gwen

I'm showing my husband LuLu 's list of sx. Last night I sat down and said I saw sparkles and he didn't know what I was talking about. I thought he was kidding. He wasn't. I thought he undertood. I know he's trying! But how did he miss that , and who knows what else in the last 3 years? Thanks!:-)

I 'm so sorry!! I'm not from your area but it's so upsetting for me to hear about these loser Dr.s! I was at my cardio a few weeks ago and my dr was busy with a new patient . seems her ortho had sent her to my dr because she was Egyptian (my dr is Lebanese) and thought she could help her. well all said and done she has no money, no citizenship and little english, a woman, and my doc speaks even less arabic. My dr was at wits end shen she came into me. She couldn't believe the ortho, who is usually a nice guy and very good, would send that patient to her when cardio wasn't the problem. I told her it was bull**** and we should return the favor as I had a large pile by the barn and could deliver it to his driveway in the dark of night. If he could dump a patient , we could do a little dumping too. She's so nice she thought I wanted to dump it in her garden, but I explained that no, I had an evil streak and I thought his driveway since he'd have to shovel it to get out. She really had a good laugh, but this stuff of just dropping patients because its too much trouble to think, or to look up some info, fill out some forms, etc. has just got to stop. Iwish I was closer I'd deliver some stuff in your dr's driveway for "his garden" for the sheer joy of it!! I'm in the mood for it!:-)

I noticed that someone mentioned they sleepwalked when they took Ambien. There were quite a few articles in the last two weeks in ap about dangerous side effects of Ambien especially in those who drive. They are now taking a closer look at the med. before taking it I would google a little. if you don't drive I guess it wouldn't matter. I agree with the appetite. I can't use it anymore. it doesn't work for me. :-( I find it interesting and sad that our friends from out of the us have trouble getting meds like klonopin.I first started on it for anxiety but then found it helped with ncs symptoms. Psych I was going to at time agreed my problems weren't mental (thank you!) and said 90 % of us drs. prescribe amytritilene while 90% of Psych prescribe Klonopin. who knows but I've done well with klonopine and I have to have it to fall asleep although I still have leepless nights. It can be addictive which may be why some countries don't want to start it. I would print of the dinet page of things that help and click on klonopin and take or fax to dr and show why and where it might be indicated. I would be wary of the ambien now though. They don't know about lunesta and celesta because they haven't been prescribed as widely yet. good luck , I hate not being able to sleep!!

Couple days late but Happy Happy B-week!:-)

I took the wallpaper down in the bathroom last july thinking I would have to put it up before my kids bday. Well it still ain't up! I'm so sick of it and keep trying to talk myself into it but what you are describing is exactly what I think will happen. My mother in law wants to come down and help but I know she doesn't understand I might only get one strip up and then have to lay down for an hour(or longer). I hope you start feeling better soon!

I went on Welbutrin about a year and a half ago for depression then found out later when I was having bad symptoms , it was a also indicated for treatment of NCS. I am on the full dose and I can say it has def helped the depression. I still have my days with that but it is much better. Now since I started it before my ncs symptoms flared majorly I'm not sure if it helps the ncs but if anything I would like to increase the dose. I do disagree with the commercial that says it has a low incidence of a certain side effect, but with everything else I'm on and the NCS/POTS etc, it may not be it's fault. If you have had a 6 day headache stop taking it!! call doc and tell him what you're doing and just observe if it gets better. no one should have a 6 day headache!! I'm so sorry for you!!

I think i would go to dr. about it. It is possible to get shingles in mouth and throat and not in the usual areas. if treated soon enough it definitly shortens the time of recovery.

Congrats! So glad the day was completed! Now get som R&R!! Were you that nervous the first time?:-)

I know I must have blood pooling but my legs do not swell or turn colors no matter how bad I feel or pass out. I tried the measuring thing and its the same. I am thin (and am beginning to lose too much weight) but I would think I would still have discoloration. My dr checks my ankles at every visit and shakes her head. she can't figure it out either.

My dr isn't familiar with cerefolin but has agreed to prescribe it, could someone share their presc amount with me so I will no a range for my Doc?Thanks!:-)

I have had very odd readings at home and at the drs. offices. The nurses act like they don't know how to take a BP and then they try a few more times and get a funny look on there face and back out. This happened a number of times and finally I told a dr. I didn't think his nurse knew how to take BP and he smiled and said the nurse couldn't find one and was very embarressed. He took it and shook his head and said something wasn't right. he didn't think it was anything to be conserned about.Hm.(Haven't been back to his office.

Thanks! I have tried one type of adrenal extract from my chiro/accupuncturist. I can't say it did much to help me. She mentioned I could try the Chinese herbalist to get something stronger, but since it would be hard to tell the interactions I've kind of held off. YOu know how it is, until I get desperate enough:-) Thanks again!!

sorry to hear about the bad day. yes most days I don't know why. Try to keep some protein bars and some gatorade next to bed so when you have a pooey day you don't hav to get up right away. hope things get better!:-)

amazon.com has two of his books for sale on web site.

my dr. is a sweetie as well and has said same thing!! She really keeps me going. I do believe "we" the dysautonomics will solve this. I went to store today and a friend said she kenw 5 mutual friends who'd passed out and of course all tests were great. They don't know what to do. This isn't that rare, Its under diagnosed because of apathy and if there was interest the money would be there. I told my husband if I could win one of those super power balls I would spend it all on a research facility only for this and training future Dr. Grubbs!:-)

is he eligble for medicare? Can't the specialist see him or have him admitted? What about Catholic charities or some church based org? Sometimes the have drs who in "special cases" will admit. I would go to a church and see about assistance at this point. you may have to help, I hope you have the energy. I'll pray to st anthony and st jude.I'm sorry i'm too far away. Get a different Lawyer fo sure!!!!:-) '

I have always been a night owl and this disorder fits right in. next day ***** though. I am on klonopin which helps, but if it is determined to make me awake amytryptilene is the best. only can't take anymore. lowers bp. so I just get up. the poor dog staggers into the living room sleeps in my lap and i think of something to do. so dizzy the next day.Benedryl helps but sometimes will kick back the next day. who knows. Have you tried Tryptophan? did help get circadian rythm back at one time but only for a while. Had to special order that from compound lab. The good stuff. sweet dreams when you get them:-)

I knew you hadn't forgot. We potsies just have to run on our own schedule. I hope you are well. Thank your hubby for me!!:-)

There is something I can't remember the name you can buy over the counter at walmart or walgreeen for the pain. It really helps. When my grandmother was in the nursing home (very alert and mobile just couldn't stay by herself and refused to stay with us, ie burden yada yada) she had infection every month. I asked if she could be put on cranberry extract capsules, buy at walmart, and she never had another one in 4 years. the nurses were impressed enough to ask the drs and family's to try it on the other residents and they saw a 90% drop in UTI's. Gram used to to drink alot of water, in fact only water and milk. The cranberry extract has a lot more of the chemical in it than what you can drink so I would suggest the capsules even if you like the juice. I did just read if you take a drug that you can't take grapefuit juice with you should nt take any tart juice. Don't know if capsules would interfere.:-)

Hi! sorry to hear about not feeling well. I felt great when another dr. had me on prednisone for low adrenal and I really felt great!! But my dr. now did not like it at all and said no. I understand she did not interpret the test results the same way. But oh I sure felt good!! After I went off my NMH and POTS really went off.My Chiropractor puts diathermy on over the adreanals everyother week and it seems to feel ok but not like the good stuff!! Long term+tall, skinny white woman=osteoporosis. I wish I knew another way:-)

Welcome to the board. I hope you follow up on elec and di. Clinicals and school are a lot of stress, so pace yourself. I hope you can get some answers soon.:-) Welcome to the board. I hope you follow up on elec and di. Clinicals and school are a lot of stress, so pace yourself. I hope you can get some answers soon.:-)

I always keep popsicles on hand. Kind of freeze your mouth and you are getting some fluids, vicks is great, cool breeze cough drops are very good. The teachers ask my daughter for them all the time. of course hot tea with some honey , the old reliable. hope you feel better.( FYI whiskey won't freeze, but jello shots, hmmmm:-)

How cool you had papillions. First for me, but the dog picked me. I like her because she is easy going and small enough to move easily. When I have a bad day she lays next to me in bed and doesn't get up unless I do. I really don't know what I'd do with out her. She understands I don't feel good even if the humans dont'!:-)

I just found serviceanimals.org in the newspaper. hope this helps

I have just enrolled my 5 lb pappillion in "school" hopefully for service dog to me. The trainer offers it after it has completed other classes. I would contact the humane society. I have read where epileptics who have service dogs can actually be warned ahead of time (by a minute or two) because the dog senses the "storm" first. I think it would be a great idea. maybe your husband just needs more info.:-)