sally

Finette or anyone else who might have an answer out there.... I have checked online to try to find information online regarding autonomic dysfunction causing the problems of nausea (chronic or otherwise) and I haven't found a good source or explanation for this symptom, although I have found information stating that nausea is one of the symptoms of this problem but nothing to actually explain the process of it all. Does anyone have any information on the whys? I saw information on this problem causing gastro paresis but can that occur intermittently? Thanks in advance for your replies and insight. Well wishes to everyone.

I'm am so sorry to hear of the loss of your husband, he sounds like a special person that anyone would have appreciated knowing and your relationship sounds special. Your story and reasons behind your name is a beautiful story of love, courage & sacrifice. thank you for sharing it with everyone.

Hr d4g7, here's the link. they are also a very informative site and have a discussion board. http://ndrf.org/ hope this is helpful. good luck

Hi, this medication works miracles for our family. Makes it so we function better.

Hi, I don't mean to frighten you but with those type symptoms I would go to the doc as soon as you can. When you have warmth and swelling to the facial area it usually means infection that requires an antibiotic. It could be a sinus thing or tooth abscess either way don't ignore it. We have EDS as well and have not experienced such a thing as being part of EDS. Warmth & swelling are never a good thing together like that. good luck and hope you feel better soon.

Hi Elizabeth, I have sent you a Private Message. And, welcome to the forum I hope your son feels better soon. If you don't rec the PM please let me know.

Wow, what great news!!! It sounds like you had a wonderful Christmas and those are great pictures of your beautiful baby. It's always great to share good news and thank you for taking time at the busy holiday to do so. Have a great Holiday and Wonderful New Year.

Hi Vanessa, Here's a link to explain things about Midodrine (dosage etc.) For ourselves, we take it up to 3 x day (while upright - every 4 hours up to 3 times a day as needed) depending on how we feel for the day and what the BP is doing. It has a four hour life in the body (which is nice) and it may vary per person how many times in the day you are to take it based on your degree of orthostatic condition and what your doc has prescribed. They also state not to take Midodrine before bedtime. If you have questions regarding the times & dosages for this particular medication, I would call the doc back and clarify just to be sure, he may need to adjust the dosage or mgs that you are taking. I wish you the best and hope you feel better soon. http://www.rxlist.com/cgi/generic3/midodrine_ids.htm

Merry Christmas to you as well. I sent you a PM.. have a wonderful Holiday yourself and hope you are feeling well.

Hi Blackwolf, sent you a PM Happy Holidays

Mrs. Glass, I don't know if you have seen any of these docs listed but they are supposed to be electrophysiologists. They are located in New Mexico. They also have a search where you can find a specialist elsewhere in other other states if you prefer. I don't know if they see patients who have POTS though you would have to ask further questions to them. Maybe one of these specialist may work incase you are unable to get your appt at Vanderbilt right away. http://www.hrsonline.org/find_heart_rhythm...searchbycountry Good luck and hope you feel better.

Hi Joanie, I sent you a PM

Wow, great information! I enjoy reading your posts and I feel like I'm getting a top education just reading through all the links for information you have so graciously provided. Although, I must admit it does take me longer than most to understand things because I have to look up the meaning of some of the terms but hey, I'm lovin' it....Thank you for taking the time to put it out there for us to learn from. I would be curious to know what information you may be willing to share on chronic pain. I've been trying to research information regarding EDS and why exactly it seems to cause chronic pain within the bone itself. etc....and the bodys reaction to chronic long term pain, etc. Again, thank you for your time and best wishes.

Good luck with your testing. driving for me when I had mine was no problem, it was later on in the night and next day that my muscles were paying for it. Not a pleasant test but isn't the worst thing I've ever had done. best wishes

Hi, I have a great amount of vision problems when my bp is really low as well, mainly blurry vision. Can't seem to get focused for reading etc and glasses don't make a difference. It only gets better as the bp goes back towards my normal.

My cardio suggested to eat smalls meals and no carbs in the AM, mainly protein and no sugars (for breakfast only) suggested I try it for a short time and I did and for me it seemed to work, symptoms were lessened. She stated the carbs in the morning hours were the culprit for me. some sort of sensitivity to the heavy carbs.

Hi Patti, I'm sorry I don't know much about Adderal but wishing you & your daughter well. I did read that Canada took it off the market though some time back due to possible reactions with the heart in young people but as per this link I think they are letting it back on the market with warnings to youths with structural heart abnormalities that might pose a potential problem. My nephew takes this medication though and has not had any negative reaction to it. Infact, it has helped him a great deal. He has Asperger Syndrome and it helps him focus better than when not on it. Sounds like your daughters doc is a great one and feels comfortable enough to prescribe it although I can understand your reserve when hearing these type of concerns. Good luck and best wishes. for you information only, not to scare you...... http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp.../2005_92_e.html

Hooray! Congrats to you for a job well done. Wishing you good health now and throughout the upcoming New Year.

So sorry to hear about your brothers health and well wishes to you and your brother and hope all is well.

I like your imaginative idea, thats super. Whenever I've had one, I've usually only been able to think..... It's gonna be over soon... Or, I'll have a stupid random thought such as what if they decide to go on a smoke break and forget I'm in there or something...stupid stuff like that. My daughter though, falls asleep while inside the tube when she had to have MRIs. If a person could sleep through that noise I think you could sleep through anything. I like how they give you head phones to listen to whatever type of music you would like but during the testing the machines loud banging drowns out the music...feels like your listening to 'Stomp' in person while lying there.

Hi Lisa, Wow those tigger point injections sound horrible! You are brave! It sounds like you've had quite a day overall and I bet you are glad the day was over after all that. I hope they find results that will help you feel better soon. It is nice to hear that the nurses have been such a big help towards your healing process. There are alot of great nurses out there that make all the difference in world to someone feeling ill or frightened during a procedure, etc. That is very thoughtful of you to want to make her a baby blanket especially feeling poorly and I'm sure it will mean the world to her coming from you. Good luck on Thursday and consider fingers crossed that they find some answers. Feel better soon

Hi Sue, Happy Holidays to you too! I sent you a PM enjoy the day!

Can relate to that BP, I just hate that feeling. Half the time I feel like a drunk person walking around or my vision is blurry. Does your BP normally run that low? Maybe see if your doc needs to make adjustments (dosages) to your medications. Hopefully you just were a little too dehydrated and just need replenishing of fluids/salts. I find when mine is at its worst that seems to be the culprit. I hope you feel better soon.

Happy Happy Birthday! hope your special day was grand!

Hi Amy, I'm sorry to hear that you had to give up your job. Were you able to take Medical Leave until they were able to get things figured out? Wishing you the best and fast recovery to get back on your feet. I myself had to go P/T from full time due to health and even the P/T is a struggle most days. Good luck and feel better soon.