concentrated Gluten..gave me bellyaches but not severe as say, soy products which caused cramping and other issues..and another reason I "thought" A GF diet might benefit me but it does not.

Ok...I gotta be honest I did not read the first post on this as it's too long and I KNOW the diff between POTS and anxiety being disabled from full time work 19 years and part time 10. I have florid POTS. USUALLY most all the time when I lie down my HR drops 50 points and gives me relief. HOWEVER I did not have IST. I ALSO know HORMONAL FLUCTUATIONS especially during menses can help KEEP HR high..it may drop when supine but still be over 100. Also if you are DEHYDRATED the racing HR may take a while to drop after lying down. Sometimes IV's are needed or to push fluids orally. Just to clarify things. You can't make blanket statements about what's anxiety on a message board, folks. Or you may cause anxiety. @Angelika, I do not have IST but when severely dehydrated and or when I had sick periods- before my hyst, it would take a bit for my HR to level out but eventually it would. I understand though your situation, as I know others in a similar boat. This is my two cents worth.

You just say NO. Only YOU can protect your body and your health. Only you can establish your limits or as they say today "boundaries." If your parents are in business for themselves, they must learn to manage their OWN business better, themselves, without dumping on you. Do not let them "guilt" you into doing what you do not want to do. Sorry you have a sibling they can not count on but you cannot carry the world on your shoulder. Just say no. If they don't understand, than so be it. Screen your phone calls if they harass you. They will get over it IF they really understand the disease. Look in the mirror and practice saying NO. One can not go thru life being a People Pleaser at the expense of one's health OR wanting to live an authentic life..where you answer to yourself and YOUR NEEDS FIRST. Not selfish, just protecting yourself so you can still function. And remember, you do not need PERMISSION from a message board. You already know what you need to do in your heart. Just find the courage. Say the old serenity prayer. Good luck.

the patch could be too strong for you. I used low oral estrogen years ago (even tho still had periods) as my symptoms said estrogen fluctuated all over. I took low dose estradiol and put it under my tongue to absorb better. I tried the patches but they were too strong. If it does not help. maybe your body doesn't want the estrogen supplementation. Just do what you are comfortable with doing. Gotta be careful with HRT. Also why did he NOT do bloodwork? My endocrinologist always checked my levels...all of them..and what's normal for lab may not be for our body..we may need more or LESS. But to take hormones without blood work would not be my personal choice. I agree blood work does not tell the WHOLE STORY but just curious...then again, I know I would try anything temporarily for relief!! sorry if not making sense...it's late and I am tired. good luck, but honestly, adding estrogen should be noticed relatively soon! IF that's what you need.

Good to see the doctor is expanding more bases to investigate. Glad you had a good visit. Hear's to hoping you have improvement SOON!!

Let us know how your doctor's visit went. I am also so sorry you are dealing with this at such a young age!

My CFS dx came first (it was called another name in 1985 and I worked around it) then got worse in 1990. POTS is known to cause horrible fatigue (Like running in place all the time with high HR) so for some of us we get the double whammy..CFS, POTS..and FM, sleep disorders. Like Nina said if you are doing good self talk, then it's not depression or you would be crying into pillow or zombie. NOT that I have not had days like that. Sorry you are feeling so badly. Your day today sounds like me everyday. Hope you get answers for YOU and your situation.

Jump, I have a couple of family members that would NEVER do chemo...but would meditate and massage, etc. One is a massage therapist who's late husband was a conservative M.D.! So ya never know. Remember years ago we thought STRESS caused ulcers? Then they determined it was that helicabector (sp? Helicopter! ) bacteria. So, yea, we could go round and round on the mind body issue...just had to share I have two family members that would do the meditation bit. I think most would weigh the odds and risks. THEN decide.

Hey I just clicked on your profile!! if you are just a teen ager it's HIGHLY UNLIKELY you have SDS!! Could be a hormonal thing. Sorry if I scared you I just had no idea if you were a man or woman..and when I saw your age I thought "HOLY SMOKES". they do not have SDS..that hits people usually in their 50's!! Keep us posted on your doctor visit though. Good luck

P.S. Here is somebody asking difference in Pure Autonomic failure and SDS. Hope this helps too. It all gets confusing when diagnosis overlap! http://www.medhelp.org/perl6/neuro/archive/12877.html

Ernie, If your comments were directed at me, please chill out. I was not attacking YOU. But if you ever almost died from pneumonia, it's no walk in the park. And let's face it, the L.O.A. i.e. fits the "it's all in your head theory" and all that stuff from "The Secret" Says we all "Ask to be sick". I kid you not. That's all I am sayin' Doctors saying "we did a test and can not find what is wrong. Therefore, it's in your head" happens sometimes. We've seen that happen.

Have you been tested for MSA (Multiple Systems Atrophy) aka SDS (Shy Drager Syndrome) Might want to do that if you can no longer stand. Hope you have a doctor to investigate this. Here is a link but you have to jump through pages for info. http://www.mayoclinic.com/health/shy-drager-syndrome/DS00989 Also do you have HIGH BP when lying flat...that can be part of this. SDS is where elevating the bed while sleeping can help. UNLIKE those with low BP while supine, who elevate head of bed and feel WORSE. I hope you do not have this version but worth investigating.

Psychosomatic pneumonia???????? I had REAL PNEUMONIA as a kid and that is serious. Good grief, are we going to start labeling EVERYTHING Psychosomatic???????? This comes under New Age junk in my book where they love to blame the sick people. *sigh* Some of this thread is not making sense to me with "everything" under the planet getting a psycho label on it suddenly. Funny how many are insulted here when THEIR DOCTORS labeled their ANS stuff in their minds..so not sure why suddenly this term is being thrown around towards others. ?

I am confused to this post as I thought most of us are INSULTED that psychosomatic is thrown around so much to many patients here. So people are saying some PSYCHO illnesses do cause physical illness..there fore we just change OUR THOUGHTS and the ANS problems go away? Not sure where this thread is going. I thought we all knew we are REALLY sick and it's "just not in our minds". Caps are for emphasis, not shouting.