Sophia3

joanie when I mentioned GHB has no residual affects, I meant in the body...or so science used to say. Used to be the drug didn't show up in autopsy. Years ago it was used as an anesthetic in Europe I think. As far as your daughters reaction, anything is possible with this illness and meds. I used to have some weird reactions to the GHB and other times it would make me sleepy...other times fed the wired/groggy sensation. The weirdness would be like my muscles would act strangely as I walked around the house. I forget what that was called but it's been 10 years since I was in this government study for the medicine. I hope your daughter gets help. I was a complicated case myself. Also before taking the second dose, many people experience 'the dawning' effect about 3-4 hours after the first dose. The drug has a short half life. Some would wake up and be clear headed. Many people would take advantage of this and do some paperwork. I remember once waking up with details of a recipe of some dessert I had made a few years before. .. My sleep doctor found that interesting. Also I would double check my check book before going back to sleep. I was on the study for months. It was weird but interesting and I was grateful for the opportunity to try it.

A week long sleep study is absurb at this point. Has she had an overnight study? The GHB I drank was just a mild salty, flavorless mis. IT IS VERY SAFE to take and has no residuals left in the body. Your daughter is a complicated case but you can NOT TELL about the brain when sleeping unless you have a sleep study with electrodes hooked up. Has she had that done? This article mentions a study by my ex sleep doc but my study was in the mid 1990's. http://www.fibromyalgiasupport.com/fibromyalgia.cfm/id/4850

hmmm...I am a little suscicious of this study ONLy because most docs know the statins can alter/impair/ruin liver function. So I would not take these drugs. I have read and heard too many things for years about the liver damage though the POWER drug lobbies have promoted statins as the wonder drug. But if it sounds too good to be true! Sorry, just heard WAYYYYYYYY to much bad stuff about these statin drugs. Here is one blurb from Dr. Weil http://www.drweil.com/u/QA/QA326645/ Also, Dr. Mercola can be a bit of an alarmist but he is correct about the over use of statin drugs. http://www.mercola.com/2003/aug/27/crestor_statin.htm

Hi I was in a GHB study years ago prior to my POTS or ANS dysfunction dx. so the sleep doctor had no idea about that stuff. Just knew I had horrible chronic fatigue. Xyrem is GHB. I had severe INSOMNIA that the sleep doc hadn't seen the likes of and alpha-delta disorder. I get very little 'refreshing sleep' when I do sleep. It also didn't help my fatigue or fibromyalgia. a few in the study had outstandiing results. Also the drug refused to put me to sleep some nights and it got so I had to take Klonopin with it. Also you have to take a second dose 4 hrs after the first to sleep thru the night. But we now know with ANS problems, depending where are catecholamines are, the same drug can hit us differently. I drank the medicine in compounded form..you were supposed to get into bed and drink it it was so 'powerful'. I was often awake 90 minutes after taking it. But many labs around the country allegedly are still using it for studies. Good luck if you get a chance to try it.

Sorry for what you are going thru. My heart aches for you being sad so far away from your grandfather. Your post was very detailed and poignant and beautiful as you described the situation. I felt very sad for his declining health, and happy for your grandfather (surrounded by his loved ones) and I don't even know him. It must be so difficult and yes, this POTS adrenalin junk can WIPE US OUT!!! as if it doesn't the normal person. I lost my brother in law this past summer and he had been in my life 41 years!! Since I was 7. he had a heart transplant 8 years ago but his death was sudden. i was a wreck at the funeral as his own kids my nephews and my neice consoled me. it's ok if you can't travel to be with him. Three weeks after the death of my brother in law, my 85 year old mom got ill and flipped out..thought it was alzheimers but it was other Mama drama--long story, doesn't belong here!!. Anyway, long story short, this ALL AFFECTED MY ILLNESS GREATLY!! I lost about 15 lbs...coudlnt' eat. My doc told me to take my little .25 xanax whenever I needed to get me thru the streess--every 6-8 hours during the crisis modes. but I kept FORGETTING to take it but once or twice a day. What an idiot I. I kept feeling like the accelerator was STUCK ON MY ADRENALIN and would find myself not breathing and holding my breath...yet I had access to meds to help me. We also have cognitive impairment or "swiss cheese" brain as i call it...stuff slips thru the holes. If you have ACCESS to ANY MEDS or HERBS to help CALM YOU, by all means, do so!! It is the ONLY way I could "help" calm things down, but I still felt the pain. So please be KIND TO YOURSELF IN THE NEXT few days. We so need it for our wacky ANS situation. I am not meaning to make this post about me but you are having a double whammy yourself. A LOSS in your life, but you can not BE THERE to witness, and SHARE your grief. My elder mother was getting sick before my brother in law died and chose to stay away from the whole situation. So you do what you must to protect yourself but your heart, thoughts and spirit are with the ones you love. Of course you feel he is gone already because in some aspects, as ill as you mention him to be, HE IS. It just made me feel good he said he had a good life as many can NOT SAY THAT!!! That is a blessing AND to have all his loved ones around him. It's bittersweet but something they will all remember of their father. You keep in touch by phone and email the best you can. Yes, it's not the same as being there but I can't travel either so I feel your angst! Just be sad, feel the pain but when you are overwhelmed, do NOT hesitate to ask for meds to help you thru...nothiing to be ashamed of, ok. My thoughts and prayers are sent to you in this posting. Have a good cry, feel the grief, and in between, if the despair is too bad, try to watch something funny to distract for awhile!! sometimes it helps and other times it does not!! I happened to get a DVD of Bob Newhart from the libary I had reserved and got it one month after the passing of my b-in-law. and Newhart looked a LOT like my brother in law did in the 70's!!! And it was comforting to me...but woulda been too painful for my sister and her kids. My brother in law even had the nick name Newhart when he lived in Florida due to his reaction to situations. It's a dumb thing to share but whatever it takes to get us each INDIVIDUALLY though the rough spots. Comparing a tv actor to my life but it did fit. Take care, Pooh, and keep us posted on how you and your loved ones are coping.

To the others who recommend counseling for you RIGHT NOW, I second that vote. This message board may be support but is NO REPLACEMENT for face to face guidance and counseling, which is where you are. Focusing on the husband and kids is just a distraction as you suppress the real things bothering you. Sometimes we think we can't afford something but if our LIFE is at stake, you can't afford NOT to do something. There are many ways to find a therapist and I hope you can and will. Mental illness problems can strike without warning and a thought for a few seconds can change some lives forever. I have a couple of friends and an in-law who lost depressed loved ones to suicide because THEY didn't want to burden people with their own problems. Not that I am saying you are thinking of doing anything so drastic but I don't believe in playing around with the complexities of mental illness...... especially since you were willing to check yourself IN TO A HOSPITAL then changed your mind. I worry about what changed your mind but I also greatly understand fear of the unknown. More importantly YOU are NOT A BURDEN and you are worth whatever it takes to get better. Most hospitals and clinics will set up a payment plan to cover out of pocket expenses. Sometimes expensive meds just aren't the answer as much as face to face counseling. The fear of possibly dealing with whatever may be really bothering is a crucial thought as well. I do not know you but I know enough about mental illness problems that they are like ANY SERIOUS ILLNESS and can be life threatening in one way or another. Please be kind to yourself and think about picking up that telephone and seeing somebody ASAP. Please keep us posted and forgive me if I sound harsh. Peace

Paige I am glad you have the wisdom to seek the help you need. Not easy for most people. I hope you feel better soon or find some tools to help you cope until things turn around. Keep us updated Sophia

I posted a site on exercises for BPPV in another thread : http://www.tchain.com/otoneurology/disorders/bppv/bppv.html and here are a couple other helpful sites. Dizzy site written for opticians but very informative. http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html A site on Balance disorders and what they are http://www.nidcd.nih.gov/health/balance/ba...e_disorders.asp

I mention the DISINISSUES web site in another thread. I suggest you sign up for their group. It stands for Disability Insurance Issues. Good luck.

poohbear I strongly suggest you sign up and read and look in the fils of DISINISSUES website. It is a private groupn ONLY available to read in email. They are not a support group but strictly a disabilities group whether its Soc Sec or fighting the private system industry. You might want to email your question to the group if you don't find it in their files. Warning...sometimes the moderator Sarah can come off as snippy but she is very astute and helpful and runs the group. There are over a 1000 members and many are attornies so you get great educational advice as they can't really call it legal advice. This site is a MUST JOIN for ANYBODY on disability. It can help you jump through the hoops of the various situations we often find ourselves in and yours would be a great question. I think Nina added that site to the disability section. Otherwise, I will post it here later when I have more time to look things up.

Susan i can NOT tolerate dramamine but what I sometimes got DESPERATE for was benadryl. It also has anti nausea effects. I would get the liquid children's version...the generic Kroger brand. You can take literally pediatric doses. It can help when the vertigo is bad but still don't drive or operate heavy machinery (vacuum, blenders, lol!!) I also would watch the sodium when in a bad dizzy spell. It goes against what we need for POTs but I would find over dosing on salt would make me worse. Also, i get the sensation of plugged eustachian tubes and my ears would sometimes have a subtle ache. Another sign to cut back on salt. This vertigo is a real catch-22 with ANS problems but PLEASE keep doing the exercises and build up the amount you can do. It truly does help. Matter of fact, with the recent weather changes lately, i probably need to start them up again for maintenance/preventive purposes. My sinus pressure is the pits. I live in Miami Valley area of Ohio known as "sinus valley". Years ago, the Shawnee Indians didn't even want to live here as they called it "sick valley". But I digress....good luck. And let me know if the exercises help.

Here is a site that helped me immensely. There are some exercises and an animation gif (just hit the forward button when the window comes up) and it shows you how to do the exercises and exactly how to position your head. http://www.tchain.com/otoneurology/disorders/bppv/bppv.html I did this over the last couple of years when my vertigo got really bad. My endocrinologist dx my "rocks in my head" bppv meaning I had calcium deposits in middle ear but quick exercise. He had me lie on side of table with head hanging over the edge and to sit up and follow his finger. This was VERY MUCH like an amusement part ride --I could NEVER handle those--and I got VERY DIZZY and queasy. So he told me of some exercises to do and they did help. Start off slowly. WARNING!! YOU WILL be much dizzier and nauseated, probably, after doing these exercises. That is normal as the repositioning of the calcium bits re-arrange in the ears. But it got better for me. Just hang IN THERE!! I found this site to help me immensely. Hope it helps you. I would say check with your doctor but if they are ignoring you, you have to just do things to help yourself. Good luck and let me know how you feel in a couple of weeks. Follow these exercises to the letter!

Lois, I am so sorry to hear of your struggles with breast cancer....we none can imagine what it is like to be in your shoes....you are in your own personal journey and it must be such a climb. I wish you the best and I can't imagine why you thought your posts are irritating. I don't know you but am sending positive thoughts and prayers to you as you continue this challenge. I hope you find something to ease the symptoms and keep us posted as you see fit.

I never had any IV during tilt 8 years ago. My HR raised 55 beats in about 65 seconds. It showed definite ANS to my cardio at the follow up visit. But his idiot assitant who was PRESENT for my TTT claimed my test was not conclusive so I went home depressed out of my mind. Then I saw my cardiom 2 weeks later, who said the test confirmed my endocrinologists suspicious of ANS problems. The "doogie howser" doc present during my TTT spoke to the techs that he didn't believe in giving meds as they gave false positives for results. So it depends on what the doctor orders for the patients and probably the pts history. I am symptomatic daily, hourly...all the time. As others said, simply call your doc and see what his protocol is. Also, when I got a copy of the print out of the test, it really helped to see I had POTS. My BP didn't drop much but the tachycardia is what keeps many of us exhausted...though I can't do beta blockers except in baby doses on really bad days. Just remember, the worse you feel DURING the tilt, the more answers the doctors should get from your reaction. I felt kind of crummy during mine (hot flashes, anxiety sensations, terribly lightheadedness, and sweats--back when I still perspired normally. Some people feel fine during the tests. So just remember, the worse you feel, the better to prove ANS problems.

Great news! Just read this at NDRF myself! It was wonderful to hear this update!!!

I love goats and think they are adorable but only occassionally see them along side of the road in the country. My sister has some massage therapist, vegan friends who have an animal sanctuary on nice property. They recently rescued a goat named Elvis (Named before they got it) I saw his photo. Do you raise goats?

Don't worry about bursting any bubbles. I remember reading about the Ampligen trials for CFS (Chronic Fatigue Syndrome) about 10 years ago. Was allegedly a 'miracle' for a select few but I never did hear the long term and the percentages. Plus it was VERY EXPENSIVE, experimental and only the wealthy could afford it. So....I have learn to be VERY LEARY of ANY "cures". I was also very fortunate enough to be part of a GHB study with an ex sleep doc for FM/CFS and sleep disorders...but after many months, it didn't help me...but at least I got a chance. Only a handful of people had great improvement and one woman had a miracle of sorts. So who knows the multiple etiologies we all have even if we do share MANY SIMILAR, DOCUMENTED symptoms. And dont' get me started on the MLM stuff people sell! My sister and some other family members are selling expensive Xango juice and I was told that it was "cleansing my system" when I tried it. Hello, it was also washing out my electrolytes. I don't need laxative effects!!! thank you very much. So, I tend to just keep my outh shut and listen or tell folks when they don't know what they are talking about. Somehow, I think one of the autonomic sites would be posting SOMETHING about this new mystery study of Dr. low's. Let us know what you find out.

Did anybody see signs of tooth grinding (cracked teeth, lines inside jaws) I have done this for years and the mouth splint made my TMJ pain worse...so I don't use it.. But I get "tooth aches" from grinding but not the severe pain you mention. I only wanted to empathize and hope you get an ANSWER soon. Can they do nerve pain tests for the face like they do for the body. The EMG tests? I can't help but wonder if somebody is over looking something. Do you use toothpaste for sensitive teeth? If not, try it...if so, make sure it isn't the type with WHITENER in it as that is terrible for your teeth and can make them sensitive. W/o toothpaste for sensitve teeth I AM uncomfortable. My ache pain moves around...something I think its a lower tooth, sometimes an upper. It's a drag and a dull ache. So I hope you get an answer soon and keep us posted. I also clench my mouth during the day a lot from adrenalin overload. I wish they made teeth pillows for the mouth guards and not all that hard stuff that tastes like poison...and no doubt outgasses in our mouths.

For the record, I don't now much about personal issues of Chiari and all that goes with it either. I do know some folks who have been through it all though with surgeries and such. I did learn something from this post. The next time I don't get replies, I will simply ask folks to respond!! This certainly worked for you and I hope you feel better about things.

Thinking of Linda and Dan. Sending thoughts and prayers across the miles. Hope the universe delivers them to you. Also sending prayers to the surgeons involved. Sophia

From the NDRF site: Hello Everyone, it is quite late as I post this, but I need ALL of your Prayers and Well Wishes today for Dan. This is a Serious Operation, that requires alot from the Medical Experts who will be doing the surgery. I ask that Today as he comes to your mind, you say a prayer for him as well as for Linda and the kids. You have All been blessed by Linda and Dan, by their creating this (NDRF) forum and spending countless hours to help so many of you. Today is the DAY to remember Dan. They are grateful to those of you who have taken the time to remember them through cards , well wishes and prayers. Always, Lisa

I have sponge-bathed for YEARS! I had a walk in shower when I was living with my elderly mother (before her insanity and mood swings ran me and the cats out) My brother put in a nice walk in shower, with two seats and a hand rail. LOVED IT but even that was too much everyday. Now I have to step over a tub and no seat. My mother has an old pretty shower seat at her house in her tub but usese the walk in shower now. She doesn't want to part with the shower seat cause it is PRETTY. All the ones on the market now are UGLY, made of vinyle and SCREAM NURSING HOME! SO I would like to find an old used metal shower chair...or talk my mom into using hers. But sponge baths can save you. That's how folks did it for centuries before indoor plumbing. I wash my hair in the sink daily or every other day.

HI My swiss cheese brain can't remember your post that you are talking about. I must not have had something pertinent to add. But don't feel like the Lone Ranger with NOBODY replying or very few replies to your postings. I have had it happen to me as well so I just try not to take it personally... I have had a very ROUGH summer with the loss of a family member thru death and an 85 year old mother who is crazy (many of us say that about our mom's but in our case, mom is now certifiable) So my fatigue levels and cognitive problems have kept me from reading many posts. Frankly, my fatigue lowers my tolerance levels for visiting message boards. And when I am very tired, sometimes i just don't feel like replying. I just lurk. I do remember asnweing a question on blood sugar here or someplace. Perhaps if you repost your question (that didn't get answers or try a better title maybe? To get attention) folks may see if they have anything to ad. Good luck.

Katherine In today's world where everybody has an agenda, it's really sad we don't get the TOTAL picture of the story behind medications. My personal theory is I will not use a drug unless it's been on the market 5 years. OR been in another country for YEARS when approved in the USA. Yes, some drugs DO cause harm but it is so hard to find out the percentages of what's real, and what is released so the media can whip us into a frenzy. Whether it's news or weather, I sometimes feel the media's goal is to scare us all into hiding under the family bed with our pets, a blanket, a bottle of water and a can of Spam! lol. Not that I am cynical or anything.

Morgan Great post. I was going to post something similar but you already covered the bases. Reminds me of the joke that 90% of the people who have been in car wrecks have eaten bread 12 hours before the wreck. Does this mean bread causes car accidents? LOL In today's world, everybody has an agenda and it is tough to tell fact from fiction, science from junk science, etc. We need to be aware of the problems of some drugs but in today's world, I have read that aspirin would never pass FDA approval. But then again, don't get me started on the FDA!!^%$#@! Didn't mean to digress, Morgan but my swiss cheese brain does that a lot these days. P.S. See this anti-aspirin site! Kind of a SCAREY site but still, it does contain facts. http://www.juiceguy.com/ASPIRIN-side-effec...ude-DEATH.shtml P.S.S. I also think docs hand out TOO MANY scripts for SSRI. They should be monitored or pt told to see a therapist if depression is a big issue. My sleep doc from several years ago, put me on Zoloft...it can help with some sleep disorders though. Remember, the news today is all about SCARING US. Heck, even animal planet is FULL OF STORIES I can't watch...animal abuse, animal fights, animal cruelty among animals. It's sick what folks call entertainment. As the media will tell you about leading news stories. . "If it bleeds, it leads!"