sally

Hi Patti, Here's a few links that maybe you will be able to locate information that may help the situation and make the college give the accomodations required to help your daughter. Good luck and hope your daughter does well and feel a lot better soon. http://www.ed.gov/about/offices/list/ocr/transition.html http://www.ed.gov/about/offices/list/ocr/publications.html

I'm not sure about the particular medication but I have read alot of people with dysautonomia seem to have sleep difficulties. As our family members do as well. good luck

Good luck on your LP, that is not fun at all. I wish you the best during your test.

I am so sorry you are experiencing this frustration. It's hard enough to try to feel better and then on top of it deal with that type of thing. There are others on the forum that have much wisdom regarding this very thing than I do but I wish you the best and hope you can get this doctor to cooperate with you. Maybe at your appt you can explain all and hope that he will help out. good luck

Very interesting, thank you for your contribution. have a great holiday

Hi Evie, I think alot of the college dorm beds are pretty much the same and you are able to make into different heights as well as some are connectable to each other to make bunk beds. The ones we've seen are not bolted to the floor. As far as raising the head abit if that is what you may need to do, you might have to do some modification (home made modify) to adjust it to what you need. If I may suggest though, to purchase what we call egg crate foam for the beds to fit under the mattress pads. It softens the bed abit, as they are usually quite hard. Also a down topper works wonderfully to lay on especially if you have painful joints. At least while in Boston you won't have the heat factor bothering your blood pressure issues, it's pretty nice in the summer. While scary it is, at least you sound prepared and on the right track with things and it sounds like you will do very well in what you set out to do. If you don't mind me asking what are you studying? My girls are hanging in there, although they are not like the normal people around them, but they rise and fall at times and try to sleep when they can as illness really aggravates the blood pressure issues and fatigue problems. But as you well know, that's quite a task while at college to get the right amount of rest as there is always something thats need to be done. For them, they are lucky that Midodrine seems to help so they can function better. I was more worried then they were I think about things. Good luck and take care. sent you a PM as well.

wow briar rose you always find the greatest links about things. sorry for the delay, just read it. You should write a whole guideline with all links you have found over time it would be priceless I'm sure. You are a great researcher. Thanks for taking the time out to do so. have a good holiday

Hi Pamela That sounds so scary for you. I hope you are feeling better soon and they get things regulated for you. good luck and best wishes

Everyone has given so much great advice already, just wanted to say hope you feel better soon

Hi Evie, Congrates on your acceptance to Boston! That is great! Sounds like you'll have a wonderful experience there. It does get very cold however! brrrrr. Usually if you connect with the college disability office if you need to for any changes are needed depending on the severity of your health issue, they usually are very helpful. The sleep issue with room mates is always a delima unless you are forunate enough to get someone who is considerate towards health problems. both my daughters are attending different colleges, one in our homestate and the other in Florida (heat helps her pain issues). Both girls have health issues including blood pressure problems but for the most part have done pretty well and at time have had to take time off when needed but the universities have also been helpful because we made them aware of the possible problems before hand (for our situation anyway). I wish you the best at your College and the best of health while attending. You may want to see if the college has a website that the students may have to get better information about rooming, classes etc. I think most usually have this type thing once you have joined with them. good luck

Dayna, I'm sorry that you are having a tough time and hope you feel better soon. Symptoms do wax and wane for most people although for alot of people symptoms are there everyday. I think it's the hardest on people who were feeling normal before this hit and who were active and full of energy. There are those who have had it pretty much a life time, myself included. For me, it is an everyday thing with the once in while normal thing, I just don't discuss it with anyone outside my own family or physicians because people just don't understand. The adjustment periods are rough for sure. What I did when things got really rough at one point is, I cried (mourned) for my self, my expectations for things and the whys, etc and then let it go. I stopped trying to keep up with everyone else which made things worse for myself in the long run. I didn't give up things but I learned to adjust. Give yourself permission to have a feel bad day and give your body what it desires which is rest that day when you need to. With this type of problem it is truely all about balance in your life, which is the hardest to learn for most of us. Good luck and feel better soon

Welcome Shannon, You'll find a lot of good information here. good luck and best wishes

Welcome April Hope you feel better soon and wishing you the best.

Hello, Just wanted to add a few things on top of all the wonderful advice about EDS you've already gotten so far. Both my children (now adult women) were diagnosed with EDS III. I remember when our girls were first diagnosed, it seemed like a grim reality when we were told this diagnosis but we later found that each person who has EDS seems to have a different degree of severity with it so hopefully your children will have a milder form of it than most. Each of our girls suffer with different things from EDS compared to each other to a lesser or more severe degree as well as myself. Just for an example, one daughter has more chronic stronger pain in multiple joints than the other daughter, while she has gastric problems from it and the other has no gastric problems at all. They each also share common symptoms/problems as well from EDS though. Just to touch on what Steph said in her post, which I strongly agree with, is to be careful with contact sports and limit what and how much impact is placed on the joints to avoid perm damage. We were not aware of EDS at the time when our youngest was playing contact sports & dance so we didn't know about proper splinting, etc. so she had terrible damage done to her joints because of it which has led to her pain levels being what they are I'm sure. Also if your children are in need of splinting for the knees, we used bioflex splints and found them very helpful. Plus having a well imformed PT that is familiar with EDS is very helpful. We have used a variety of things to help with the pain levels for our youngest over the years. If you are in need of information for the chronic pain problem, just send me an email and I would be happy to share what we found that seemed to help and what didn't help (for us anyway). Also we made certain accomodations at their school to make things a little easier to get things done without such a struggle. wishing you the best and at least they have you to lean on and they will know you understand just how they feel when they have a tough time to get through with EDS. That very thing helps my daughters get through rough spots, just knowing someone else can relate on that level. Good luck and best wishes.

check out this link...alot of people have this problem from what I've read about 20% of the population. http://irlen.com/index_sss.html It also deals with visual things and migraines.

Personally for myself, what I do to expand knowledge of this problem whenever I'm able to anyway, is share information on how this problem effects the persons life and symptoms with medical students who are studying with our cardiologist. She is great about having Med students observe & train through her practice continually. Whenever we can, all three of us are seen there and while on our visits with her, she has always had new students come through and they are very interested in learning about it. Infact, the cardiologist sits and listens as well and asks if we mind discussing these things with them. (she's a keeper!). They are also very interested in the Ehlers Danlos syndrome and effects, symptoms, etc. So its good for us on one hand and a learning experience for them as they don't get the opportunity to study such disorders at any great length at med school. Infact I did this again today as I had to have a stress test done and met a new med student (observing) this time around as well. He was very interested and eager to hear about EDS & the blood pressure issues. I figure in the future, if they meet someone else who is complaining with this stuff they will hopefully understand the issue better and maybe catch the diagnosis for someone else at an earlier stage to avoid prolonged frustration as I had to endure. Good luck, I know they have some great information brochures listed on this site for distribution as well.

cramping of muscles could mean anything from dehydration & electrolytes off balance or magnesium def. I would suggest that a visit to your doc is in order for these type symptoms especially with your other symptoms. A blood test may be needed. Good luck and feel better soon.

Hi Louise, Please convey to your daughter not to be embarrassed to ask for help through the professors etc and to explain her illness at the beginning of the college year or semester to each of the professors when beginning the year. Our daughter typed a letter explaining the illness and how it effects her. It can make a difference in how things are perceived by the professors when things are not accomplished or done as they require when they are required. our daughters who are both in college, one in another state far away, has done this and it does help the teachers to understand. All it is doing is making the playing ground equal so to speak so she can accomplish what she needs to. She may also have to do this type of thing when it comes time for employment for her career at times in the future. Our daughter found some professors also could sympathize with her due to their own disorders that they expressed to her so they ended up having a common ground. Good luck and I know the frustration you feel watching your child suffer while trying to accomplish their goals, you want to just swoop in and fix things but I've learned that you have to just inform them and then let them decide the when. My youngest usually won't give up until she falls flat on her face in exhaustion she is so determined but she is slowly learning to self regulate while my oldest has already learned to listen to her body and make modifications as needed. I advise and then let them decide what is best for them even though the mom in me wants to make things all better, they have to learn through doing as well. Good luck to your daughter and congrats on the OU acceptance.

Hi Jenn I would call that nurse back if you have concerns about taking this medication and you are having side effects from it that are related to the heart and asked to be switched to another medication. If she displays an attitude again, just tell her to lose the attitude and when its HER heart that is involved then she can decide for herself whether or not to ignore it but until then its YOUR heart and you have concerns and you would appreicate it being considered. Your GP is correct, that all medications have side effects some you can live with and may only effect you in the beginning stages of taking the medication and go away after your body adjusts but if it is effects the heart rate or makes you short of breath or feel faint, I would not take it either myself. There are too many other medications out there to have to take a chance of something happening. That's just my opinion. But, I would absolutly not tolerate any attitude from the nurse or doctor just poo pooing my concerns away. Otherwise I would get a new doc and would tell them that as well. But, again thats just me. I don't know if you have ever tried a medication called levaquin or not. but, it worked great for my sinus infection after other antibiotics did not even touch it. It also, as the other medications out there, has side effects that can be serious but I did not experience any ill side effects myself from taking it. Good luck and feel better.

Hi Jennifer, If you are heading out for a trip, make sure you have plenty of drinks, snacks and medications and are feeling well at the time and pace yourself. Depending on the severity of the orthostatic problems is how you should look at traveling. Maybe take small trips to build up your confidence so you won't be so nervous when you have to take a longer trip. Good luck and stay well.

Hi, I read your post about being ill while at College. I hope you don't mind me chiming in but I was caught by this message. Both my children are in college full time and dealing with health issues as well so I know just how hard it can be. Pat yourself on the back for what you are accomplishing while ill. As far as how other people are going to view you now since you've had this last illness due to medication is just that, a reaction to a medication and probably stressors from a new environment and college life which can pack a wallop to anyone let alone to someone who has health issues. So don't let it get you down, just don't forget to breathe and give yourself credit where credit is due. How other people view you, you can't control anyway and you shouldn't worry about it. Most normal people will admire you for what you doing inspite of what you have to contend with on a daily basis. As far as the rest, people are going to think whatever they want anyhow so don't waste your energy on the negative. Just keep doing what you are doing and don't forget to give yourself breaks in life and pamper yourself. Please try not to look at it like it definds you, it doesn't, you have more courage and strength inspite of it. Try not to beat yourself up over what you don't have total control over. Its okay, and anyone there that views you in the terms you just decribed is not worth wasting time over to begin with. I hope you are feeling better by now and kudos to you for doing what you are doing.

Hello again, I sent you another PM hope you got it okay. I did get your msg. Also I thought this link might help you with information for your daughter. It has great info and has younger people on there to connect with. http://www.dynakids.org/index.jsp good luck

Hello, I sent you a PM regarding your question. have a good day.

It's always a good idea to keep copies of records to not only check for accuracy but to have on hand when you need them for any future appts with outside specialist without having to wait for the office to send them. Having said that, try to remember that if you do find something that doesn't seem correct, that doctors are only human and they are fallible as any human being (even though some might not like to think so). I think the problem also lies with making sure to have clear communication when speaking with the physician, trying to keep things clear and concise as possible. With anyone who has a ton of different symptoms or difficult health issues, the information can be overwhelming. For me, usually when I am relaying symptoms etc, I am probably feeling badly (symptom wise) at the time and may feel nervous and I think also that when you have a condition that is chronic, the person wants to feel validated so that any notion outside what we think is validation is deemed an insult rather than just probably just an opinion, a mistake in writing or communication. I have had my records written incorrectly as well in the past, I've had them making live family members; deceased on paper due to the overwhelming information being taken down at the time. Usually all you need to do is calmly let the physician know what needs to be corrected and why. They want things as correct as possible as well to avoid any further complications for them. Also keep in mind, some docs use transcription for the record department and alot of docs have the most horrible hand writing so things may get incorrectly transcribed. I'm not saying that there are not some jerks out there that just want their opinion to be right no matter what but most docs understand if you explain the whys and they would probably appreciate you making the correction to avoid future problems. You have to remember, that they see a ton of patients who have a ton of complaints with complicated complex problems such as this one as well and I could imagine that things could get messed up once in a while with words and records. As long as you like this physician and he/she has done well with your care so far, give him/her a chance to rectify the situation. It could just be an honest mistake.

Hello Sorry to hear that your hair is falling out. Do you have another illness that would cause such a thing to be happening? I'm not aware of orthostatic problems causing severe hair loss. Could it be due to some type of nutrient loss? I do know that certain meds can do this as well as certain other health problems (illnesses). I can understand the anguish you feel, our daughter who has UC and during when her illness was at it worst and while taking high doses of Prednisone etc lost about 75% of her hair. It came out by the handfuls also. Maybe question your doc about your medications side effects, if you are taking any, to see if that might be causing it to fall out. Good luck