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I don?t know what to say to help except that I have the same thing happen too. my fingers and toes feel like that too. And then when it stops it feels like pins and needles.the drs thought it was my pssoriatic arthritis, but i dought it the more i read on this forum. i was tested for rhumatoid arthritism because they were so sure it was that, but i did not have the rh factor. i even did 6 months of injecting myself with an imnuosupressant to see if it helped, but it mad so many other things worse. I hope somebody has an idea.

I also cannot lie flat or I get dizzy. I can lie down if I am at an angle as well, or on my side, but I never thought very much about it being my inner ear. It would make sense being that, I have lots of inner ear problems. When I do wake up from lying flat, I can pretty much be sure an ear infection is coming, but I never put it together with my getting dizzy laying down.

First of all, I am not starting a debate here on wheelchair use on planes. It is a very sticky subject. As a disclaimer, my relative works for an airline so I am not picking on them. Just words of warning and experience. You should definitely use the wheelchair. the security lines are so bad lately, and you do not need to even be worried about fainting and missing your plane because they are requiring medical help. In case you do not know DOT regulations require if you are bringing your own manual wheelchair that they store it in the onboard (read in cabin) closet. unfortunately many times the crew will try to say it is full( it may have their luggage in it, but unless it is someone else's wheelchair you are within your rights to require them to empty it, store whatever else is in there elsewhere and place your wheelchair in the closet. of course your chair must fit to qualify, and pre boarding is usually best, so someone "important" (and I assume in DC there is always someone important...wink) doesn't get their luggage in there first. if you did know this good, if not feel free to contact me and I can give you more info in rules and regs. Unless you want to check your wheelchair at the gate which is fine too, but many of my friends have had their power wheelchairs ruined by the airlines, and then they are on their own to have them fixed. Also many of them that checked theirs needed to wait until it was brought to the gate, and missed connecting flights. As far as water,the news wrote about an hour ago, you are not allowed to bring bottles of liquid on flights, so bring a note from the Dr. saying they need to give you water and refill you as you request for a medical condition, maybe that would work?

Bri, i say call your dr. i do get this occasionally, i even went to the ER recently for this because it was worse than usual. i called my PCP and they told me to call 911.so an ambulance ride for me. all my tests came back normal for me, but abnormal for everyon else, so they gave me a nitro pill, several bags of salene, and took tons of blood. they wanted me to see the cardio immediatly, but i was going to boston in 2 days from then, so i did not go. HTH Joy

You sound like you are a great mom. Try getting your pediatrician to let your daughter see a neurologist, it might be something there. ANS problems are cardio and neuro as well, so perhaps a neurologist will at least have the reason why this happens or even a way to stop it from happening. I have had this problem all my life. Just last year my mom was in the room with me while I was having my son evaluated for just seizures and the same "not breathing" and she says( I quote) " Joy used to do this as a kid she was so bratty nobody wanted to baby-sit her because she did this and she would pass out." the neuro looked at her and said" this was part of her (my) disorder, she was not being bratty" wow. My mom had the wind taken out of her. She has been telling people all my life I am a spoiled brat, and that I faint for attention. I am so happy you do not have this same theology as my mom. He told my mom (who by the way is a nurse) in all the medical terms why this happened to me, and now she has stopped telling everyone derogatory stories about me. She even apologized to me for it. I think when he told her that is when she realized I was not a hypochondriac and my fainting was a real disorder. Thanks to her is why I saw the dry s in Boston, she pulled her rank at work and got me into BMC so quickly and now I have been getting better for a month. I hope this helps you, sorry it was so long. Joy Mom to 4 kids Teach your children well, they will decide your future!

i do not know anything about this drug. a quick google search brought this up http://www.healthsquare.com/newrx/GEO1590.HTM because this med works with dopamine levels theoretically it could be related. it also gives a cautoin in this site about slow heart beats. it could be interesting to find out if they are related. under the caution suggestions it suggests that if you become dizzy, or faint to call your healthcare provider. so they know this drug causes thes problems. As with other atypical antipsychotic medications, Geodon may reduce symptoms of schizophrenia by blocking the action of serotonin and dopamine, two neurotransmitter chemicals, at specific receptors in the brain. Geodon may also inhibit the reuptake of serotonin and norepinephrine into brain cells, which may improve depressive symptoms in people with schizophrenia. Is Geodon safe? Several years ago, the FDA became concerned about the possibility that Geodon and a number of other drugs might increase the very small possibility of a specific, potentially fatal heart?rhythm irregularity called torsade de pointes. The FDA did not approve Geodon in 1998 because there was some evidence that it could cause a lengthening of the so?called QT interval of the heart beat, a change associated with torsade. The FDA asked for specific safety data, which were submitted in 1999. Although "QT prolongation" is still a concern, thousands of consumers have been treated without evidence of the heart?rhythm irregularity. And the overall mortality rate during the trials was similar to that of placebo and with other antipsychotic drugs. Since its introduction to US consumers in 2001, there have been no reported fatalities due to Geodon induced torsade. sorry i cant be more help. Joy

PS--Joy-- My goodness i watch the sox games and did not here about this tragedy, how horrible. May there be a chance it was only be a rumor? I could only hope for that poor family. sadly no, the story is true.. here is a link to the story http://www.boston.com/news/local/massachus...ail_to_a_friend Joy

i am also ok exercising, but i need to do the cooldown/stretching laying down. even sitting after exercising i go unconsious. the physical therapy i was doing to i scared the staff every time i laid down, and finally they discharged me because they were so afraid i was going to pass out all the time. i kept telling them i laid down so i would NOT pass out, but they did not care. it was the same building as my pcp so they had to call him over every time i passed out. it probibly was becoming to much paperwork Joy

Jacquie, are you sure this wasnt fromm the 100' weather in boston? im not being a jerk, it might have been the POTS but it was HOT HOT HOT in boston yessterday at noon! it was a good thing the building i was in was was air conditioned, becausse outside was deadly for people who were not sick. ps did you hear about the lady who died at the red sox game? she was pregnant and died of dehydration. Joy

Kim, i got one of their new sport bracelets. it a is black band with the ingo on a silver medic alert bracelet on the front. i picked it because i am allergic to some metals. it kinds looks nice with all my bracelets my mom makes me near it. it blends. i only fear it blends so much, someone wont notice it when they look for one. mine says vasovagal syncopee( the one most of the EMTs seem to recognise most here) it also says i take florinef since it is a cortosteroid the hospital needs to know that most. that is what all the nursed and dr.s i know said. it also has my medicc alert # and the 800 number. Joy

I have a full neuro workup in Boston. Wish me lots of luck a TTT and full neuro all the same day. Add in 3 hours of driving and lots of fun should it be!! Yahoo!! I am not really sure what to expect.What tests have you had for your inital testing at the neuro? The dr said the neuro was going to be doing a sweat test and some others I can?t remember what they were. I will update tomorrow. Joy Teach your children well, they will decide your future!

i see the neuro for the first time on wednesday, so we will see.

Willows, i wish i had an idea on why. i do the same thing. my dh is going nuts over this. we have been married for 11 years, and it has been so bad for the last year he keeps asking me if i am going through monopause early. (i turned 33 this month) from what i am going through it seems that i sweat because i wrap myself up. but that is not the only reason, because he says i sweat when i have no sheets or blankets on as well. sorry this isnt more help. i know it is related to my NCS though because it has happened as the flares get worse. Joy

Dionna, I have psoriasis so my scars are always as you describe. Sometimes immune disorders like psoriasis go along with autonomic disorders. Ask a dermatologist. Sorry that doesn?t help more. Joy Mom to 4 kids Teach your children well, they will decide your future!

i have been on florinef for 4 years, and midodrine for about a month. does it work, not sure yet. i am still passing out just not as much. Joy

hi while i am not in boston, but in springfield, i am but one of the ones on this list who do go to boston. in boston i see Dr. Paul LeLorier. i do not know if he takes your insurance. you might try calling his office # he works at Boston Medical Center. i met him last week and he is very nice i liked his PA as well. Joy

How about a new friend? Joy

>>He makes too much money for us to be on state help as far as I have been >>told?? many states have a buy down program for state insurance. it is not well publicised, well, because too many people would apply. apply for state insurance, and with it all!!! receipts for your families health stuff. all vaxinations, all dr visits and Rx. receipts and such. hope this helps. Joy >>He makes too much money for us to be on state help as far as I have been >>told?? many states have a buy down program for state insurance. it is not well publicised, well, because too many people would apply. apply for state insurance, and with it all!!! receipts for your families health stuff. all vaxinations, all dr visits and Rx. receipts and such. i know the feeling, DH also makes a lot on paper, but with my health, visiting Dr.s almost every week, and having a son with autism and a special diet, our health bills exceed our income. never mind stuf like bills and food. hope this helps. Joy

Dayna, I also have kids ages 11DS, 9DD, 8DS and 6DS, I am having similar troubles. DH is the manager at a car dealership, so he works up to 12 hrs a day 5 or 6 days a week. He has been leaving work when the EMT's come to pick me up, but I'm worried he is going to loose his job if that continues. I guess the only advice I have is what I try to tell myself. Give your kids what you can. One of my sons is autistic, so that is even harder. My family has moved away all over the country, and with my mom visiting these 2 weeks right now I know how you feel about your mom. We fought today because she wanted to leave, and I asked her to stay for 30 more minutes so i could rest. She was complaining she was tired! I was recovering from my faint yesterday, she has me up all day because she wants to get my house clean(which of course means she is going to try to teach me how to do it the right way.. not just do for me, I need to be right there helping.) anyway. They don?t get it. Whether it is because they can't or they don?t want to, they do not understand. i agree with Carmen, talk to her about it. i talked to my mom and explained to her i need to rest and she bit my head off about being on vacation, but she stayed. when i saw her tonight she mentioned that she was glad i rested, and did not seem upset about it anymore. that is the good and bad about family. they will tell you off, but they will still love you in the morning. <BG> I get through it the best I can. I am not good at asking for help. Do you have a church group or something like that that can help? I know my local MOM's (mothers of miracles) group has helped me out. They make meals, have done laundry, even just swept the house for me. Joy i thought about something else. do you qualify for a PCA? ( personal care assistant?) the disabled get them. it is like a nurse that comes ank takes care of you. i am not sure who you contact in your area, i am in process of getting one through the department of mental health for my son. call the agency that is in your phone book, and insurance pays it if your dr says you need it. just a thought. Joy

i wore a dinet bracelet to the dr yesterday and he read it. i had it on the same arm as my medical alert bracelet, so he was reading both of them. he seemed to be amused by the quote. everyone i know that reads it laughs, and then asks me about what it means. i have told a lot of people about it. thank you for having them available, they are great. my DH wears his too. Joy

my aunts is under control, she has not fainted in over a year, and she says her symptoms have basically gone away. she is off the meds as well. Joy

Today i had a dr appt in boston,a 1 1/2 hours drive from home. we left early, right after all the kids left for camp. good thing because in the lad of one way streets, we took every wrong one. (DH was driving) it was a beautiful day for a drive though, and we took the convertable. it was kinda funny watching my mom in the back seat, she looked like the unibomber all covered up in her pullover and hat and glasses.LOL. when we got there i am so glad i took my wheelchair. we were hungry so we stopped in the building next door for lunch. while i was waiting i asked Spiro (DH) to go back to the car for my coat. it was so cold in the building. while he was gone i watched my BP go from 92 to 59 instantly. i knew i was a gonner! when he got back he looked at me and my moniter and tried to get me out of the chair onto the floor, but he was not fast enough. i passed out in the medical building next to boston medical center. they of course called 911. can you believer that they needed paramedics to get me to the next building? so dumb. they wanted me to go tpo the ER but i insisted that i was supposed to be there for an appt in 30 minutes at the cardio for just the reason they were called. the EMT's had to go upstairs with me, how embarrasing!! When i got in to see Dr Lelorier they did the usual chat, and he feels that the auto accident may be causing this to be worse. he thinks that it may also be neuro, so he ordered a full neuro workup as well. i need to have a MRI again here in springfield, and he wants another TTT and sweat and some others i forgot. he doubled my dose of midodrine. he asked about my having stopped taking the lexapro. he felt that possible the fact that i stopped it may be why i am worse. when i have the new tests, i will update this again. they want them done within the month.

1. Name: Joy Quinn-Mavredakis 2. Age: 32 (until next week) 3. Dx: vasovagal/vasodepressor syncope 4. Age at dx.: 29 5. Where you live: Springfield Massachusetts 6. Symptoms at worst:(current) fainting multiple times a day, everywhere! In a chair, standing, moving around, not moving, dizzy constantly, vertigo(sp) 7. Symptoms at best: asymptomatic for 18 months last year until a car accident 2/13/06 8. Medications/treatments, etc. that didn't work for you: my first try of midodrine i had an aparent allergic reacton on the first dose and landed in the ER 9. Medications/treatments, etc., that do work for you: i have been off my pharmacopia (10 of them for all the various symptoms) of drugs for 4 months, and i started te midodrine again without an adverse reaction 4 days ago. since that i have had many pre-sympacal episodes but only 2 true faints, and was able to recover from them much faster. i was talking within 5 minutes instead of 20, off the floor within 10 minutes on my own power with balance from others instead of being picked up with brute force. and i was able to continue on normally within an hour instead of needing many hours with my feet up, and days of recovery from the fatigue. i am also using a manual wheelchair 90% of the time i am not laying down. i am using it while i am out and at home. things i want to try: i have a Rx for the stockings, i am waiting for them to arrive. Joy

can your friend look into this program used by nonverbal children and adults? it can be used as a printout or as a "teletalk" she pressed the button, and it plays the pre recorded word. this is how we taught my son who is autistic to speak. here is the web address. http://www.mayer-johnson.com/

Fatigue!!